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.

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

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!

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?

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 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.

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. 

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. 

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.