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January 21, 2013 at 4:42 pm #20952PatWParticipant
When my brother was first diagnosed with melanoma 6 months ago, he was already Stage IV with metastases all over is body, including his brain. When we first met with his oncologist (a melanoma specialist) the doctor was pleased to inform us that, while there was as yet no cure for melanoma, due to recent advances in melanoma treatment, they were now able to “manage” the disease similar to the way doctors manage diabetes or chronic heart disease. I’m sure that most of you have heard that speech.
Well, that didn’t sound so bad. We all know diabetics who seem to be fine– they take their medications and watch their diet and you’d never know anything was wrong with them. Same with cardiac patients– they get their arteries reamed out or get a stent put in or even have multiple bypasses and the next thing you know, they’re back to playing golf every day. So if “managing” melanoma is like “managing” diabetes or cardiac disease, bring it on!
I now know that “managing” melanoma is nothing like managing diabetes or a heart condition. It’s constantly living in a state of anxiety and uncertainty– is this treatment working? Are my tumors still growing? What will the next scan show? Will these miserable side effects go away or will they just get worse with continued treatment? How long will I be able to keep working so I can continue my health insurance? It’s constantly running back and forth from doctor to doctor and from test to test. It’s constantly researching what could be the next treatment or the next clinical trial in case you are one of the >85% of patients who relapse after any given treatment. And, of course, diabetes and cardiac treatments don’t have serious, debilitating, and life-threatening side effects that must be constantly tolerated and treated.
Of course I appreciate that there are better melanoma treatments available now than were available even 2 or 3 years ago. And even better treatments are in development. But equating melanoma to diabetes or heart disease is fundamentally incorrect and gives patients and caregivers false expectations. If doctors were more open and forthcoming about what really to expect from each different melanoma treatment, patients and caregivers would be in a much better position to make informed choices. Doctors should stop saying that they can manage melanoma like they can manage diabetes or heart disease.January 21, 2013 at 11:33 pm #58722Catherine PooleKeymaster
You are absolutely correct! Thanks for your insightful comments! I hope your brother is doing well and continues on the path to better health.January 22, 2013 at 9:18 pm #58723LaurieParticipant Pat and Catherine, The new terminology of “managing” diseases (melanoma, other cancers or other serious diseases) is spreading. Pat, I am not sure where your brother is but I know in the eastern U.S. a number of medical professionals are going to this terminology. I am just not certain all doctors that are using this “managing” are explaining it or using it correctly, similar to your experience with your brother. Its all about educating both the medical professional and the patient / family. Something the profession doesn’t always do very well.
A friend of my sister is dealing with a reoccurrence cancer (breast – 5 years out) and her oncologist (and supporting cast) also use the term “managing” her cancer. However, they seem to be using it from her perspective. The patient participates in the overall ‘management’ of their treatment/well-being (chemo, radiation, side effects, alternative medicine, holistic options, meditation, decisions, options, etc) as opposed to the past when its been more – these are your medical options – make a decision and we don’t care about alternatives, etc. My sister’s friend feels she is more involved this time in her cancer fight, not afraid to speak her mind to the medical professionals and feels overall that she has more control over her treatment and body.
Pat, I wish your brother all the best and I will pray for him, for you and the rest of your family during this battle with melanoma.
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