Breast Cancer Self-Management Strategies After Mastectomy or Lumpectomy Surgery
How I Got to Be an Expert
In 2002, I was a pediatric occupational therapist and knew virtually nothing at all about caring for clients after surgery for breast cancer. Four years and two military moves later, I was the de facto expert in my clinic for post-operative management after mastectomy and lumpectomy. Even physical therapy consults were converted to occupational therapy consults, so that post-operative breast cancer clients could be scheduled to me.
How did this happen? Well, that next Air Force assignment in June 2002 placed me in a clinic where I was the only occupational therapist. Whatever client and diagnosis came in, as an OT consult, it was all on me as the only evaluating therapist. In a stroke of luck, my senior therapy assistant had cross-trained into OT after being a nursing technician. In a previous assignment as a nursing tech, she was on a wound care team. Her skills proved to be invaluable to my journey and to the livelihood of many clients after surgery.
I also had easy access to consult physical therapists if I needed to, and the general and plastic surgeons were very prompt in returning my calls. Perhaps most importantly, I listened to clients’ problems and concerns. Over time, I grouped and sorted their information and problem areas and came up with a few areas that seem universally relevant for clients after mastectomy or lumpectomy. 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.
Information presented here is for educational purposes. You may find it compelling enough to discuss with your medical team. The information is not, however, intended to be a substitute for professional medical advice, diagnosis, or treatment by medical professionals who have evaluated you. Hopefully, your surgeon, oncologist and/or therapist will be open to considering this guide to maximize your recovery.
My List for Education and Therapy
- Resuming Activity
- Regaining 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 an 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!
Don't do too much too soon.
Shoulder Range of Motion (ROM)
Most clients, regardless of whether they had lumpectomy, mastectomy, or lymph node excision, are too sore 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 exercises.
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. I have thoroughly covered this topic in another article, Range-of-Motion Exercises After Mastectomy or Lumpectomy. In that article, you will find exercise instructions, photos, and videos.
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 45-60 minutes, 2 times a day, versus 10-15 minutes 6 times a day. Which would more likely result in an increase in soreness or swelling?
If you need more information on the 0-10 pain scale, you can refer to the Intensity of Pain section of my article How to Talk to Your Doctor About Pain.
Our clinic usually dispensed an over the door pulley, such as this one, to clients. Pulley exercises are a valuable tool for regaining shoulder range of motion.
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.
- Improve the appearance of scars.
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 dispensed 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 similarly to a carpal tunnel release scar: the 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 (thick) and/or have the knobby areas. These require a significant amount of expensive silicone products, which may exceed clinic resources. Patients then just use lotions and oils.
Cocoa butter has been a favorite of therapists for decades for treatment of scars. I always mention cocoa butter as an option for scar management.
This product is good for thick scars, which is often the case with mastectomy scars, and abdominal scars from reconstruction flap surgery. The product will usually last several days before a new piece is necessary.
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 and/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.
Zoning Area of Hypersensitivity
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 your favorite music, fragrances, or a 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’, the zone of greatest discomfort, each session. Our goal is to increase the range of textures and pressures tolerated and/or decrease the total surface area of touch hypersensitivity over time.
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:
- 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.
The lymphatic system is crucial to immune function and fighting infections. Lymph nodes filter the lymphatic fluid, to identify and filter harmful materials, such as bacteria and cancer cells.
A compression sleeve is recommended for lymphedema prevention. Even with a single sentinel node or minimal lymph 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 (of harmful materials) 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.
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.
Talk to Your Doctor About Compression Sleeves and Gloves
This is a great sleeve for lymphedema prevention. It it reasonably priced, and easy to measure for size. I have prescribed the Jobst sleeve for scores of clients.
Gloves are often not necessary for lymphedema prevention. When arm swelling is present however, gloves are needed to prevent swelling from pooling in the hand.
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 and/or therapist will be open to this guide to maximize your recovery.
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.
- North Coast Medical :: Jobst® Ready-To-Wear Gauntlet
Jobst gauntlet, like a mitten with the fingers cut off.
- North Coast Medical :: Jobst® Ready-To-Wear Armsleeve
My favorite off the shelve compression sleeve.
- Susan G. Komen for the Cure
- American Cancer Society :: Information and Resources for Cancer: Breast, Colon, Prostate, Lung and O
The American Cancer Society is dedicated to eliminating cancer by preventing cancer, saving lives, and diminishing suffering through research, education, advocacy, and service. Many of my clients said the free mastectomy bra from the ACS.
Questions & Answers
© 2009 rmcrayne