Breast Cancer- Self Management Strategies After Mastectomy or Lumpectomy Surgery

 

Ten years ago I was a pediatric occupational therapist and knew nothing at all about caring for clients after surgery for breast cancer. Four years ago I was the de facto expert in my clinic. Even physical therapy consults were converted, and post-mastectomy clients were scheduled to me. How did this happen? Well, I had a great technician who was an expert in wound healing. I consulted PTs if I needed to. And I listened to clients’ problems and concerns. Over time, I grouped and sorted and came up with a few areas that seem universally relevant for clients after mastectomy or lumpectomy.

 

Normal Breast

Source

 

MY LIST FOR EDUCATION AND THERAPY

Resuming activity

Range of Motion

Scar Management

Scar Massage

Sensory Re-Education

Lymphedema Prevention

General Strategies

Compression Sleeve

Lymphedema Care

 

GUIDELINES FOR EXERCISES AND RESUMING ACTIVITY

The key here is that too much activity too soon, including range of motion (ROM) exercises, can cause overall increase in scarring and scar thickening. Physicians and surgeons often say “Just do what you can do” and clients think they should return to most of their typical activities of daily living (ADL). Many do too much too soon, especially with housework because they are at home and have not yet returned to work. You are home for convalescence, not on scheduled vacation for spring cleaning!

Source

SHOULDER RANGE OF MOTION

Most clients, regardless of whether they had lumpectomy, mastectomy or lymph node excision, are too tender to begin ROM for at least 3-4 days. I have not found it to negatively impact outcomes to wait 5-10 days before beginning structured ROM.

ROM returns quickly for some clients with no special efforts or no therapy. Other clients regain previous baseline ROM over a period of a few months. It is important to examine ROM to ensure that previous level of motion returns.

Clients with a history of frozen shoulder or diabetes are at higher risk for decreased ROM. Decreased ROM which is unknown to the client and the medical team can delay radiation therapy. At my facility a minority of clients had radiation, and then usually after one or two rounds of chemotherapy. By this time months have passed since the surgery and the ROM deficit is unknown. The client cannot get their arm in the required position for their treatments. They are then referred to therapy and cannot begin their radiation until they can get their arm over their head.

I start my clients off with pendulums, cane, pulley, wall walk and table slides. It is beyond the scope of this hub to discuss specific range of motion exercises.

Given a 0 to 10 pain scale, ROM exercises should be done to no greater than a 1 to 3 of 10 pain increase from baseline discomfort. Discomfort is almost always caused by pulling to incisions or scars, not shoulder joint stiffness. Better to do a few repetitions or a few minutes, spread throughout the day to avoid increased discomfort from exercises. Imagine exercising 45 minutes, 2 times a day, versus 15 minutes 6 times a day. Which would more likely result in an increase in soreness or swelling?

SCAR MANAGEMENT

PURPOSE of SCAR MASSAGE

Release or minimize adhesions (areas where the skin is scarred down, stuck to underlying tissues).

Mobilize the soft tissues so that they do not interfere with motion.

Reduce scar tissue in the early months when it is still ‘changeable’, pliable or ‘re-moldable’, especially if considering reconstruction.

Enhance appearance of scars.

SCAR MASSAGE

Scar massage may not be tolerated for several weeks after surgery. Starting 3 to 10 days after surgery, gently touch the area around the incision with a Q-tip. The flesh around incision scars may remain tender for several weeks. Advance from light pressure with a Q-tip to touch pressure with several fingers, making a broad, flat surface area with several fingers, with moderate pressure as tolerated. Use gentle rocking movement of fingers as tolerated.

Begin more localized, targeted massage with increased pressure multiple times throughout the day when tolerated. As tissues heal and tenderness subsides, begin more rigorous and targeted scar massage using the tips of the index and middle fingers. Do scar massage as many times a day as possible. In our clinic we dispense a product called Dycem to help grip the skin for scar massage.

Use caution in working on adhesions. Too much too soon, i.e. premature release of the scar adhesion, would be like creating a new laceration under the skin.

I do not recommend lotions until skin is closed and healed, or use lotion only on healed areas. Many clinicians prefer Palmer’s Cocoa Butter, lotions with vitamin E, or vitamin E capsules (squeeze out the oil). Small bottles of vitamin E are now available. It is inexpensive and shelved with the oral vitamins and supplements. Any preferred lotion may be used. This is a long term endeavor, use some variety!

Silicone products help with scar healing. Mepiform, or over-the-counter products like Mederma, help make scars softer and more moldable. I like to use Topigel or CecaCare with thicker scars. These products are quite expensive. We dispensed them to patients at our clinic.

The mastectomy scars are the most likely to become thick or hypertrophic. Additionally they often present similar to a Carpal Tunnel Release scar: Scar itself may look and feel appropriate to the timeline from surgery, but there may be multiple or numerous knobby areas under the skin on either side of the scar. This is especially true at either end of the scar. In both populations this is usually due to the previously mentioned “Just do what you can do” phenomena, with clients returning to too much activity too soon. I like the Topigel or CecaCare for these scars. Good scar management is especially important if reconstruction is planned for a later date.

Mepiform is usually fine for the smaller, thinner scars, which is often the case with the port placement and drain scars. The lumpectomy scars can go either way.

The incisions after breast reconstruction usually do pretty well. They usually are thin, sometimes w/ the knobby areas. The Plastic Surgeons are usually very specific with their clients on restrictions and recommendations, including such things as sports bra specifics.

Abdominal scars, the donor site for some reconstructions, tend to be hypertrophic &/or have the knobby areas. These require a significant amount of silicone products, which may exceed clinic resources. Patients then just use lotions and oils.

SENSORY REEDUCATION

 

Sensory re-education strategies help ‘normalize’ sensation.

In general, thick scars and hyposensitivity, or decreased sensation are more common with mastectomy scars. Clients often note numbness or dull sensation or “fat feeling” to the inside &/or back of the upper arm. Decreased sensation is also often reported to the armpit, even if incisions do not extend into the armpit. (Armpit incisions are common for retrieving lymph nodes.)

Use visual and mental attention during sensory activities such as scar massage. Massage with or without lotion. Use different textures and pressures to access the brain’s memory of sensations.

Hypersensitivity refers to increased sensation or being overly sensitive. These issues are more common with port and drain incisions. If extremely sensitive, use of distraction may be helpful, such as favorite music, fragrances or shower. When hypersensitivity subsides, use visual and mental attention to access brain’s memory of sensations.

I think of sensory re-education for hypersensitivity in terms of ‘geography’, amount of touch pressure, and type of touch texture. Use fingers or a soft fabric, and ‘zone’ the total geographic area of hypersensitivity, therefore identifying where it is tolerable to touch. Start working at the outermost boundaries with the pressure and texture tolerated. Use fingers, soft velveteen, soft fabric like slip or camisole, cotton balls, or other tolerated texture. Discomfort should be no more than a 1 to 3 of 10 increase above baseline discomfort.

It will not be the goal to go in to ‘ground zero’ each session. Our goal is to increase the range of textures and pressures tolerated &/or decrease the total surface area of touch hypersensitivity over time.

LYMPHEDEMA PREVENTION

There are a few key points of general lymphedema prevention. Things to avoid to surgical side or side with the greater number of lymph nodes excised:

shots/immunizations

blood draws

blood pressure checks

sun exposure

exposure to insect bites

This is not absolute. In emergency situations you may have to have blood pressure checked or blood drawn from the arm of your breast cancer surgery side.

A compression sleeve is recommended for lymphedema prevention. Even with a single sentinel node or minimal nodes excised, a sleeve should be worn for air travel. Sleeve should also be worn when outdoors or otherwise exposed to prolonged sun or insects, or if prolonged exposure is possible or likely. Use sunscreen, insect repellant, compression sleeve and long sleeve shirt. An off the shelf product is fine for these purposes, if you can find one to fit.

The greater the number of lymph nodes removed, the greater the need for a sleeve and other prevention measures. When surgeons note they removed ‘all accessible nodes’, this is usually 22-25 lymph nodes. It doesn’t matter how many nodes, if any have cancer. The point is, how many of your available scavengers did you lose? My index of concern increases after about 12 nodes. This is the point where I would recommend putting on the sleeve on waking and wearing it most of the day for at least 3-6 months. With all accessible nodes removed, I would recommend all day wear for at least 6-12 months.

With a greater number of nodes removed, more compression is indicated than available with off the shelf sleeves.  I sent many of my clients for custom made compression sleeves.  Additionally gloves or gauntlets may be needed to prevent swelling from shifting down into the hand. 

LYMPHEDEMA

 

How do you know if you have lymphedema and when does it start?  Lymphedema can start as swelling to all or part of the arm.  The swelling tends to be firm, and often uncomfortable.  While there may be some swelling of the arm immediately after surgery, it should resolve or start resolving in a few days or 1-2 weeks.  Swelling that persists may be lymphedema.  Lymphedema can occur at any time, even 20 years after cancer and surgery.  Women and men can get lymphedema in arms or legs, from injury, insect bite, and sometimes for unknown causes.  Breast cancer surgery is an “injury” that can make you more vulnerable to lymphedema than someone who has not had surgery.  Also the greater the number of lymph nodes removed, the greater the vulnerability. 

Anyone who may have lymphedema should be evaluated by a therapist who specializes in lymphedema care.  I can tell you if it were me, or a relative of mine, I would be insistent on seeing someone with extensive experience through a substantial percentage of their caseload in lymphedema management.  This can be an Occupational Therapist or Physical Therapist, but is more often a PT.  In my area, San Antonio, there are only a few lymphedema therapists.  Many massage therapists have this experience, but are not covered in most healthcare plans. 

SUMMARY

This information is what I have learned and what I felt was the basics of what clients needed and wanted.  You will therefore not likely find this in any book, manual or presentation.  Most facilities and providers tend to refer their post-operative breast cancer patients to Physical Therapy for shoulder range of motion.  PTs do not tend to address scar management, particularly sensory re-education.  Hopefully your surgeon, oncologist &/or therapist will be open to this guidance to maximize your recovery. 

Total Mastectomy

Talk to Your Health Care Provider

 

This article is not intended to be a substitute for professional medical advice, diagnosis or treatment.  Consult your doctor.  Consider asking for an occupational therapy or physical therapy consult. 

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Comments 35 comments

Luciendasky profile image

Luciendasky 7 years ago from Florence, OR

This is amazing information... I have a close friend who has struggled on and off again with breast cancer and I think I am going to send her this link. Thank you for sharing your expertise.


Mario.Alberto profile image

Mario.Alberto 7 years ago from Whittier, California

I am sure plenty of people will appreciate this


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Lucien and Mario,

Thanks so much for the encouragement! People with breast cancer want to know what’s typical and what’s unusual, and what to expect. I hope I’ve provided some of that.

Lucien, best wishes to your friend.

Rose Mary


robertsloan2 profile image

robertsloan2 7 years ago from San Francisco, CA

This is interesting. The lymphedema information is particularly interesting and may be relevant to other surgery too and other types of injuries. I've had it at numerous points in my life, most often in my legs when I injure my bad hip or knee or ankle.

There was one point when I lived in New York in subsidized housing where I got dragged out to three appointments in one day over my objections that I couldn't handle that much activity in one day. I walked too far. I sat on hard chairs that did more harm than walking because my legs gave out.

I wound up on months of bed rest from that one and I remember looking down and getting disgusted because I was fat. My leg looked like I weighed about 400 pounds. Then I looked in a full length mirror and funny, the rest of my body didn't match that leg. My other leg didn't even match that leg. I had one fat-guy leg and one vaguely-fat leg and arms and chest of the skinny guy. It made no sense but I knew that was what the three-appointment day did to my leg.

I wound up with tendonitis and only a couple of years later finally managed to get it under control with a tendonitis bandage my daughter bought for me. It still flares up sometimes.

I know the lymphedema, when the swelling gets that bad, hurts like crazy and has its own level of pain. Occasionally my hands swell -- weird though, they are most likely to swell and hurt if I haven't typed my usual day of going online or writing things. If I take a day or two offline and don't type at all, don't even get in a couple of hours, they will ache like the blazes and swell up like crazy.

This is why I tend to think that my writing helps keep the arthritis down -- it's exercise in the hands in a level that's within my ability.


AEvans profile image

AEvans 7 years ago from SomeWhere Out There

Wow!! Precise information common from an OT this is like a breath of fresh air on a Sunday, great job , keep up the good work. :)


Christy8914 7 years ago

I agree with AEvans. If more people took the time to share just a portion of what they know to the rest of the world, it would be a much nicer, healthier, sane world. Keep doing what you are doing......


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Robert,

Good point about the relationship of lymphedema to a variety of surgeries or injuries. The big picture can be muddied due to multiple concurrent factors, such as swelling due to vascular and lymph issues. I'm guessing this was the case with your "fat" leg. I don't know of too many reports of lymphedema subsiding without therapy/lymphedema massage. But then these clients wouldn't be seeking care from someone like me if symptoms resolved on their own.

Regarding your comments about hand pain and swelling vs typing and activity. I've heard this from clients a number of times. Something about it doesn't 100% gel in my clinical mind, but I can't deny the relevance given the number of times clients have said this to me. Key is your comment "it's exercise...that's within my ability". It's important to being a therapist, and important to being a good self manager, finding "the just right challenge".


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

AEvans and Christy, Thanks for the encouragement and support!


Debby Bruck profile image

Debby Bruck 7 years ago

Rose Marie ~ great job on explaining the details of lymphedema and after-effects of surgery. When people are told at this time, so much is overwhelming that the information is not absorbed.

There needs to be a close care-giver who can help not only the physical symptoms but the emotional pain and shock.


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Thanks Debby. What nice comments. I refer to the stress you describe as "having the switchboard jammed", difficult to hear anything after that.


TrudyVan profile image

TrudyVan 7 years ago from South Africa

Hello there, Now a great fan of yours. Love the information in your hubs. Thank you for sharing such valuable information


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Thanks so much for your support Trudy.


TrudyVan profile image

TrudyVan 7 years ago from South Africa

Wow Thank you for sharing I am going to put a link to this hub the more awareness that is created about cancer and cancer treatments the better.


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Thanks for your support Trudy. I added a link to your Breast Cancer hub as well.


Doc Lambert 7 years ago

Excellent information. In my practice, vitamine E oil from capsules worked best on shin scars. To alleviate deeper scars, ultrasounds do wonders. My friend who is a dermatologist and cosmetic surgeon uses US on all major surgeries he does with spectacular reduction in scar production. Tissues seem to heal to their normal state much more often and much faster. This info is available to your doctor if he/she looks for it.


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas Author

Thanks for reading and commenting Doc. I use US and even phonophoresis with thick scars, such as Dupuytren's post-op. I don't know anyone who uses thermal or electric modalities with cancer patients.


pinkboxer profile image

pinkboxer 6 years ago from Louisiana

Excellent! My occupational therapist was invaluable to my recovery. I also will add this link to my Breast Cancer hubs. " Pink Boxers " everywhere thank you!


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

pinkboxer I'm so glad you had a good experience with OT. Was it a military OT? I have included one of your hubs in the link capsule above.


cindyvine profile image

cindyvine 6 years ago from Kyiv, Ukraine

I suffered from bad lymphadema after my tram flap operation and it took almost a year after the op for me to be able to use my arm properly. My hand might still swell 6 years after the op if I write a lot. I actually start getting cramps in my hand when I write a lot by hand, and have to keep stopping to flex my fingers. As I got a DVT in my left calf after a knee op the same year as my tram flap, the veins in my left arm are so scarred from all the blood drawing, that they can no longer draw blood from there, so they are forced to use the right arm where I had the lymphadema after the mastectomy. It's not bad for me that that's the arm they use is it?


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

cindy, it’s not great that they draw blood in your right arm, but as you say, they have no choice. I’d still make sure they do blood pressure in the left. Are you careful about insect and sun exposure? That rule is something you need to respect forever.

Some other things to discuss with your doctor or therapist:

You should still be wearing a compression sleeve and glove daily, given your history and continued swelling. Put them on when you get up, and wear them all day, most days. Custom garments would be best, because you probably need more than 20 mmHg pressure. If you don’t have them, the ready-to-wear sleeve and gauntlet by Jobst would be better than nothing, and affordable. Custom garments cost about $500. You could find Jobst at North Coast Medical (ncmedical dot com).

I would still do this exercise: arm straight up in the air, pump the hand (open/close) 15 to 20 times. I would do it daily, and several times a day when you are having notable swelling. This is one of the post-op exercises in the American Cancer Society booklet. I’m not sure if it is available online.

You could try contrast baths for the hand cramping and swelling. I have a hub on CBs, as an arthritis hub. You could also see my Icing hub, and try the Karo syrup cool pack when you have swelling.

If you have access to a swimming pool, spend some time in the pool, with your arm completely under water. The pressures of the water are kind of like the sleeve. The pressure helps keep the intracellular fluids in the cells.

I’d also watch my posture. Forward posturing at the shoulders and upper chest could be contributing to the hand swelling/symptoms. Try to line up your ear hole and your shoulder. You could reference my ergonomics hub.


cindyvine profile image

cindyvine 6 years ago from Kyiv, Ukraine

I'll have to look at doing those exercises, my posture is bad as I sit hunched over my laptop a lot. The problem is that I live in the wop wops of Tanzania. No decent medical care, no compression gloves, doctors to talk to. The local GP here just prescribes antibiotics for everything, and I mean, everything. No mammograms either and I should have them every six months as they found new calcifications developing in my healthy left breast, 18 months ago. So, no mammogram for 18 months! They do have the machine but no one who knows how to operate it. In Arusha 80km away, they have an operator but their machine is broken. But I'll try those arm exercises for sure.


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

cindy I’d definitely look into the Jobst Ready-to-Wear sleeve, and the Isotoner fingertips free glove. You could get them both for less than $100, but I’m not sure what shipping to Tanzania would be! (Do you have hubs on what brought you there?)

Given your limited options for medical care, I’d also look into things that help you achieve a more alkaline pH, which is less hospitable to cancer and other diseases. Stuff like cultured vegetables, kefir, Lifeline water, and coral calcium.

I can email you some links tomorrow if you’re interested in these things.


Money Glitch profile image

Money Glitch 6 years ago from Texas

RM, this is a great and informative hub on breast cancer management after surgery. It definitely reveals a lot of tips that some doctors may not think to inform breast cancer survivors. Thanks for taking time to share your experience and thanks for the link to my hub. :) Thumbs up!


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

MG, I'm all for natural prevention and cures.


urba profile image

urba 6 years ago from Vilnius, Lithuania

Imagine situation of estrogen dependent Breast cancer. Some natural healer possibly could recommend parcial and some other herbs, vegetables rich of genistein, but this acts himself like...estrogen too. Women spends a year like vegetarina but cancer becomes worse and worse. So, such situation is a CRIME too, when roumors, or philosophy, that old and natural is better than modern understanding and technologies, could be proposed without deep enough individual situation identification...(more in my hubs)


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

(I have not had breast cancer.) urba, I concede natural healers are just as fallible as Western Medicine physicians. Unfortunately not all providers are created equal. My naturopath knows more about biochemistry than most physicians. I'm very lucky to have such an experienced and knowledgeable provider.


toneyahuja profile image

toneyahuja 6 years ago from India

it is good on Breast cancer Management After surgery. Breast cancer statistics, breast cancer treatments, signs, symptoms http://cancercurestreatments.blogspot.com/


rmcrayne profile image

rmcrayne 6 years ago from San Antonio Texas Author

Thanks for the visit toneyhuja. Good luck with your blog.


taamirplus profile image

taamirplus 5 years ago from Makassar

Good hub about cancer, please vote my hub too http://hubpages.com/hub/breast-cancer-relieved

http://taamirplus.com


rmcrayne profile image

rmcrayne 5 years ago from San Antonio Texas Author

Thanks for the visit taamirplus. I see your hub is currently unpublished. FYI self promotion is discourage in hub comments. If you write quality articles, the traffic will eventually come, and from outside of HubPages community, which is what you ultimately want, whether you’re trying to make money, or just get your work read.


taamirplus profile image

taamirplus 5 years ago from Makassar

thanks for your advice rmcrayne


crystolite profile image

crystolite 5 years ago from Houston TX

Very informative and useful piece of advice you shared in well.


rmcrayne profile image

rmcrayne 5 years ago from San Antonio Texas Author

Thanks for visiting crystolite.


Earthy Mother profile image

Earthy Mother 4 years ago from South East England

"Clients often note numbness or dull sensation or “fat feeling” to the inside &/or back of the upper arm." I was trying to explain this feeling to my own nurse and she didn't understand - thanks for making me feel not like a freak! :o) xx


rmcrayne profile image

rmcrayne 4 years ago from San Antonio Texas Author

Earth Mother I'm so glad you let me know that this article was helpful. I find what most clients want to know is what is common, what is uncommon but still happens, vs what is not common at all after mastectomy.

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