TRAM Flap Patient Advice

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What you want to know before heading into surgery

A new friend, a breast cancer survivor, recently wrote to me and asked what advice I had to offer anyone preparing for a TRAM Flap surgery. I realized, I've been writing about my experience of having this barbaric surgery, but I haven't offered information about what to do to ready oneself for such an operation. So, here goes...just please remember, my experience is based on not having cancer and choosing this surgery to avoid my high chances of breast cancer. My experience is very different from someone with breast cancer who may have several surgeries before/after/during chemotherapy and radiation treatments.

Prior to TRAM Flap surgery

Choosing your surgeon

I don't claim to be an expert on how to choose a surgeon, and I must admit, I was in a better position than many people since my sister had already been through breast cancer twice and had two of the best surgeons in the San Francisco Bay Area. Therefore, I was familiar with their work. Regardless, I still wanted to know how many of my type of surgery they had done. I wanted to see photos of my plastic surgeon's work. I wanted to know the success rate and what kind of failure statistics were available.

As much as I was freaking out about having this surgery, I knew I had to find out some of the details. It may seem ridiculous to say this, but do your research. Know the type of work your surgeon does. There can be huge differences in the results offered by various doctors. As with many medical-related things...ask nurses who does the best work; who they would go to if this was their body.

Someone like me who didn't have breast cancer but tested positive for the BRCA genetic mutation in conjunction with a history of an abundance of breast cancer may know they will have the surgery, but it is a significantly different experience from someone with breast cancer. Someone, like my sister, with breast cancer is basically rushed through the surgery process and their choices seem much more limited. I had too much time and too many options to think about, but that also gave me more of a chance to pick and choose what I wanted and who I wanted to carry out the surgeries. Do your research, or have someone who isn't freaking out about the impending surgery help you in this process.

Exercise

Once you decide to have the TRAM Flap surgery, if you can, try doing the exercises suggested by your surgeon to strengthen your core and build up your stamina. Of course, that is an extremely presumptive suggestion. Of course, if you are in the middle of doing chemo or radiation, it is understandable that you will be feeling like crap and may not be up to doing any exercise.

I was better at building my stamina than doing the core exercises they offered, but I'm glad I was up to an hour of briskly walking on a treadmill prior to surgery. Do what you can under your doctor's supervision. It seems to help.

If you have children...

My two children were still in school when I had my surgery, so at least they had something to do during the day, unlike now that summer vacation has begun and my 8-year-old's favorite thing to say is, "I'm bored."

Still, they have their weekly activities including music lessons a 15-20 minute drive away. We didn't want to lose their timeslots, so I made arrangements with family and friends to drive them the first month or so until I can drive them myself. I haven't quite reached that goal just yet.

Obviously, if you have the means, make arrangements for summer programs at your local recreation department, sleep-away camps, etc. Or perhaps it's time to visit grandma and grandpa for several nights.

Otherwise, your friends and family become priceless during this time. Once your initial support system must return to work, or whatever, I hope anyone facing this surgery has some good friends they can rely upon for helping with your children. This brings me to my next area of preparation.

Friends and family are priceless

It is during the month or two (or three) following your surgery when you realize how thankful you are to have friends and family upon whom you can rely. You may need to call on people to help with:

  • grocery shopping
  • picking up medications
  • driving to and from doctor appointments
  • helping you shower (the first week or so at home)
  • carry things, like pillows and plates of food
  • cooking meals
  • general errands
  • and more I can't think of now

Everyone is busy in their own lives, of course, and most people who offer their help when they find out you'll be having this huge surgery likely won't be as available after your surgery is complete. Still, if you can find a few friends who can help, that can make a huge difference in your recovery. Or if you belong to a church, synagogue, etc., don't be afraid to contact them for help -- meals, driving, whatever; you'll be pleasantly surprised by the offers of help.

In other words, try to get these things set up prior to your surgery. The more preparation you have, the smoother your recovery process will be when you don't have to worry about these things.

Items to have ready before returning home

Aside from stocking up on every day items such as shower supplies -- shampoo, body wash, etc. -- frozen meals as backups, basic grocery supplies, there are a few items suggested to me that have come in very handy.

  • Shower Seat: Especially during the first week home, you may want some kind of shower seat. They sell these at medical supply stores and sometimes at Costco (I'm pretty sure, but check on that). You're not supposed to be submerged in a bath until the incisions heal (not that you'd have the strength to get into or out of tub), so once you are cleared for showers, they will be exhausting at first and you'll want to sit down on something while your hubby, family, or whomever helps you wash your hair, legs, whatever you can't reach.
  • Recliner Chair:Another friend told me about this indispensable item. If you don't already have one, purchase or borrow a cushy reclining chair of some sort. I call mine, "the throne," because I've spent so much of my first nearly six weeks in that chair. I have TRAM Flap friends who said they even slept in their recliners the first couple of weeks because you don't lay flat for more than a month after the surgery. I set mine up with an ottoman and a lot of pillows. I have a small table in front of me to hold all my daily stuff. A couch isn't terribly comfortable and they tend to be difficult to get up from.
  • Armrest Pillow/Bedrest Pillow: At night the first few weeks, I found this armrest pillow to be extremely helpful when piling up the pillows. You won't be sleeping in a flat position because all your muscles tug too much and it's stressful on your belly scar. And as for sleeping on your side, it's painful. It's taken all this time just to be able to sort-of lay on my side when I hold a big cushy pillow to my stomach and chest. I don't know what it's like for someone who only does one side, but having a bilateral mastectomy doesn't leave much room for sleeping on your side.
  • Back Scratcher:I know this sounds silly, but you can't imagine how handy a good back scratcher is. You know the kind...those cheapo, long bamboo stick with the curled end and the rough edge. Trust me, when you can't reach those itches on your back, that's exactly the time your back becomes itchy. In the hospital, you'll find it quite handy when no one else is around and you have very limited arm movement. Scratch your back, your leg, the back of your knee, your toes...there's always something to scratch when your body won't allow you to reach it.

The first week in the hospital

Have an advocate

If there's one thing you really need to know about the TRAM Flap, it's that you're going to have a long recovery time. The surgeons don't tell you as much about the recovery as the nurses will and the first week in the hospital never seems to near an end.

For a great many years, my parents have believed when one goes into the hospital, they should have an advocate with them. The first few days after surgery, when you are groggy from all the pain medication and may not know what you want or need all the time, the idea of having an advocate staying with you is most dire. I realize everyone may not have this type of support system, but if you can arrange it, you'll find it most helpful in the beginning.

Not only is it comforting to have someone looking out for you to make sure you're not given an extra dose of some medication that will cause you to OD, but it's nice to have someone there when you can't move to reach something across your little hospital bed table.

Have something to do...or not

I went to hospital all prepared with two audio books on one Mp3, and hours and hours of music filling another Mp3. I knew I would be drowsy from drugs, so trying to read (and hold) books was out of the question. In the end, it didn't matter that I brought these things...I never used them. I was in and out of sleep most of the time, so no matter. Regardless, I likely would have wanted them had I not brought them.

Also, I wanted to write whilst I lay in bed, so my computer was a must. It was also rather convenient the hospital provided internet access. Looking back, I don't know how I got through some of those first blogs. My mom actually helped me prepare the photos for downloading them to my stories. (Advocate to the rescue again)

I didn't bother bringing anything like a sketch pad because it hurt to keep my arm raised for any length of time. And focusing on anything for any more than a few minutes was excessively difficult in the beginning. Read my first week stories and you'll read that I could barely keep my eyes open for very long.

Don't over pack

I don't know what I was thinking, but I packed 10 pairs of undies and an equal amount of socks along with extra sweat pants and shirts. Silly me. Other than the pair of undies I wore into the hospital, I haven't worn undies since...the belly scar hurts if pressure from the elastic presses on it. I did wear a different shirt and socks to leave the hospital, but I wore the same comfy pants to go home. The remainder of the week I only wore hospital gowns.

Get up and get moving

I know you won't want to, but as soon as you can, begin getting up out of bed and get walking. It's painful and hurts like a bitch, but it really does help your recovery. You'll be getting out of bed differently from how you likely ever get out of bed -- by swinging your legs around to the side of the bed and raising your body at the same time -- but you will get it. Try practicing it at home prior to your surgery so you get a feel for it.

If you don't get up much, at least make sure to ask the hospital if they have one of the air mattress beds that corrects itself every time you move. Likely, you won't want to sleep on your side because it hurts too damn much. That air mattress bed makes a world of difference on your back.

Leaving the hospital

You may not think of it, but you'll want to have several pillows padding and protecting you from the seat belt and the bumpy ride home. Many hospitals use disposable pillows. If your hospital uses these, bring some pillow cases from home and use these in the car. I find it most comfortable to sit on one and use two in front of me to protect from a tightening seat belt.

When you return home from the hospital

The first week home

You're still going to need a lot of help when you return home. My husband took off two weeks for the time after I came home so he could help with me and take care of the kids. He was there to help get me up out of bed in the morning and continued assisting me throughout the day. He helped with my showers since I couldn't yet reach down past my thighs to wash or dry; to wash my back and my hair.

He was there to carry my many pillows from the bed to my throne downstairs in front of my computer and the television. He was there to bring me meals, drinks, and medications. He would separate the medications into Ziploc bags marked with the time of day I should take the medications; he kept track of all my meds when I still wasn't thinking straight. Get used to taking numerous pills every day. Don't skip your antibiotics to avoid infection and use your pain meds.

If you're not up for reading, Netflix has been wonderful since I returned home. The much-needed pain medication tends to dull your senses from doing anything more constructive than watching movies. Plan on being bored out of your mind.

Walk around...and again, walk around

My husband was very good about getting me out of my throne and walking every so often. It feels really weird the first few weeks. Walk through your house and it feels like your muscles are pulling you downward. Just keep doing it...eventually, it starts getting easier. I hope you have someone to motivate you like I have. If you don't have someone at home to tell you, have one of your friends call you every day to tell you to get off your ass and walk. You'll thank them later.

Getting out of the house

You're bound to go nuts in the house after a week or so. If you're lucky to have someone to drive you, after the second or third week, you're going to want to get out. Take short trips to start. For me, the longest trips in the car have been the 1.5 hour drives to see my surgeon for post-op appointments.

You're going to need someone to drive you around until you're off the serious pain medication...mine is Percocet. I haven't driven myself yet and to tell you the truth, I'm still afraid to face the idea of turning my steering wheel and feeling pain in my chest. I have a friend who has offered to ride shotgun the first time I go out. I hope you have someone to go with you the first time, too. Oh, and don't forget your pillows!

Handicap Parking when you really need it
Handicap Parking when you really need it
DMV temporary placard doctor's form
DMV temporary placard doctor's form

Handicap Placard

When you do start going out, you may want to ask your doctor about getting a temporary handicap placard. The Department of Motor Vehicles has a form you can bring to your doctor to fill out. (You may be able to print it out online from your local DMV site) Your doctor may say, "Gee, we don't usually get too many requests for those," but get one anyway. Yes, you are supposed to walk, but when walking through the grocery store is a big deal and concurrently exhausting, you'll be glad you have it for a few months. My doctor set it up for six months.

Wheelchair and a cane

If you have access to a wheelchair, you may want to use it the first week or so when you leave your home (with the assistance of someone pushing you, of course). Borrow one if you can. My parents had a lightweight travel wheelchair that was great for the first few weeks home.

Otherwise, see if you can find a cane to use during the first month. They're also much cheaper to purchase. As time goes on, you may not need the cane to walk as much as when you have to stand still; waiting for an elevator, waiting for someone to bring the car around to pick you up, waiting while standing for anything. It's just a little more assistance when you feel like you can't stand any longer and your muscles keep pulling you down and down. Eventually, you'll need it less and less when you go out.

What to avoid

Too hot, too cold

Don't use hot or cold compresses on your new breasts or anywhere on your skin that is numb. First, because your skin is numb, the hot or cold may cause burning to your skin. More importantly, serious burns or frozen tissue can destroy the breast tissue.

Lifting anything heavy

My doctors and nurses all said the same thing. "Don't lift anything heavier than the Sunday paper." I take this advice seriously because I don't want to create any bulging hernias. And anyway, you don't want to feel the pain it causes when you lift anything heavy; pain in your breasts, across your chest, in your stomach or in your back.

Don't wait too long to call a doctor

You've just had very serious surgery. If you show any signs of problems related to your surgery areas or other signs like fevers or foul odors from your wounds, call your doctor immediately. If there's excessive oozing or redness, call your doctor. Ask your doctor what to look for with regard to problems or your TRAM Flap not working and don't be afraid to call.

Don't forget to take a photo

When I had problems with my new belly button, for instance, we would take a photo with our phone (or a digital camera) of the area that seemed to be getting infected and e-mail it to someone at the doctor's office. Then, they could better decide if we needed to come into the city.

House cleaning

Don't worry about your house or the laundry getting done. No one cares what your house looks like when you are recovering. (No one, that is, except my mother who actually said one day, "I hope the rabbi didn't see your house looking like this.") Let others help you through this difficult recovery. If you don't have friends or family who can help, the American Cancer Society can help with these and other tasks like grocery shopping and driving to doctor appointments.

Wait for showers

Don't take baths and wait for approval from your doctor to take a shower. The first week in the hospital, you'll be given sponge baths; not as satisfying as a shower, but better than nothing.

More questions to ask your surgeon

  • If you are having chemotherapy or radiation, there may be a waiting period before you can have TRAM Flap reconstruction. Get these details as early as you can so you can make your arrangements for family/friend help, etc.
  • I'm choosing not to have nipples constructed, but you may want to. Find out how soon you can have nipples created. Same goes for areola tattoos and when you can have those made if you want them.
  • Find out what size breasts you can have created from your stomach tissue.
  • Find out how to properly care for your new breasts with massage, physical therapy, etc., and what signs to watch out for that the tissue isn't taking and is dying. Find out what happens if the tissue dies. I was told I would have to have an implant if that was the case.
  • Find out where the incisions will be made and where the scars will be located.
  • Find out your options if you're not sure you want to do a TRAM Flap (ie. DIEP Flap which has a higher chance of tissue not surviving because blood flow is interrupted when the tissue is completely detached from your body. Still, it doesn't affect your muscles the way the TRAM Flap does.). Recovery time is different for the various surgeries, so do your research to choose what's best for you.

More by this Author


Am I forgetting anything? Let me know 106 comments

cindyvine profile image

cindyvine 7 years ago from Kyiv, Ukraine

I got MRSA after my tramflap so it was most unpleasant, and the scars below my belly is terrible!


Tammie 7 years ago

This is one of the best info I have read, since I have been looking for information. Thanks


Joelle Burnette profile image

Joelle Burnette 7 years ago Author

Thanks, Tammie. I'm glad the information could help. I wrote this because I had trouble finding the answers prior to my surgery. If there was one thing I left out, it is this...have a "back scratcher." It comes in very handy. I'll add it into the story.

Thanks again for visiting.


cindyvine profile image

cindyvine 7 years ago from Kyiv, Ukraine

How are you doing now, Joelle?


Joelle Burnette profile image

Joelle Burnette 7 years ago Author

Hi Cindy, Mostly doing well...I have my days. I became a hormonal bitch in pain today; unfortunately, my kids got the brundt of it until I returned home and cried for feeling like a shitty mother because I was yelling at them to do the regular things they always put off...music practice, clean the rat cage, etc. They're going to grow up thinking I'm just as screwed up as I thought my mother was.

Otherwise, my scars are still pretty bright red and it feels like someone has a belt tightly cinched around my waist all the time.

Sorry...too much bitching. I need sleep. Catch me on a more cheery night.

Thanks for asking! And you?


Nancy 7 years ago

I am having the TRAM Flap surgery next week. I really didn't have a choice if I wanted reconstruction since I had extensive radiation treatment after my bilateral mastectomy last year.

I really appreciate this site. Some things I already knew, some I hadn't thought of but will come in handing knowing ahead of time.

Thank you for providing this information

N


Joelle Burnette profile image

Joelle Burnette 6 years ago Author

Nancy,

I'm so sorry you have to go through this horrible process. I'm glad you found some answers in my stories. If there's anything else you'd like to know, don't hesitate to ask, email. Where are you having it done?

Please know, you'll be in my thoughts as you face this surgery and the long recovery.

Thanks for reading. Good luck and quick healing!

Joelle


Tonia 6 years ago

My story seems to read alot like mine. Ovarian and breast cancer run in my family. My grandmother had ovarian cancer twice and died from it the second time. My aunt (grandmothers daughter) had breast cancer at 38 and beat it. However, 5 years later she was diagnosed with ovarian cancer and passed away from that at age 47. I have an older sister and a twin sister. My oldest sister is a 11 year breast cancer survivor. She is 41 now but when she was 29 she was diagnosed with breast cancer. My twin sister was diagnosed May 22, 2009 with breast cancer. Today, March 1, 2010 she had both of her breasts removed. She is finished with chemo and after she heals from this surgery she will start radiation. We were tested for the BRCA genes and the results came back "inconclusive". We are just taking it as we have it and dealing with that. I have my mammogram in the next month and needless to say I'm scared. I'm only 38. Pending a clear mammogram I'm going to be having my breasts removed and a TRAM flap procedure performed. I'm scared to death of surgery but will do whatever I have to do to prevent this beast from interupting my life. I've read all of your posts and watched your videos and I can't begin to tell you how informative they have been for me. Nobody wants to tell you the "bad" stuff. They want to say that you will be sore for a month or so but that it will get better. I want to KNOW what to expect so then I don't freak out about something I shouldn't worry about. I do have one question and I can't remember if I read it in your posts but how long does the surgery take? Thanks again for being so honest and willing to tell the truth. Tonia tunja02@gmail.com


Valerie 6 years ago

Thank you so much for sharing your experience. In March I was diagnosed with extensive DCIS. After much research I have decided on TRAM flap surgery. My surgery is scheduled for Tuesday. Needless to say I am apprehensive but at the same type confident in my surgeon and plastic surgeon. Your story has enlightened me on what to expect as well as how to prepare for hospital discharge.

Thank you again and I hope all is going well for you!!


Donna 5 years ago

Hi, I had breast cancer when I was thirty-four. At the time I had a partial mastectomy, chemotherapy, and radiation. About 8 years later, after discovering I had the BRC2 gene, I had adouble mastectomy and tissue expanders. placed. Over the next five months I had saline add to them and then finally the silicone breast were inserted, then later nipples were done. I loved the results. However this summer, I was wearing a blacktank top while cutting the lawn on a warmer day. We have a yard with plenty of trees so a part of the time I was in teh shade. However, when I went inside my implants felt warm the touch. Later in the even Ihad a large water blister on the breast that had once been radiated. Despite antibiotics it ended up forming a thick scab about the size of a quarter. When this opened, there was a hole into my implant. My plastic surgeon did what he could to save it but in August the impant was removed. On January 28,2011 I will be having the tram flap surgery, because the skin that is left over my right side is too thin and will not stretch. I am a teacher and I am a bit concerned about how long I will out of work. I am active will I be able to play baseball in May. What shape would I be in in three weeks, curious if I could attend a musical for my students I have planned for.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Donna,

Three weeks is pretty quick to go back to work after a TRAM. I don't know what your surgeon is telling you, but I had a lot of difficulties that first month; it was rough. Not knowing how long they are keeping you in the hospital, I can just say, I was in the hospital for a week and felt horrible when I went home. I had a lot of help that first month. Still, I know other women who recover faster (and some slower). All in all, I would be sure you give yourself a lot of recovery time and be sure that if you do return to work, do not do any lifting and get plenty of rest. I hope this helps. I'm so sorry you have to go through this. Please let me know how it all turns out.

Best wishes,

Joelle


Melissa 5 years ago

Thanks so much for all this info! I am going in for a tram on Feb 23. I had stage 3 breast cancer in 07 and had a part mest and chemo, radiation. now my other breast is doing weird things and they just feel i need them off. I am having it done in toronto canada and it is an all day surgery and you leave the next day. I am having both sides done. I am a little worried about the short stay in hospital. I am going to go home to my mom's where she is going to rent a hospital bed do you think this is a good idea? Also a nurse for a week or two as well.

Any advise would be welcomed

thanks

Melissa


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Melissa,

They're sending you home a day after a TRAM??? That's criminal. I don't understand how they can send you home if you can't even walk? They had the epidural in my back for several days...are you being given an epidural so you can help control your pain meds?

Please let me know how you are doing after this and what it's like going home.

I wish you all the best in your recovery.

Joelle


Melissa 5 years ago

Joelle

that's canadain health care!

no, no epidural just oral pain meds, you are making me scared a bit.

Oh well I guess I really do not have a choice and I need them off and they do not think the implants will be good for me after radiation.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Melissa,

Sorry for that...I need some filters sometimes. I didn't mean to frighten you, I'm just really surprised and concerned. Maybe the Canadians have something amazing they do differently. Can you tell them you want to stay longer? If for any other reason, you're going to be so loopy from the meds and you'll need someone there to help you with everything for the first week or two. And also, you should have medical personnel around you who know what to watch for if something begins going wrong...someone who is familiar with the procedure and the risks: blood clots, skin dying, etc.

I guess the best thing right now is to ask them a lot of questions. And if you do go home with your mom and a nurse, make sure the nurse has experience with TRAMs. Have a lot of pillows for the ride home. Is your mom driving you home? (my mom's driving would be enough to make anyone want to pass out) Or are they bringing you home in an ambulance to keep you more comfortable? How far is it from the hospital to your mom's? I hope there aren't any potholes because you'll feel every bump.

Also, if you are renting a hospital bed, remember you are going to be spending a lot of time in it and after a day or two, your behind/back are going to hurt. If you can get the kind of bed that adjusts itself using air, you'll save yourself a lot of pain. They didn't switch my bed for several days and by then (because you can't lay on your side or in other positions other than sitting up) my back/tail bone area/buttocks were in terrible pain. It hurt for months, in fact.

I know...a lot of questions and issues. Anyone going through a TRAM needs an advocate to get them through it safely. Please let me know how it goes and how your surgeons are dealing with these issues.

Joelle


Melissa 5 years ago

Joelie

Thanks so much for writing back to me. I have only met the surgoen once that removes the breast and the surgeon that is doing the trams is a different surgeon and they work together at the same time. I only met them once and will not talk to them again until the morning of the surgery. I do have a pre-op apt where they go through all the info etc. That is the day before the surgery so I am trying to get all the info I can. You see I acutally live in the usa now. I moved here a year ago. I am still on the Canaidan health care as I wanted to finish up my recontruction as It would not be free here and I have paid into that system for years! Becuase of this it is hard to get more info. Even if I lived next to the doctor's office you still are limited to how often you can see the surgeons. The protocal for staying in the hospital is only one night. Unless I have major complications they will send me home. Its just the way it is in Canada. It costs the government to much money to keep you there. THey do send a nurse with tram exp once a day to check on me. I will also hire a nurse for the general care for me too. As my mom is 80. Mind you she is in better shape than I am lol


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

My mom's in her 70s. Isn't it amazing our mothers are still taking care of us? Just remember you can't lift anything for a while, even when she asks, "Melissa honey, can you just pick up that box for me?" Use the nurse!


Melissa 5 years ago

Joelle

I really apprciate your advice. Where do you live?

Melissa


Michelle 5 years ago

I am very similar to Melissa. I had a left radical mast Feb 2009 with chemo and 5 weeks of radiation (because of both IDC and ILC tumors and positive lymphnodes). I have my TRAM surgery Feb 1. I can't wait. I will have a prophylactic mast on my right side - so both breasts reconstructed. I also live in Canada in Victoria and my hospital stay will be 5 days. An overnight stay seems very odd. As to the health care - I can not say enough how outstanding it has been in Victoria BC. thank you for all your sharing. I am looking forward to the surgery - but know it is a tough road to get back on my feet!!! Oh well - I have done all the rest of the cancer journey plus birthed three kids - no problem. Love and thanks,

Michelle


Melisssa 5 years ago

wow

Michelle thanks so much for sharing I really appreciate it! I two have birthed three girls and feel I can do this but i am really concerned with the one night stay. I am going to check in with the nurses and doc's on Monday. Michelle i would love to email you personally and go through this together if you would like to share?

Melisssa


Pam J 5 years ago

Sorry ladies I don't want to scare you but I had a horrific experience with my double tram flap but the end result is wonderful. I'm from Ontario and had breast cancer with a double masectomy, chemo & radiation. I stayed 8 days in the hospital and needed a blood transfusion the day after surgery because I lost too much blood during surgery. At first everything looked as though it was doing well but within 3 weeks my abdomen scar started to turn black & smelly. I was told that the skin was dead and needed to be removed. At about 5 weeks post surgery, I had another operation to remove the dead tissue and was left with a large hole in my abdomen to heal "naturally". They used several different methods of wound care starting with a VAC machine (vacuum assisted closure) which I had to wear for 3 months. My abdomen took 10 months to fully close and I endured a number of infections requiring hospital stays along the way. It's been 1 year now since having the original surgery and I'm still not fully recovered and have pain along the scar of the abdomen and have not returned to work yet.

These are the things the surgeon didn't tell me about, but after talking to a few other ladies, they went through the same thing. My breast did turn out wonderful and natural looking & feeling but I don't know if I would do it again after my experience.

Best of luck ladies with your procedures.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Pam,

I'm sorry you had such a terrible time with your TRAM. It sounds horrible. I guess it makes me feel fortunate I didn't have an experience like yours. The closest I came to the skin dying and that odor was my belly button that kept getting deeper and deeper and ended up being surgically closed...didn't want one from the start. (It's pretty creepy being able to see the inside of your body, isn't it) I can't imagine how difficult it has been for you.

I truly hope things begin to turn around for you, for your body.

I agree with you that the surgeons never tell about those types of things that can go wrong. They might skim the surface, but I imagine women wouldn't go through with it if they really knew what to expect. The "docs" on Grey's Anatomy give out more pre-surgery details than the real surgeons do.

Before the hospital began the bone marrow transplant process on my sister the first time she had breast cancer, all they said was, "This is going to hurt."

My sister said she wouldn't have gone through with it had she known the true level of pain involved with the process and she has a much higher tolerance for pain than I do. Waterboarding? They're pussies in my sister's book after what she went through. And what you went through, it sounds like. If the government wants to torture someone, tell them to put suspects through the process women go through: TRAMs, breast cancer treatments, bone marrow transplants. I'd rather give birth to a child (sans drugs -- after they wore off and they wouldn't give anymore -- with complications and too many hours of hard labor as I did with my children) than go through another TRAM. The pain from child birth went away; the TRAM reconstruction pain has never left.

Please let me know if things improve for you.

Thanks for sharing your story.

Joelle


Melissa 5 years ago

I go to get my port out on tuesday as they want it all healed up for the tram on the 23rd.

Michelle your surgery is done now and you should be coming home anyday now. I hope all is well and you are recoving with little pain. I hope you come back on an let us know how you are doing.

thanks

Melissa


Nicol 5 years ago

I am glad to have found this chat, but oh so nervous now of upcoming tram flap surgery. My first pre op doctor who will do my 2nd mastectomy thought I would be sent home day of. An email to the plastic surgeon stated i would be overnight in hospital and home early next day. I am alarmed by this, and will do/say what I can at next pre op to try and make these male doctors understand not only the physical aspects needs to be addressed, but also the emotional aspect that no family member/friend would know how to deal with.

My surgery is in April in Toronto, Ontario. I'm a bit freaked out at moment.


Melissa 5 years ago

Nicol

I am getting mine at womens college in toronto on the 23rd of this month. They told me only one night too. My mom is freeking out and is not sure how to take care of me. getting nervous too


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Melissa,

I got your e-mail, but the address isn't correct/complete and I couldn't send a message to you. I realize you are having your surgery today and I hope everything goes well.

Send me another e-mail when you feel up to it. Or have your mom send a message on your behalf.

Let me know how everything goes.

Joelle


Melissa 5 years ago

Joelle

I must have typed it wrong sorry. I am 6 days out and feeling much better than I thought. I am standing totally upright with little to no pain in the lower incision. Most of the pain is higher up as my drains got blocked in the breast and had to aspirate as there was a massive build up in the upper breast. Oh well so much fun. My breasts are so swollen and I feel I got a doulbe d. lol thanks for all your advise I am so glad I had those pillows on the ride home!

Melissa


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Melissa,

I'm so glad to hear you are recovering well. It's nice to know something I wrote made a difference to help you in your recovery -- thank heavens for big, puffy pillows! How is your mom managing helping you?

Let me know how you are doing.

Joelle


cindyvine profile image

cindyvine 5 years ago from Kyiv, Ukraine

Having had a mastectomy 3 weeks ago on my other breast where they put in an implant, I have to say I advise against tram flaps, having had one myself in 2004. The pain from the belly cut is far worse than the breast, and the healing time is much longer. With the implant, they made it match my tramflap breast, I kept my nipple and the cuts are at the bottom part of the breast which you don't see. A week after surgery I went to see U2 live. I could never have done that after a tramflap. Second time round I am of the opinion that there is no need to put yourself through the trauma of a tramflap when an implant is less invasive and does a better job of a new breast.


melissa 5 years ago

I can understand your opinion but having had my breast radiated 38 days implants are not an option. Also I love my new breasts as they feel so real and so warm! As for the belly cut I hardly feel it and I am off pain meds and I am talking from only one week out. I feel there is a lot of tram flap bashing and I almost changed my mind from other women telling me not to so it. I am extremely happy.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

TRAM vs. implants...it's definitely a tossup. I didn't want implants after watching how messed up my sister's experience has been. She's had to have them replaced several times, they've burst from giving her nephew a tight hug when picking him up, she's had extremely painful infections, etc.

But as someone who had the TRAM, for me, there's been a lot of residual pain involved and I'd certainly like to see that resolved.

I think what it comes down to is, there's really no easy answer and every woman is going to have a different experience; different results. I hate saying that, but it's true. Regardless, women don't get enough answers from the medical field about the results of these procedures (some day, right?). We're left to guess, hope and find other women to talk with who have been through the process as a way to figure out which option is the optimum path to follow.

I just hope my children's genes/lives haven't been struck with the crap my sister and I have had. Won't find out until they are at least 18 (AAAAhg!) when they decide if they want to be genetically tested.


Meissa 5 years ago

Joelle

I totally agree with you each of us is going to have different reasons and have different recoveries. Its hard to tell what really to do. I am sorry you got that nasty gene! i was tested and was negative but did get cancer state 3 and it was horrible. I have three daughters 21,18 and 17 I only pray aswell that they do not get it. I told them I took the fall for them. I only pray I did! I could not bare seeing one of them go through what I have done. As this is international womans day I say more power to us and that we are blessed to reproduce and carry on our triumps to our girls. I only wish I am an imspiration to them!


Meg 5 years ago

I am trying to help a friend who has had an awful time following her TRAM flap. First she was allergic to the tape which cause sores and infection but even worse is she is allergic to the mesh and now has 5 abdominal hernias. Have any of you had the same experience and what did you do.


Evelyn Humphreys 5 years ago

Six months ago I had a bi-lateral mastectomy and tram flap reconstruction. I am still in a great deal of pain and find that the mesh that is in my body is very uncomfortable.

There is very little information on how to deal with the mesh, what exercises to do and when and how the mesh will feel like it is part of my body and not feel like armour under my skin.


Ginnie 5 years ago

I had a tram flap 26 days ago. I had it done here in Toronto. They kept me in the hospital 6 days and I received excellent care while in the hospital. I also required a blood transfusion and my hemoglobe dropped.

I seem to be on the mend but seem to be leaking from the abdomin scar with 2 - 3 dressing a day depending on what kind of medical supplies are delivered to me. The doctor has checked and I have no build up underneath. How long does it take before the abdomin scar stops leaking? This part is so annoying.

I seem to be getting a bit house-bound and my mind has more energy than I physically do. A one-hour trip has me exhausted.


Melissa 5 years ago

wow Ginnie 6 days in a hospital lucky you. I had mine at womens hospital and they want you out in one day. I was unable to make it home so they had to trasfer me by ambulance to east york for 8 hours and left the nest day.

I am just under 8 weeks and I am doing awesome except one stupit thing. For some odd reason I am getting a fluid build up under my breast in my upper chest. I have to have it drained every week, real pain. I have had 3 aspirations so far and I can still feel the fluid build up. Other than that my scars on my breast are not ever red anymore. the scare on the tummy is still red but fadding.

I am so so happy and I think I look fabulos!

i know I can't spell sorry lol


Susan 5 years ago

Hello I am 10 days since I had my tram flap .I work up talking and wanting ice cubes . I was scheduled to be in hospital 7 days.went home after 5.day two I was sitting on edge of bed filming myself on my iPhone. I was on a morphine trip for4 days and up walling day 3. Off nothing 5 day and went home . My fiancé waits one hand and foot UFO up and down the stairs by myself,shower change pajas 3 times a day. Dr has me in bed until Tuesday 22out of 24,Tuesday I see her. Ladies I look and feel fantastic. I'm on Tylenol gave up the percocet.I knew nothing going on. I'm thing up putting my pictures and videos on YouTube what do yo think?


Susan 5 years ago

I totally messed up the above message. I was typing in bed on iphoneSo yes I am an stndng straight walking , showering by myselfIwas one scared woman going into this. I have tightness under myleft breast , which is th breast I nad removed due to "infiltrating ductal carcinoma stage 1". So glad I opted for a masectomy as they found another tumour when they went in. I am surprised at the lack of pain as the scarsand stitches looklike I was in a magicians act and he sliced me in two. I have been recrding m recovery.I'm wondering how long before the tightness goes away


Dee 5 years ago

I was tested positive for Brc1 yesterday> Can anyone tell me were they make insision in the breast? is it real noticable? what will I look like? with flap ? or with implants ? I cant find any info. that tells you when deciding?? im so scared right mow.


Janie 5 years ago

I found a book titled 'The breast reconstruction guidebook' by Kathy Steligo. It is very helpful ans spells out the options. I am having a bi-lat tram in June. Implants did not work for me.


Althea 5 years ago

I had tram flap reconstruction 3 weeks ago. My concern mostly is seroma. i have quite a build up and am worried i wont be able to go back to work in time.


sharon 5 years ago

I had right breast mastectomy and free tram flap reconstruction same time on 3/29/11. I was off morphine on 2nd day and walking on 3rd day. I got to go home after 6 days in the hospital. I had all the drains removed by second week. After the third week I was back at work. The fourth week I had the waist band removed (whew what a relief). The only problem I have is the stomach being sore at end of day and the stomach and breast being numb. Other than that I feel absolutely wonderful. I go in August to have the other breast reduced and lifted to match the reconstructed breast. Then I will be done hopefully. A good caring plastic surgeon makes a difference.


Misty 5 years ago

I have a friend who had stage II invasive BC. She had a single mastectomy w/ tram flap reconstruction and was only in the hospital 2 days. Within a week she was out with friends enjoying life. She was numb until a few days ago, but, other than that- she hasn't skipped a beat. Walking her german shepherd and getting her own groceries within the first 2 weeks of being home she was able to walk 2 miles, then wearing cute jeans and a belt 4 weeks post op with a cute sweater when we went for mimosas. She was able to return to work after 4 weeks off and at 6 weeks post op you would never know she had any type of surgery or cancer, but, she still has to see the radiologist to determine radiation treatment or not. She is doing great and honestly the only complaint she has had was the fact that she couldn't wear a bra for a few weeks. She can wear one now. LOL.


Misty 5 years ago

Her surgery was 9 weeks ago today. So it's different for everyone, I guess. She was only really down a couple weeks and then back to normal. Hang in there ladies!


Janie 5 years ago

Had a bi-lateral tram June 3rd. Still in a fair amount of pain. Was in the hospital for 5 days, ended up getting a blood transfusion. Glad it over and am in healing mode. The binder and masectomy bra are very restrictive. Implants failed for me a while back, so I went with this option. Although there are lots of scars and rawness at this point I finally feel like I like "noramal" again --- feels good.


Gail  5 years ago

I had bilateral tram on June 6th, home on the 8th. I was dx in 6/8/09 with Stage 3 ILC, chemo, bilat mast & 28 rads, which was concluded on 4/19/10 so I'm over a year out. Has anyone had any burning under the breast where they were radiated? I'm in week 3 from the surgery & can't stand anything touching the skin, much like the radiation burn I got, but the skin looks fine. Other than that, I'm very pleased with the results!


Tammy 5 years ago

I am scheduled to have bilateral and tram in three weeks. Reading all this on the internet has caused me quite a bit of concern. I was told that I would be out of work 8 weeks - full recovery, but feel that this is a bit optimistic. I see the hospital stay times varies -- i would like to play a more active role in the process. so here are my questions, i live alone and will be getting a nurse come once a day, would i need a nurse at least twice a day. i have no family that lives near me and at this point, it is hard for remaining family to travel. any suggestions asided from reclining chair, frozen and quick meals, nurse? i want to


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Hi Tammy,

I would tell you to have help available once you go home, but not everyone has the support. I've met others who had gone through most of the recovery on their own because they also didn't have more family support. If you're going to have a nurse come in once a day, your needs will change over the weeks. At first, everything is going to be difficult, painful. Do not pick up anything heavier than a newspaper; that's what they told me. You'll need help getting up (out of bed, out of chairs), taking a shower, getting food, going to the bathroom. And as you start feeling better and moving around more, having someone prepare your meals and do laundry, etc. is what you'll need. Maybe I'm just high maintenance, but I needed a lot of help in the first few weeks. I was a little scared when my husband returned to work, but I also had friends and family checking up on me, and my eldest son was a huge help when Mark wasn't around.

If you have friends who can offer meals or little bits of help, it's time to ask. If you belong to a church of some kind, ask for help. You'll be glad that you did. Otherwise, freeze easy, prepared meals or have a lot of delivery menus handy.

I'm amazed they told you a full recovery in 8 weeks. My doctors would only repeat the mantra, everyone is different. You'll be able to do most things at the end of 8 weeks, but your body won't start feeling back to normal for a long time after that.

Let me know how it goes.

I hope everything goes well for you.


Tammy 5 years ago

Thank you Joelle for the information. I pray that everything will work out. I have a 13 year old daughter and she understnds that I will have surgery and has offered to cook, laundry and clean while I am recouping. I think between the two of us, we might be fine, but will definitely reach out to my "friends" for any assistance. I will let you know when I am done with the procedure. This forum helps me a lot.


Janie 5 years ago

My bi-lat tram was almost 5 weeks ago. I am healing but do not think I will be back to normal or work at 8 weeks. I am getting around slowly but surely, standing in one place like the cooking bothers me. I would try to stock up on meals and buy extra clothes so laundry isn't a big issue. My husband has been helful, but it is a strain on him doing 'everthing" Also my MD told me to buy some 'spanx' shirts - I bought the target brand. They help keep compression in addition to the binder to reduce swelling. They are hard to put on but boy they sure do enhance your new figure. I have an RN that comes once a week in addition to my weekly MD appts - she is a God send --- her professional support is very helpful. Other than the pain and some drainage from my new belly button I am doing okay. Just a longer recovery than I expected. Best wishes.


Tammy 5 years ago

You guys are great with suggestions. I purchased a recliner, and a backscratcher because I totally agree that I will need it the minute I am alone. I am fortunate that my job will allow me to work from home when my senses clear up - that was my 8 week reference. I have already prepared several meals and froze them, totally overstocked my cabinets and have the delivery menus are well within reach. I found a supermarket that delivers so milk and juice will not be a problem.

I think the only concern is the drains because I don't know how long they will have to stay in place. Other than that, I think that I am a strong woman and pretty self-sufficient but it didn't help to swallow some pride and get a list of friends who committed to visit on set days to check up on me. One thing that this experience has taught me is that I need to get more involved in the community, especially the local church. I think the timing of moving to this town; then receiving the news all within a six month period will be a test or testament to how I handle the challenge and move forward. I tend not to be a complainer, more of a planner ensuring I covered all my basis to make sure when I get home, I won't caught out there too bad.

If anyone can help me with the answer about the drains, I would appreciate it. Also, it seems as though I will have weekly doctor appointments so I have to make arrangements for those. Hopefully the weekly doctor appointments won't go longer than 3 in a row.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Tammy,

I'm impressed by all your preparations. That's great you can work from home. I agree, this experience puts a fire under one's ass to get involved in their community.

I wish I could tell you more about the drains. Some of mine were removed pretty quickly while others stayed in for several weeks. It just depends on how much liquid (blood) your body produces in the area of the drain. As much as you want to have the drains taken out, I must admit, I did get used to having them in.


Janie 5 years ago

Tammy-- the drains are not fun, but not a big deal either. You have to empty them and measure and record the output. I pinned them to my binder and tucked them into my sweatpants. If you pin them to you pants just make sure to unpin before you go to the bathroom --- you only make that mistake once. In the whole scheme of things the drains are not a huge deal, in my opinion. You get used to them and deal with it.


Tammy 5 years ago

Thanks Janie - i will go forward with a positive attitude. My surgery is now 8/3 and I am exhausted already. Hopefully all my prep will pay off. Talk to y'all soon


tammy 5 years ago

I had my surgery and it did not go as smoothly as I wanted it, despite all my preparation. While in the hospital I had to receive blood tranfusions (4). I did get to stay in the hospital for 5 days though. All the meals I prepared are of no use because I do not have an appetite and have lost 40 pounds already (it has been 14 days since surgery). I have to find foods that do not disagree with me as I keep throwing up regular meals.

On top of all this, I have infections in both breasts and doc is conferring with infectious disease to figure out how to properly treat. I still have one drain remaining (which is infected) It was recommended oxygen therapy to help heal the wounds and I have appointments to see those specialists next week. You guys were right, I am spending a lot of time running back and forth to doctor appoints.

The good news - physically I did not feel as bad with the incisions. i was able to move my arms and walk around within a week with too much effort. I still need the go ahead for a desperately needed shower, but with the breasts infected, I fear that won't come for some time now.

I will keep all updated


janie 5 years ago

Tammy--- I have been wondering about you. I had a transufion and infection as well. I was on IV Antibiotics for 5 weeks and was intially readmitted to the hospital about 1 month after the intial surgery. Getting PICC line out soon. Keep your game face on --- you'll get through it. I lost about 20 lbs, I ate a ton of soup, also had to start using protien shakes ( I bought a vegan powder because ensure has a ton of soy in it and have to avoid soy due my ca being ER+) because I became malnourished. Stay strong!


Tammy 5 years ago

Thanks Janie. I am glad that I am not the only person experiencing this - I got a PICC line put in on the 19th and scheduled to be in for 4 weeks. It has been an uphill battle, but my mental state is that I will beat this and come out on top. You stay strong too - we are closer to the end at this point that the beginning.


janie 5 years ago

Tammy- glad to see an update. Yes, you will come out on top, stay strong and follow MD orders. I am doing pretty well now, PICC line is out, and things are slowly getting back to normal. I hope to return to work in the next couple of weeks. Take care - keep your game face on!


Lottie Bethea 5 years ago

I had stage I breast cancer and bilateral mastectomy with removal of some lymph nodes in November of 2009. On July of 2011, I had TRAM flap surgery. I have open wounds that are just now starting to heal with the help of a wound vac pump. I wish I had found this site before my susrgery. I will never have another procedure done after I am healed from this. It is painful, the blisters I got after the surgery were awful, and one is still healing after being debrided. I spent 4 days in the hospital, and have been sleeping in my recliner ever since I came home. My abdominal incision is also open, and because some of the mesh became exposed a week ago, the home health care nurse opted to be safe rather than sorry. (Something I appreciate, but damn, I want to get healed and get back to my life) I am back to saline dressings until at least after I see my surgeon on the 12th of September. I am hoping to get back to work by October, but its not looking very likely. The best advice I could give anyone doing this is to make sure that you have plenty of help!


janie 5 years ago

Hi Lottie - it will get better. I went back to work after about 3 months. It is a huge surgery, I did not expect complications either, but afer all is said and done, I am glad I went thru with it. You'll get thru it, just be patient with yourself.


Jean 5 years ago

I'm having a bilateral tram flap done in one week. Reading all you stories helps me to know what I might expect. I'm know there may be problems but I know I'll get through it. I have every confidence in my PS.


Joelle Burnette profile image

Joelle Burnette 5 years ago Author

Hi Jean,

I'm glad my story helps. I hope everything works out for the best.

Joelle


Jean 5 years ago

OK, what I didn't see coming is a delay. Evedently my insurance and the Dr. didn't communicate well. The surgery has been canceled until the approval comes in. (the insurance company requested more information from the DR but the Dr didn't get back to them until Friday afternoon!)I am so disappointed. I have no idea when I will be rescheduled. I'm trying to "keep my chin up" but it's so hard. I've had this date for 4 months and now this!


Tammy 4 years ago

I am finally ready to go back to work next week. After three months. As mentioned above, I had several complications, tranfusions and then to top it all off, fat necrosis in the belly area, which the doctor is taking care of this week by doing an incision and letting it "bleed" out. My belly feels much better that he made the preliminary incision. In the next couple of days he will do it again and we will monitor it, but the process will not stop me from returning to work on time. I wish everyone luck and one piece of advice -please ask as many questions as you can. For a while I was feeling that something was not right with my belly and the incision across the bikini line kept opening and they were closing it with aquacel and gauge pads (which worked for a while), but then he finally addressed it differently and it is working out much better. I can actually sit without feeling the hardness of the stomach and this is after the incision today. If only I would have been more forceful with my questions and articulated my concerns, I would be 100% now. Thanks for all the support - it really helped to talk to someone who was going through or about to through my experience.


Jane 4 years ago

Hi Lotte - It will get better but I can understand your concerns and frustration. I ended up being in hospital for 5 weeks after having a masectomy and trans flap reconstruction. Unfortunately both my abdominal and breast wounds got infected and needed debridement - what a pain carrying the vac pac around for a further 4 weeks. Can say it is now getting better - would I do it again - well yes...... others that had the same op did not have any complications so we basically have to make th choice. hope you are now well - I still have a few months - as others before being fully fit - but getting ther :)


Margaret 4 years ago

Last August, I had my TRAM flap surgery to remove DCIS, and am on 7th week now. Feels like something behind my navel inside, is pulling the umbicial cord very tight. Feels like I have a foot by a foot of mesh inside me. Very uncomfortable. Once a while, I feel the shooting of pain from right breast to abdomen area. I go to physical therapy weekly to help to loose up the tightness feeling and getting blood flow going on right breast. I am still on 95% upright and my back gets tired or hurt after long day. This is the most discomfort feeling I ever had in my life. Had headaches, flu, colds, root canal and you name it, but nothing as worst as this. Was told it take a year to feel 100% myself. 2 years for some people. When I sit or lay down in chairs or bed, I feel normal. As soon as I get up and it reminds me of my surgery. Have the "pulling-down" sensations every time I get up. I have one more surgery to go to make corrections, a nipple reconstruction and a tattoo coloring. I can't wait for the day to arrive when I am completely free of all pain, discomfort and tightness. I am not ready to work in my currently condition and not being able to keep up with fast-paced work enviroments and demands. It is going to be a long shot. My doctors said it will pay off in long run, cuZ I don't have to go back to OR for replacements and TRAM flaps are cadillacs of other types of breast surgeries. It is good to read your comments and your experiences. If anyone know a way to remove the tightness at snap of fingers, please post!


janie 4 years ago

I am a little over 4 months post op. I feel pretty good, but there is still sorness in my abdomen. A TRAM and Bi-lateral TRAM are HUGE surgeries, and it just takes a while to recover. I was on the couch most of the summer, and had complications too. It was hard for me to realize that I just had to let nature take it course on healing. I thought I could be an over achevier on healing, but my body set the schedule. I echo the comments made above by Tammy -- ask your surgeon lots of questions and if possible have an advocate with you for all appointments.


Jean 4 years ago

I had my surgery on Oct 5. Everything was fine for a few weeks and then I started with problems on the belly incisions, including a staph infection. After 3 weeks of wet to dry dressings,I was told today I can begin the wound vac. I'm so happy to be making this step forward. There is still alot of healing to do but at least I'm on the right road!


Tammy 4 years ago

Hi Jean,

Sorry to hear about the infections - I too had a staph infection and went to the wound vac. The wound vac worked miracles and it help heal the infection. All i can say is be patient and in time you will be OK.


Deborah 4 years ago

Hello,

I'm so thankful for all of this info, I am having a bi-lateral mascectomy than tram flap all in one go.In April 2012.

This may sound like an odd question, because of such difficulty going to the bathroom, especially right after surgery, do they put in a catheter while in hospital?

Thanks


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

Hi Deborah,

Yes. Until you can get out of bed and walk to the toilet...at least, that's what they did for me.

I hope everything goes well for you.

Joelle


JANET POMPONIO 4 years ago

HI ALL..I NEED HELP AFTER 13 YEARS. I HAD THIS SURGERY AND HAVE NEVER BEEN THE SAME. I HAVE SO MUCH SCAR TISSUE. I WILL NEVER WEAR A BRA AGAIN BECAUSE OF THE PAIN AND BULGING UNDER THE BREAST AREA. DOES ANYONE KNOW WHERE I CAN GO TO ON THE INTERNET FOR PEOPLE WHO THIS SURGERY WENT AWFUL FOR. 13 YEARS LATER AND I STILL HAVE DISCOMFORT AND SOMEDAYS DAOWN RIGHT PAIN ALL THE TIME. WANT TO KNOW AFTER ALL THESE YEARS IF THERE IS ANYTHING THAT CAN HELP ME. WISHING I NEVER DID THIS. I DONT KNOW IF MY DOCTOR JUST SUCKED OR IF THIS HAPPENS. I NEED A GROUP TO TALK TO AND GET INFO AND MAYBE JUST VENT...THANK YOU ALL SO MUCH. GOD BLESS ALL YOU STRONG AND BRAVE WOMEN.....JANET POMPONIO...E MAIL..MOOKIELAMO@AOL.COM......


Betsy 4 years ago

Hello everyone,

I am having a bilateral mastectomy and TRAM surgery this coming wednesday. Your chat has helped me understand so much more about this. I had a lumpectomy and radiation 16 years ago, and it has returned. We have caught it early, and I chose to have both removed. I can't do implants because of my previous radiation.

Thank you all for your posts, and Joelle thank you for your diary of your surgery. This is what I have been looking for as what to expect. I just rented a power recliner from a local rental place, and I think this is going to work out great for me after reading your blog.

All of you women are wonderful, and courageous. God bless you all.


PJ 4 years ago

I have been contemplating a TRAM flap for a year and have decided to go for it (had mastectomy in 1973 at 25). Your info has been far more than helpful. Thanks to all the women here who asked great questions and gave useful advise.


Betsy 4 years ago

It has been 2 weeks since my surgery. Everything looks very good, and the doctor is very happy. There has been one complication, it appears a hematoma has developed, that was the day after the surgery. It is about as big as a grapefruit, under my left breast. I am scheduled for a CT scan next wednesday and probably drain it. Since I am very tight still in my stomach area, this has made it somewhat difficult and is slowing me down a bit. Has anyone else experienced this? Other then this issue, and a few minor complications, I am amazed at how well I am getting around, and so is everyone else. I am walking straight, considering the hematoma issue. I do tire easily, and am only good for a couple of hours, then nap time. I did have help the first week, and now they have left, and I am capable of doing more on my own, I am getting alot more rest then I did the first week. I am very happy with the appearance of my breasts. I went from a C cup to an A cup since I didn't have much fat on my stomach, which I am fine with at my age of 50, good with smaller girls :) I did have a big spot of dead skin on my right breast from my previous radiation, but they were still able to save my nipples, partial aerola on my right, and all on my left. They plan on tattooing my right one to correct it when it has healed.

So ladies, so far so good. Its not easy, but we are all fighters, and we will beat this. I did have some good news last week, that my BRCA testing came back negative, so I thank the great spirit that I will not pass this onto my children and granddaugther. I will take the pain for them, so they never have to experience it in there lifetimes.

God Bless you all, stay strong, we will survive.


Frances Lyons 4 years ago

I had my Tram Flap op, 3 weeks ago, still on pain medication but doing ok. I have an incredible itch under the skin on the breast where the tram flap was inserted. The itch is driving me nuts as I cannot scratch it. Any advice?


Rita 4 years ago

I'm a 26 year old woman and am due for a double mastectomy within the next 3 month (no date set yet!) I have been scouring religiously on the internet trying to read testimonials from other women who have experienced not only having a mastectomy but also those who have gone through the Tram Flap. I will be undergoing this procedure simultaneously with the double mastectomy and I'm so nervous. I have two young daughters, a 21 month old and an 8 year old. I don't want to be out of sorts when it comes to taking care of my children but I know it will happen. Do any of you women have young children like I do? And how did you cope with recovery whilst having your young ones around? My 20month girl is very clingy to mummy and it'll be so difficult during the recovery process! I have few months to tough it out, hopefully get her used to mummy not being so 'hands on'. Any advice on this?

You are ALL amazing and this thread is such a Godsend. Thank you Joelle for starting this up!

Rita xo


janie 4 years ago

Rita--

When I had my proceedures my son was 10, not nearly as youg as your childern. Luckily many people offered to help me, and my husband really stepped up to the plate. Believe it or not I also dervived a lot of strength from my son. Everytime I looked at him, I thought I've got to recover from this disease and surgery. I went thru chemo too. It is a long road, just pace yourself, and when people offer to help you let them. The recovery will be much smoother if you can rest in the begining.Get as many things done before your surgery as possible, also know that things that you never thought of will occur. I bet your children will amaze you with their compassion and will help you heal in their own way. Set the expectation with them that you will need them to help you in a way they will understand. My son gave me all his cartoon videos to watch while I was laying on the couch, he told me to watch Scooby Doo first. Just put your "game face" on and you'll persevere. Best wishes.


janie 4 years ago

Many thanks to Joelle for this thread it was very helpful to me as well. I meant to say that in my previous comment.


Jenny 4 years ago

Im 37 and BRCA2+- Still struggling with which route to go: TRAM vs Implants. Id love the free tummy tuck but the thought of never doing situps again is scary. Anyone who has had a TRAM please let me know if you can do exercises that involove your abs?


Carolyn 4 years ago

Thanks very much for the information, Joelle and everyone else. I'm a single parent of two children aged 9 and 11 and am due to have a pedicled TRAM flap in a weeks time, after having a left side mastectomy in March 2011. In reading all your posts, I think I have underestimated the amount of help that I will need post surgery! Will definitely get a back scratcher!


Kerry 4 years ago

Hi everyone, I just had my double tram flap in dec 2011 and still having pain after working a 12 hour day i am still very sore. does anyone else feel this way? still sore under my breasts they replaced. thank u!!


Jackie 4 years ago

I had my bi-lateral tram flap surgery in Feb. 2012. I read your blog before the surgery and it helped me tremendously emotionally. Like you said everyone is different. My surgery went for 17 hours. My family told me they were basket cases waiting. The first two weeks of recovery are viscous. But I am now going on 3 1/2 months out and I feel much better! There is a light at the end of the tunnel. My doctor said lt would take about 9 months to a year for all of the swelling to go down. Did anyone else have small mound for their. abdomen? Don't get me wrong. It is much smaller than it was. I just expected it to be completely flat.


Linaust 4 years ago

I am 65 years old and scheduled for my flap delay surgery on June 4th and my tram flap surgery scheduled 7 days later on June 11. The flap delay is being done as an outpatient and the tram flap surgery inpatient with approx 4 to 5 day hospital stay. I so much appreciate all of your postings and especially Joelle's experiences which have given me so much more insight into what to expect.

My right brest mastectomy was done when I was 59 and I have waited this long to have my reconstruction. Approx 3 months after the tram flap surgery I will have my existing brest lifted and following that will be nipple reconstruction, that is, if I don't chicken out from any additional surgery.

I still work and am hoping to be able to go back after 8 weeks from my initial flap delay surgery.

Any words of wisdom would be greatly appreciated. I am very fearful at this time!


Arlette 4 years ago

I have just had tram flag surgery after mastectomy of my right breast, all at the same time, nearly 4 weeks ago. Nearly walking all straight now :-). Still on painkillers and sleeping intermittently at night, waking up about every 2 hours to turn side. At least I am able to sleep on my side now ! 5 days in hospital and the first 3 days at home, sleeping on my back, very uncomfortable. Getting better everyday and hoping to get back to work in 3 weeks from now, just want to be able to do all the things I was used to prior surgery, i.e working parttime and 3 kids. Kids and husband have been wonderful. Friends had set up a rotating meal service. It made the recovery so much easier with all this help......huge thank to all of them.

It's a tough road but do-able. Thinking of all you having to go through this...you can do it !!!!!


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

To all my readers...

I hope you will buy my book, "Cancer Time Bomb: How the BRCA Gene Stole My Tits and Eggs." It tells the entire story about this experience and my life and family. And yes, the title is as honest and straight-forward as the story (would you expect any less from me?)

It's selling on Amazon.com.

HubPages won't let me post a story about the book because they say it is too self-promoting. Well, of course I want to promote it.

So please, read it, tell your friends to read it, and pass it on.

Thanks again for reading about my BRCA journey.

Joelle


Linaust 4 years ago

Arlette, Your post has given me a boost. So glad to hear you are able to get to lay on your side. I am a side sleeper and am dreading having to sleep on my back in an elevated position. So happy to hear that you are getting better every day and planning to resume work in three weeks. My best to you. Linda


patsy 4 years ago

I had a mastectomy and tram flap surgery about 7 years ago. It was a 8 hour operation but 20 minutes or 8 hours I never knew the difference. The danger is going under and coming out, not how long you stay under anesthetics. I developed a infection and had some of the tissue removed and had an open wound which my dear husband cleaned and packed daily. I had many infections over the first 2 months. I had 3 times where I had injected antibiotics every 4 hours. The first two time I went into the hospital every 4 hours. The last time on antibiotics I had home care bring me the supplies and I did it myself. As well I was fighting with the beginnings of lymphodema. FYI there is a special massage to help the lypmh to move. It is a Dr. Vodder program, you would google who might be registered in or close to your home. I had at first worn a sleeve, gauntlet and tried this giant pump on my arm. At that time period the arm was my biggest issue as it weighed so much. I no longer have a serious issue as I went quickly for this treatment and have been taught how to help my lymph to drain. After all the healing, I started to notice issues with my neck, jaw and arm muscles. The side where the surgery occurred was developing horrible scar tissues as well the breast is too high up on my body. It through my normal alignment off and I started to have issues with this breast pulling everything to that side. I went in and had other breast raised up to see if it would help the balance. But the second breast is still a lot lower than the first one. I have a lot of physio. Neck issues, scar tissue issues in my armpit and belly. My belly cut was rough and ugly and is always a raw scar. I have this waddle of skin/fat that hungs under the scar. I call it my turkey waddle. I have a serious issue with clothing as the upper area was compressed up and I have this round ball for a tummy, my pants sag under this belly. I have to buy bigger baggy pants to accommodate the belly. I am about 40 pounds overweight and stand 4ft 10, so no place to go but out. I struggle with the pain and tightness in my armpit from the horrible scars caused from the lymph node removal and the tram flap. But I think I would still tram flap again, but I would insist on items such as having some sculpting done in the belly area. I am trying to get to see a surgeon (my guy move) about having the scar removed and to try and flatten out the belly. We shall see how that work


Elaine Magliocca 4 years ago

Dear Friend,

I am presently recovering from a unilateral masectomy, with TRAM flap reconstruction. I appreciate reading the info. in this posting. Thank you so much for sharing it! I am now nearly two months post op. I am still glad that I chose this particular procedure, it was/is definitely the best choice for me. However, I have to say it has been something that has taken strength, courage and most of all patience. Patience with myself and the recovery process that I find can be quite tedious. I am "healing beautifully", per my plastic surgeon. But noone could have prepared me for the tightness in my stomach and the sensation of a moderate sunburn on the stomach skin and my breast. Crazy as it may sound, those two things present me with the most challenge as they make dressing difficult and also standing straight. Somedays I fear I will never be "normal" again. Oh, I know I will be but the process is a long one. So my advise to myself and to others: Be kind to yourself. Be patient with the process and, heck yes, use the electric wheel chairs at the grocery store and Walmart!! :)


Penny Brooks 4 years ago

Hi, I am three weeks post op after having right mastectomy and free tram flap undertaken for DCIS. Your comments have been really useful in helping me understand and accept some of the limitations I am experiencing ! I am still having lots of pain and difficulty in walking except really short distances ....like into the garden! The worst thing is the tightness over my abdomen which drives me to distraction , any tips would be gratefully received! Penny ( England )


Jacki 4 years ago

I am 17 days post op after having bilateral mastectomy and immediate TRAM Flap reconstruction. My surgery was 4 1/2 hours (was told to expect 8) and I was released from the hospital the next day.(expected 4 or 5 days) I feel blessed beyond belief. Physically, im feeling remarkably good, however it does feel like I have 2 cantaloupes attached to my chest with no support, so when I walk I hold them! Fatigue from anemia and Sleeping are my biggest challenges and I appreciate your tips. Overall, I am so thankful to live in a time when this procedure is available.


Arlette 4 years ago

Hi, me again :-). To Linaust, glad my story was helpful to you ! You've probably had the surgery now and I hope you are recovering well.

To the rest, It's been 3 months now and I've had my consult for nipple reconstruction and lift of the other breast. If I'm not doing it straight after, I probably won't do it and I will regret that for ever. But to be honest I'm over hospitals and doctors, despite the fact you can't flaunt them, they've been incredible! Not sure what the date will be, but probably somewhere September.......let's get it over with :-)

Anyway, I want to say I feel absolutely blessed and fantastic now. Back at work and most of all back on the bike ! I LOVE mtb and I'm doing exactly that.........absolute bliss :-). I'm still very tight especially at night after a full day of activities, work, walk the dog, kids stuff, but generally speeking I feel fine again! The tight feeling will last for a while and I'm counting on what my plastic surgeon told me, a year at least for it to go.

Alltogether, I can say that I wouldn't have it any other way. It's been a very good decision, despite the hard road........but we're a strong specie ;-). So for everyone who's nervous about the procedure, understandably as I was too, you can do it! Any questions you may have, shoot and I'll try an reply :-). All the best!!


Linaust 4 years ago

Arlette...How good to hear from you again. I did have my tram flap on the 11th of June and am going back to work tomorrow. I have been doing great. I absolutely love my new breast and flat stomach!!!!!

To all of you considering the tram flap reconstruction....go for it. Just have the time alloted for your recuperation. I feel up to going back to work after being home for 8 weeks. Slowly but surely you will gain your strength, the pain will subside and you will be able to resume your normal life.

I am also scheduled for my nipple reconstruction and the lift of my natural breast. This should be happening Sept 21st as long as I can get the additional time off of work. The surgeon said this is done as an outpatient procedure and I should only need to be out of work for approx. 1 week.

Arl;ette, keep up updated on your progress with the nipple reconstruction and lift.

All my good wishes to all contemplating this surgery!!!!!!!!!!!

Linda


Arlette 4 years ago

Hi Linda, that's absolutely great news :-) ! Good girl!!!! I'll keep you updated on the nipple reconstruction and lift, but you may be quicker than I am. Still waiting on the actual costs, so I can ask for pre-approval from insurance....:-(


Becky 4 years ago

I also have the BRCA Gene (passed on from my dad who died of breast cancer 5 years ago). His family has had a tough go with all of this for as long as I remember. I am 32, I had prophylactic Bilateral Mastectomy in 2009, in a nutshell and 9I surgeries later I am having a double TRAM done Oct 5, 2012. I am having the delayed procedure, so 5 weeks ago I had my hip to hip incision to cut blood supply to abdomen and I have healed fine. Your blog has given me so much insight to what else is in store for the next and hopefully last surgery I will have. I have been through alot, also a total hysterectomy along with ALL the surgeries, iron infusions, blood infusions, ect. I keep my head up and stay strong for my 4hip year old son who keeps me going. Please email me with any more info.which could help. Thank you so much, reading your blobs are like a parallel of my life ; ) bnorman79@yahoo.com


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

Hi Becky,

I'm so glad to hear you are on the mend. You've been through too much, but it will get better and you'll make it through to the day you start feeling good again.

Like you, it was my kids who kept me resolute about the whole process.

Let everyone here know how you are doing.

Thanks,

Joelle


martellawintek 3 years ago

hi matt if your still in need of them here is there link

and some info ,check out there great prices,tell them martells gift him out


Wilkens5 3 years ago

Hi All , I had a mastectomy on my right breast and reconstruction on the same day Nov 2012 . It's been 3 1/2 months. My breast feels soft except for the upper left corner which is still very hard. How long before it all feels soft ?

Also I still have an uncomfortable feeling around my belly button and stomach. Feels like I have a large piece of duck tape suck to the inside of my stomach.Is this a normal feeling ? Please advise .

Thanks


Joann 3 years ago

Hi Sisters....

Just wanted to thank you for this "blog" I only wish I would have found it prior to my surgery! I had bi-lateral mastectomy with immediate tram. Mine was from the 3rd bout with breast cancer same breast. Decided on bilateral as I felt I was too young to go keep going through the mental and physical stress, (wound up being the right decision as both had cancer). I agree completely about the chair! (I had spoken to one of my PS patients who suggested it) I rented one that had the remote that goes from recline to standing the best 200 I spent! Also, to anyone who thinks they shouldn't ask for the handicap, go for it! I did, my surgeon said no but my PS said the same thing "I've never had anyone ask" but he gave it to me and it was so helpful! I did walk during recovery but as she pointed out once you walked through the food store or any other you are beat and I was so happy the car was right there. Also, most malls offer wheelchairs you just have to get security and I just had to give my license. I also used those "motorized carts" in the food store. The Jackson Pratt drains are very important to keep accurate records also so the PS knows when they can be removed. My PS recommended Mederma to my scars, as it is expensive I found the cheapest place was Harmon you can use the $5 coupon for bed bath and beyond. I also found that for my dressings for my lower abdomen incision when I took the 4x4 unfolded and then folded it lengthwise twice went perfectly side to side and I only had to use a little bit of tape, this worked nicely as I have a huge sensitivity to tape.

***** I was wondering if anyone who may read this has had my experience...While I had a decent amount of tummy fat It wasn't enough to fill in all the area of breast my surgeon removed so about 3-4 weeks after my surgery the skin above my breast and toward my armpit has contracted against my chest wall. My PS has told me it does happen sometimes although he did say he had never seen one as drastic as mine, I still have swelling and under his instruction I have been massaging the areas (rub it like you love it- his words) to help loosen the skin I do have complete confidence in my PS but just haven't been able to talk to anyone that has had this problem and I would love to. ******

I haven't had my nipple reconstruction yet. I am hoping that goes ok as I seem to scar and have a little concern about how they will look. My belly button is scarred all the way around pretty thick. I would have called it a keloid but my PS said that a keloid is actually a tumor and what happened around my belly button is something different, but it is raised and I found out I can't have my naval pierced again :(

Anyway, was just wondering if anyone has had this happen or know someone and how did it turn out?

Thanks a bunch! Hope some of this helps...And remember...FIGHT LIKE A GIRL!!


christryon profile image

christryon 3 years ago

Excellent information. I HAD breast cancer and my Dr told me about ALL of the benefits of having Tram flap surgery since I had decided to follow her advice and have a double mastectomy and my ovaries removed due to having stage one, invasive, estrogen + cancer.

I am SOOOOOOOOO GLAD that I didn't have enough belly fat for the surgeon to do such a barbaric procedure! I decided NOT TO have reconstructive surgery at all and it was THE BEST decision that I MADE!


Melina 2 years ago

Hi Joelle,

I had a tram 15 months ago. The ''ick'' in my case has to do with the mesh s not being tight enough. I have a small football size bulge that requires a daily girdle to support the pressure caused by the fact that the intestines are pushing on the mesh. Do you have you any suggestions or heard of any similar situations and how it was handled?

thanks


Joelle Burnette profile image

Joelle Burnette 2 years ago Author

Hi Melina,

Yikes! Sounds like a horror flick movie line. I wouldn't know what to do about that other than press your surgeon to fix it, or find a better long-term solution. Or at the least get a second opinion from another TRAM surgeon. I think there's some class action lawsuit floating around having to do with some mesh issues. Otherwise, I'm not sure what else to do. Have your surgeons suggested another slice to dive back in and make a fix?

If you are on Facebook, there are some really great BRCA groups. Friend me at https://www.facebook.com/joelle.burnette.blog and I'll invite you from the groups...they are closed groups and many require approval by administrators to help keep everything private; very personal issues discussed.

Where did you have your surgeries? Who were your surgeons?

Joelle


Dana Hopkins profile image

Dana Hopkins 2 years ago

Hi Joelle, THANK YOU for what you share. I wish this info was more available 12 years ago. It is still true that medical professionals tout the benefits {tummy tuck?? really?} and gloss over the very real barbarism of this. I'm a 12 year BC survivor on March 1..and a 12 year TRAM survivor..after MRSA, nec faciitis,emergency surgery that had me briefly 'dead' on the table and 12 years of complications, I consider TRAM survivor the harder, scarier one. I had surgery in December to correct total pelvic prolapse {a common older TRAM complication} and in 2 weeks will have my old incision reopened again to correct herniation along the TRAM incision line, replace 'tired' old mesh & generally 'look around & fix things'. I am networked with other survivors of 'early' TRAM & Dortisimal Flap procedures. I'd love to chat with you... I am in the Bay Area. My original surgeries were at Stanford..now I am a patient of the Avon Breast Center at SF General/UCSF. I have sent you a friend request on FB. xox dana


Joelle Burnette profile image

Joelle Burnette 2 years ago Author

Dana tells a moving story at her FB page...glad to be friends. If other readers want to connect, we can chat on FB. Also, I have a new author FB page: https://www.facebook.com/Joelle.Burnette.Author ...my effort to consolidate all my book pages.

Thanks for reading!

Joelle


Johne434 2 years ago

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Scotty Cujo profile image

Scotty Cujo 11 months ago from Worcester, MA

I had a mastectomy and tram flap reconstruction on Oct 1, I wasn't prepared for everything when leaving the hospital but I just wanted out of there so bad I didn't care. I'm surprised at how little pain I was in, it was more emotional in regards to what I looked like , not being able to shower and to have the doctors tell you they still have to send the sample out for Onco Dx testing to determine your news for radiation or chemo is disheartening to say the least. I've stayed positive and just went into it with the attitude of its not worse than anything I've already been through.

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