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Breast Cancer at 35

Updated on October 19, 2015

Mastectomy Madness

Breast Cancer, mastectomy and flap reconstruction, Oh My! Breast cancer at my age? It never even crossed my mind. All of my doctors told me I was young and didn't have anything to worry about but suggested a biopsy to be overcautious. One of the top doctors at Dana Farber told me that if he had just gone by the standard breast exam he would've told me it was regular breast tissue. Diligence is imperative in catching breast cancer early. Early detection is the key to a higher survival rate and broader treatment options. 1 in 8 women will be diagnosed with breast cancer in their lifetime. And yet, I'm not the youngest to be diagnosed. The oncologist surgeon told me that just the week before she had a patient that was 22 years old!

Being faint of heart when it comes to hospitals, and everything that goes along with them, I was dreading the whole experience, the surgery itself, hospital stay. I was wrong. The worst of my whole experience were the first two days post op. I was extremely sick due to the anesthesia from the 11 hour surgery. I had drains coming out of my abdomen area as well as two drains coming out of my breast. My stomach was extremely sore, though everyone told me it looked great and really flat. Nurses constantly poking and prodding me with some new medication, my thighs are still bruised from the Heparin injections. Once i got over that hump, I realized i didn't feel that bad, for just having had a breast removed and my tummy ripped open. I opted for the flap reconstruction which essentially gave me the effect of having a tummy tuck. This was one side effect I wasn't complaining about.

Every hour on the hour they would check my vitals and listen to my breast with an ultrasound wand to ensure the veins and artery had a beat. This I found very uncomfortable, even though my breast was virtually void of the sense of touch after surgery there was something about knowing an object was on my breast and not being able to feel it that made me flinch. On the 2nd and 3rd night they started checking me every 2 hours and finally on the 4th night every 4 hours. Needless to say, sleep was a game of timing, my body would wake up right before it was nurse time. I was afraid the nurses would have the attitude of just be "doing their job" but I was surprised at how caring everyone was, they catered to anything you needed and were always asking what else would help make you comfortable.

The one thing i wasn't quite prepared for was how unattractive a mastectomy is.

1. No nipple - this amazed me, I just assumed you would get to keep your nipple. There are skin sparing and nipple sparing mastectomies but unfortunately this wasn't an option for me.

2. Drains, drains and more drains - little, grenade shaped plastic drains hanging down from a tube that went from my abdomen all the way to my ankles, wearing regular pants was not an option not to mention feeling like an alien in your own body. Stripping the drains came second nature to me really fast, I was counting down the days until the drains could be removed.

3. Not being able to shower, at all. Sponge baths were my new best friend, I wasn't cleared to take a real shower until all of the drains were removed. I had to wash my hair in the kitchen sink to avoid getting any of the incisions wet, leaning over the sink was awkward enough with having to maneuver your arms.

4. Abdominal pad - Think of it as an abdominal brace, bulky under your clothes and mildly uncomfortable after continuous wear. I'm stuck wearing one of these for a month.

5. Catheter - The catheter was only needed while in the hospital and luckily I was able to have mine removed on the second day. I have a newfound empathy when I see catheter commercials for the elderly.



Would you opt for a mastectomy or do the least invasive, lumpectomy?

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What did I do to cause this ?

I couldn't help but think I played some role in getting breast cancer, was it something I did, was it my diet? I hadn't been working out or taking the absolute best care of my body in the last few years, surely there must've been a connection. My cancer team assured me that this was not the case and they couldn't tell me why I got breast cancer, just that it wasn't anything I did. That was a relief to hear. I have no family history of breast cancer nor any history of any type of cancer in my family. I agreed to do the gene test to see if I carried either the BRCA1, BRCA2 gene, my BRCA2 came back as "variant of unknown significance" which basically means there is a change in the gene itself, they just don't have enough research to determine if this change is due to cancer or not. I took this into consideration for my treatment due to my age, the breast cancer just appearing out of nowhere. I also had other masses showing up on my breast MRI and rather than go for the painful MRI guided biopsy I opted for a mastectomy and the peace of mind that every last lump would be removed. Even if the masses turned out to be benign I would always have had to worry about them and I wanted to avoid any ongoing biopsies in the future. I know in my heart I made the right decision to get the mastectomy vs. lumpectomy and radiation.

Onco DX Test, I might need more treatment after all?

I received a call from the nurse navigator from my cancer team, not exactly the type of voicemail you want to hear after just having had a mastectomy. She explained they were sending the tumor out for Onco DX testing to measure the likelihood of the cancer coming back, and the likelihood of needing further treatment, i.e. radiation, chemotherapy, a mixture of the two or just hormone therapy. They base the need for this test on 3 factors:

1. Age -- because I'm under 40 and didn't fall into the typical breast cancer age range

2. Tumor Size -- they send out tumors that are 1 - 2 cm in size

3. Gene test results -- because I had the variant of unknown significance for the BRCA2 gene this prompted the test more so than if I had just had the latter requirements.

My first gut reaction was to call the nurse navigator back, what do you mean there's a chance I might need radiation and chemo and not just hormone therapy? I thought the whole point of going with the mastectomy was to avoid these more invasive follow up treatments. They use a scale to grade the tumor and if it receives a certain grade they can safely say

Yes , this has a high chance of recurring, most times in another part of the body such as the opposite breast, chest wall, lungs or very rarely the brain.

No, this tumor has a very low chance of coming back or increasing your average risk of breast cancer therefore radiation and chemotherapy wouldn't be beneficial

However, I am going into this open minded , not necessarily expecting the worst but I am planning for the possibility of needing further treatment other than hormone therapy. I do have a newly constructed breast that is still early into the healing process, radiation to this breast would need to be delayed and approved by my plastic surgeon. Little did I know, that even with a mastectomy there are tiny amounts of breast tissue that remain in your breast area and this is sometimes why they recommend radiation after a mastectomy. I didn't understand this fully in the initial appointments and thought radiation only mattered if I was going with just the lumpectomy. Radiation is 5 days a week, 10 minutes a day. It doesn't sound like a lot of time when you think about it but I can imagine cancer survivors who do radiation feel the mental drain of the 10 minute appointment, the drive to the hospital, finding parking at the hospital and the overall exhaustion that one gets from the radiation itself.

Do you do self breast exams ?

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Recovery, two weeks later

Today , Oct. 19, 2015, is 2 weeks to the day of my discharge from the hospital. I am a lot further along than I thought I would be, everything I researched and was told suggested I would be out of commission for at least 6 weeks. Though I'm not 100% I am feeling much like my normal self, I am able to get up and get around on my own. I do tire easily and find myself needing to take 3 - 4 hour naps most days, especially if I make a trip to the store.

My breast is still in the post op phase as is my abdomen, it will be about 6 months to a year before it settles into its final shape. It looks a lot better than imagined, I don't have a nasty scar on my breast, just a tiny incision in my armpit. Not having a nipple was the most discouraging at first but I have gotten used to the look. I'm unable to wear bras at the moment and I find myself pulling out my vests and looser fitting fall sweaters for this transition. My stomach is the flattest I've seen it since high school, all in all I am positive about my experience. The hospital staff commended me for my positive attitude and shared their experiences of past mastectomy patients and how my recovery was not the norm. I bounced back quickly and as soon as I saw a glimmer of being discharged that's all I could think about and I just kept getting up and pushing myself. The absolute earliest I could've gone home was Monday, Oct 5, 2015 and that morning I was cleared to go home. If you had told me the day after my mastectomy that I'd be going home on Monday I would've been a little doubtful. It's amazing what a positive attitude and support system can do for the healing and recovery process.

Educate yourself, research anything and everything having to do with your particular procedure, visit sites like www.breastcancer.org or the American Cancer Society's webpage, www.cancer.org.

The Road Ahead

Being a survivor is more than just conquering cancer, it is finding your inner strength that is going to carry you into your next phase of recovery. October is Breast Cancer Awareness month but for a breast cancer survivor Breast Cancer Awareness is everyday. I never was much of a pink girl before but I do find myself gravitating towards pink nail polish, pink jewelry and I have more of an understanding why I wear these items or color. I'm unsure what further treatment is in store for me but I know I will confront it with the same strength and attitude that I've had and am confident this will soon be a distant memory.



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    • Scotty Cujo profile image
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      Nikki 2 years ago from Worcester, MA

      Thanks Jess , it's been a good experience for me so far considering what I was expecting

    • profile image

      Jessica P 2 years ago

      Wow. Well said, thank you for your courage and candor in sharing such a personal experience! Thinking of you!