MRF Blog

A Day With the Doctors

May 14, 2012 | Categories: Research

I spent the day last week in a meeting with doctors and researchers who gathered to discuss ocular melanoma, or melanoma of the eye.  It was the first bi-annual scientific meeting of CURE OM, the MRF’s program focusing on this rare cancer.  Spending 11 hours discussing the science of this cancer was informative and, frankly, rather exhausting.  Several things struck me about this meeting:

  • Some three dozen people volunteered their time to travel from across the country and Europe so they could sit in a windowless hotel meeting room, eat cafeteria-type food, and discuss the best ways to advance the understanding of this cancer.  This reflects amazing commitment to helping patients live longer and better.
  • Finding ways to collaborate across research centers and disciplines is essential to accelerating progress.  We cannot afford the price of institutional and professional rivalry, and the commitment of these researchers to collaborate with each other was impressive .  
  • With rare cancers and cancers in which the field is changing quickly, the place where a patient receives their care and the professional who provides that care, can have a significant impact on how long and how well they live.  People fighting this disease must be ready to advocate for themselves and seek out second, third and fourth opinions, fearless of offending anyone.
  • Despite tremendous progress in understanding the biology of cancer, we still have too many unanswered questions.  Cancer cells are riddled with mutations that give them the ability to do something they should never be able to do—divide out of control, avoid being destroyed by the immune system, shut down the normal self-destruct mechanisms.  This makes these cancer cells remarkably difficult to kill.

Most of all, though, I was struck by the atmosphere of hope.  At the end of the meeting, we described several specific actions that CURE OM can coordinate that will advance the science, improve standards of care for patients, and facilitate collaboration.  For me, that was a very long day, very well spent.

Comments

- (5/30/2012 - 11:31am)

I agree completely with the sentence, "People fighting this disease must be ready to advocate for themselves and seek out second, third and fourth opinions, fearless of offending anyone."

With two separate doctors, I have experieced anger and animosity when I have inquired, very politely, their opinion on whether a specific symptom was permanent.  Their attitude was that if I was alive, I should be grateful and not waste their time asking about symptoms.  (My eye tumor was small and grew very slowly, with a consequent low risk of metastasis.) 

It has been a shock and disappointment that the doctors with whom I have to deal in this rare disease, have so little  empathy with their patients.

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macknigsley - (9/4/2013 - 2:41am)

I must say that would be a better experience spend a entire day with a doctor brings several health changes among us. We are getting quality information from the doctors in regarding how to maintain a good health and to prevent from disease. During our health falls we should go for a health expert (doctor) who is professionally trained to deal with such problems. So I was just estimating that spending a day with a doctor should brings several informative action in our minds towards dealing with health problems and also brings several informative things in regarding different kind of diseases.

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