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When ‘Nerve Pain’ Is Really
Treatable Truncal Lymphedema

The Dangers of Some Medical Professionals’
Attitude Toward Truncal Lymphedema

Recently I ran into a former patient when she accepted an office manager’s position next door to the clinic in which I work. I had not seen her for nine months since successfully treating her chronic LBP (Lower Back Pain). We visited and caught up, and then she told me that she had been diagnosed with breast cancer since I had seen her. She had finished radiation approximately four months prior to our conversation, but was still experiencing breast pain. Given that this is my special area of expertise, I wanted to make sure that she was educated about the possibility of lymphedema. She assured me that she had seen her doctor and nurse practitioner at our local, highly-esteemed breast care center and that she had had no signs of lymphedema on two occasions of examination. She had discussed her pain problems and post-operative concerns with her health care providers, and they had told her that the pain she was experiencing was nerve pain; hopefully, they said, it would go away with time.

This woman had undergone two separate surgical procedures as well as a course of radiation. The radiation had left her with some moderate skin discoloration and skin fibrosis six months later.

When treating this woman in the past, I had observed that she is a stoic single mother with four children, who works full time and owns and cares for her home. She is bright and articulate, and rarely complains.

I proceeded to ask her more questions. How was she feeling? Did she have any pain or fullness in her breast or chest wall? Was there any pain or fullness in her axilla? She reported that this “nerve pain” was quite disruptive in her life. Her kids had learned not to give her a spontaneous hug, her boyfriend had to be careful when he touched her, and she rated her pain at a 7 - 10 much of the time. It vacillated during the day depending on how much she used her arm, and was uncomfortable at night, She feared that next summer she would have to give up her true love, gardening, because if she could not tolerate cleaning her house and computer work (which significantly increase her pain), how was she going to garden? She said she knew she had to just work through the pain, because this was what she was left with after treatment, and she had to move on with her life. She would just deal with it.

Upon explaining the symptoms of breast lymphedema, she said that no one had told her that this was a possibility, or even that the condition existed. She reluctantly agreed to have me look at her chest wall, but clearly did not believe that I might be able to offer any help.

Upon evaluation I noted that on the right side she had deeper demarcations from her bra under her breast and laterally under her axilla than she did on her left. Palpation revealed thickening of the skin over the breast, across the posterior shoulder and latissimus area, and in the axilla and infra-axillary region. Palpation of many of these areas reproduced her pain. I questioned her about her bra, which was clearly too big and was providing no support at all. She was told at radiation that she should not wear any under-wire bras and that her bras they should be soft and made of cotton. As a result, she had spent a great deal of time trying to find a suitable bra and was wearing one that was at least one size too large in band and cup size. She reported marked tightness and pain deep in her breast that pulled significantly when she moved her arm in certain positions. She also reported pain that radiated down her upper arm. She was not missing AROM of her upper extremity, but the protective protracted position in which she had kept her right shoulder was clearly inhibiting scapular stability. Her rotator cuff and scapular stabilizing muscles were clearly weak on her right and dominant arm. Her pectoralis muscle was tight and hypertonic, and might well have been contributing to her pain. Her neck was frequently sore and tight.

She was due to have a mammogram the next week and was visibly anxious about the prospect of this very sore breast being “smashed”. I told her that I felt that she did have a component of breast and truncal lymphedema, and that there was a possibility that MLD [Manual Lymphatic Drainage] would help reduce her pain. She was very skeptical, but concerned enough about her impending mammogram that she was willing to try it.

After her first treatment she was surprised to find that her arm pain and her breast pain were reduced immediately. That first night after treatment she was up all night going to the bathroom (a good sign). The following morning she felt better than usual, but she was still cautious about the results. I treated her a second time, and she definitely noted a difference. After a few hours of work at the computer that day, the pain in her chest and arm increased again; treatment decreased it again. I suggested she try wearing one of our sample compression bras (from Bellisse) the rest of that day and through the night. She was skeptical, because she did not understand how this might help. She agreed, however, to try it.

The next day (Day #3), she reported that she awoke with significantly less pain and that her work had not caused the same onset of pain that she had noticed on most days. She cautiously agreed that it might be because of the treatment and compression bra.

We treated her with the same MLD and compression bra protocol for five treatments. She went to her checkup with the nurse practitioner at the breast care center with much less pain, and to have her mammogram. The mammogram was much easier than she had anticipated, as she was reporting her pain to be at least 70 % better.

When she met with the nurse practitioner and told her about her experience with physical therapy, she was met with a condescending attitude and told that she did not have lymphedema. The nurse measured her arm and assured her she did not have lymphedema. The LNP further told the patient she could not have lymphedema in her breast, as she (the LNP) could not see it. This health care provider went on to tell the patient that she could continue with the physical therapy MLD if “it made her feel better”, though she could not see why she needed the compression bra; if she wanted to try something, she should try Kinesiotape.

As the treating therapist, I am rather insulted by the response of this medical professional. Not only did she not listen to the patient, and fail to recognize the symptoms of the documented and very real post-operative problem that the patient was describing, but she also behaved in a condescending and unprofessional manner by trying to talk the patient out of what she was feeling and physically experiencing. She undermined the PT diagnosis and suggested that the treatment this patient was receiving was not really medically necessary, implying that I was treating her unnecessarily and, furthermore, that had I recommended an expensive piece of medical equipment unnecessarily.

As a PT, I also wonder how many other patients are not receiving appropriate care due to this medical professional’s attitude.

The patient returned from her oncology visit very unhappy and feeling she was not receiving optimal care from the breast care center. She is strongly considering changing facilities and does not plan to ever see that particular nurse again.

Changes that this patient has experienced since initiating an MLD protocol for her problem include the ability to have greater physical contact with people, especially more spontaneous hugs without pain; being able to go over a bump in her car without having to hold her breast; improved sleep quality; being able to run around with her kids, hand wash the floors of her house, and do her job with less pain (computer and phone work); and a great improvement in her general future outlook. She reports that her pain is 75% better, and the compression bra maintains these results. When she does not use the bra the pain and swelling return within about three hours.

What can we learn from this case? It appears that too many cancer care professionals still do not understand or recognize the signs and symptoms of breast or truncal lymphedema. The real question is why.

Is it because truncal lymphedema presents so differently than limb lymphedema? Does lymphedema, by definition, have to be linked to limbs in professionals’ minds? Do we need to rename it something else? Maybe “Post Breast Cancer Skin Congestion” would get this painful condition the attention it deserves.

Have these professionals forgotten that lymphedema is a condition of the skin? Does not skin cover other parts of the body other than the extremities, and does skin not have the opportunity to swell anywhere?

Do these cancer professionals not know that lymphedema comes about because of distended and congested lymphatic vessels that literally stretch out and cannot retract, thereby creating a reservoir waiting to fill? That when these lymphatic vessels are all stretched out, lymphedema occurs? Do these professionals not understand the anatomy of our lymphatic system, and do they not know that when visible swelling persists after a reasonable time in tissues, it indicates the body’s reduction in lymph transport capacity? That this reduction in capacity can be either local and systemic, but that even if it is only local, it still can be symptomatic? That local congestion often leads to chronic lymphedema?

Do these cancer professionals not realize that lymphedema is a chronic condition that, once present, requires daily management? Do they not know that the risks of lymphedema include serious infection?

Most importantly, are these cancer professionals not concerned with the poor quality of life that women with truncal lymphedema have to live with? When they meet women with post breast cancer lymphedema, are some medical professionals still secretly thinking, “Honey, be thankful you are alive?”

With a treatment protocol that presents zero risk to the patient and can make a world of difference in often less than two weeks of treatment, why are so many doctors so reluctant to recognize and refer for this condition and treatment? MLD is a treatment that we can teach patients to continue independently, so they are not dependent on therapy professionals.

At our clinic we don’t know the answers to these questions. Perhaps this patient’s case history will open a few minds.

Bellisse responds:

No, we don’t know the answers to these questions either. But we do know that this is not the first time that a women’s health problem has been dismissed and repeatedly mis-diagnosed. Women’s unique health issues have a long, disgraceful history of being ignored. Think breast cancer, itself, forty years ago. Heart disease only a decade ago (and some would say still). Post-partum depression today. And Truncal Lymphedema. Right now.

Telling stories like this one is the best way to prevent ignorance and medical arrogance from leading to negligence and unnecessary suffering. If you have a story to share, please send it to us so that we can put it on our website.

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