By Jill Kuyava, MSPT
Millennium, Hudson, IA

Post mastectomy pain syndrome or PMPS is a chronic pain condition thought to be as a result of direct nerve trauma, usually of the intercostobrachial nerve or axillary nerve pathways, and neuromas. It can occur in 20-63% of people who undergo surgery and following chemo or radiation, depending on which resource you read. With more modern surgical techniques being done, occurrence is decreasing.

Symptoms can include dull, burning, aching, stinging, stabbing, itching persistent sensation in the anterior chest, medial- upper arm and armpit, increased by shoulder girdle movement. It is diagnosed after three months post mastectomy, lumpectomy, and after all other causes have been ruled out. The risk of developing PMPS increases with axillary node dissection, especially with a larger number of nodes removed.

Pain increases also with stress, infection, anxiety and depression. PMPS can cause difficulty sleeping, pain with movement which can cause a frozen shoulder, difficulty performing tasks at home and make it very hard to work. Other effects can be soft tissue fibrosis and scarring, decreased strength, limited range of motion, lymphatic efficiency and swelling, reduced bone density, nerve hypersensitivity which can make even light touch of clothing hard to tolerate.

It can affect mood, social life, and difficulty or inability returning to work. Treatment can include; biofeedback, hypnosis, desensitization, pain medicine (which is not usually that effective), Neurontin, and injections. Specific treatments by therapists will guide you through gentle massage, range of motion (ROM), low intensity strength and cardio exercises prescribed for the specific individual, as well keeping a watchful eye on potential issues such as lymphedema, axillary web syndrome, causalgia or CRPS, and frozen shoulder.

These programs can significantly decrease pain, brain fog, and chemotherapy related fatigue while increasing your strength, endurance, ROM, self-esteem and memory. Walking is often a huge part of these programs. If you obtain the recommended 150-180 minutes of ​moderate to high intensity exercise per week, recurrence also is significantly reduced. Research on exercise and rehabilitation during cancer treatments continues to show positive effects for cancer patients, particularly breast cancer. As a result, there has been an increase in the number of therapists specializing in this population. Oncology patients’ referral to a rehabilitation program should be that as a cardiac patient referred to cardiac rehabilitation, immediate.

If you, as a patient, experience any of the above-mentioned symptoms of PMPS, it is encouraged to be proactive and speak with your oncologist or nurses about rehabilitation options and starting an exercise program. 

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 by Cathy Wilson-Sands

I had my first scare of potentially having breast cancer in my late 20's. A biopsy revealed I had dense and fibrocystic breasts. I continued to have concerning calcifications requiring biopsies every year or two. Just as my surgeon and I were ready to consider bilateral mastectomy to reduce my cancer risk, I had my sixth biopsy and was actually diagnosed with cancer. I was of course upset and concerned, but I had anticipated hearing the news five times before so I wasn't shocked.

Probably the most difficult thing was to explain my diagnosis to my sons. They had misperceptions about what a cancer diagnosis meant. And being elementary aged, it was a bit embarrassing for them to talk about breast cancer with their friends and teachers. My nurse navigator gave me a book for children from the American Cancer Society. It was helpful for them and they wanted to take the book to school to share with their class. It helped break the ice for them and helped them to deal with their concerns.

I am blessed to have a supportive family who along with my friends, church family, and work associates were there to help me along the way. I was amazed by how many women reached out to me with cards and calls of support and to share their story of survivorship with me. I quickly realized I had many, many sister survivors that I could call upon for advice and support. Neighbors and friends stopped with food to lighten my load. After my surgery, when my husband had to return to work, my sister came to spend a week with me to care for me and my children. I kept telling her I didn’t need her to come, but I was so glad she did. It helped me to heal on the inside and outside.

I really ended up with the best possible scenario for a breast cancer diagnosis. Since I had such a history with lumps and biopsies, I had regular follow-up and was good about monitoring with self-breast exams. I felt a new lump one day and promptly followed up. I was diagnosed with stage 1 breast cancer and based on the size of the lump, no lymph node involvement, and my hormone receptor status I was a candidate for hormonal based therapy. Most women I knew with breast cancer had to undergo chemotherapy infusions, so at first I was concerned that a pill everyday would be effective. I was lucky to have a healthcare team that used the latest evidence-based practice and engaged me in decision-making by sharing statistics on survivorship and risk of reoccurrence. We worked together to determine my treatment plan. Since I had a bilateral mastectomy, I didn’t have to undergo radiation. A year after my diagnosis, I did have a hysterectomy and my ovaries removed based on my family history with breast and ovarian cancer. I celebrate my “D” day (diagnosis day) every year and I am blessed to call myself a survivor for 11-years now.

My experience with cancer has shaped me as a person and in my career as a nurse. From my friends and family I have learned that it is OK to accept offers of help. I have learned from other survivors the power of a positive attitude and a sense of hope in a cancer journey. My journey has influenced my decision to pursue an opportunity to practice in oncology as I wanted to be able to impact physiologic, emotional, and spiritual healing of those dealing with a cancer diagnosis.

​I wish I had known about the Beyond Pink TEAM at the time of my diagnosis. In my current role as the Director of Cancer Services at Unity Point Health Community Cancer Center, I have seen the results of the support offered by the Beyond Pink TEAM. It is truly making a positive difference in the lives of so many.