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Beware of hidden agendas in cancer support groups

Miranda Fielding, MD
Physician
April 3, 2013
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My husband likes to say, “No good deed goes unpunished.”

I don’t always agree, but sometimes you just can’t argue that concept.  One of my favorite patients, a forty nine year old woman who I treated for head and neck cancer a year ago is a good case in point. Head and neck cancer is on the rise, and is linked, like cervical cancer, to infection with human papilloma virus which is sexually transmitted.  Patients who are treated for this type of cancer have a very rough time.

Typically, curative treatment these days involves combining chemotherapy and radiation, reserving surgery for salvage in the case of an incomplete response or recurrence.  Patients have severe mucositis, inflammation of the oral cavity and the throat, and oftentimes require a feeding tube for nutrition. They lose their sense of taste, they are hoarse, their mouths are intolerably dry, and they are fatigued and miserable.  The good news, however, is that the majority of these patients are cured, even with advanced stage disease.  Many go on to be advocates for others just starting on their journeys.

It was with this in mind that my patient’s ear nose and throat doctor asked if she would mind speaking to a man of similar age and circumstance who had been recently diagnosed.  Of course she agreed.  She had been through the war, won the battle and wanted to help if she could.  She called him and they spoke at length about treatment side effects.  But something seemed a little “off.” Soon he was calling and texting her daily.  He wanted to meet her.  She politely declined, but she invited him to attend an event at our cancer center celebrating survivorship, and the role of complementary therapies.  He wanted more.  Soon his urgent text messages dominated her cell phone, culminating in the question, “So how did you get your HPV infection?  You must really like oral sex!”   She got a restraining order.

I saw another patient a week ago with breast cancer for an initial consultation.  She was very nervous, unduly so considering that her cancer was detected very early and she had completed her lumpectomy and sentinel node dissection.  The tumor was tiny, the nodes were negative and she was not going to need chemotherapy.  When I could not dispel her anxiety, she finally confessed that another breast cancer patient of mine had sent her a picture on her cell phone of her breast at the end of treatment, at the peak of her skin reaction.  This other patient had undergone chemotherapy first, which sensitizes the skin to radiation; she was large breasted which also increases the skin reaction; and she had refused to follow advice regarding her skin reaction.  She had an area of moist desquamation—peeling skin—in the inframammary fold.  She is now completely healed, with no permanent skin changes, but in the interim she deemed it important to frighten a new patient nearly to the point of refusing therapy.

Many years ago another head and neck cancer patient said to me, “When I found out I had cancer, I joined a club that I never wanted to be a member of.”  Support groups can be wonderful—many of my patients tell me they have met their best friends at group support meetings.  But always beware of people with hidden agendas.  When it comes to cancer support, there are far too many of these.

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries. 

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