Wednesday, March 4, 2015

Long term melanoma survivors....MARCH FORTH!!!!!

It is strangely disconcerting to consider that you may LIVE after being flat out told you weren't going to...or at least no longer than a few months!  I was informed of that very thing several times.  B and I were just remembering what the oncology radiologist who provided SRS to my brain met said at my last appointment with him...  He would - "see [me] back in a few months and 'we' would do whole brain radiation then!"  On leaving, I told B that unbeknownst to that fat little turd, it REALLY was my discharge appointment.  I would NOT be back to see HIM!!!!  He was a jerk who clearly had no knowledge about how he SHOULD be treating patients ethically nor any comprehension of appropriate radiation care for melanoma!  You most certainly can, and should, use SRS multiple times if necessary before jumping to whole brain radiation in melanoma!!!  But, I digress...I hold no animosity to other docs who gave me the same limited life expectancy.  They were telling me the data that was the REALITY of the time!  There was no ipi, anti-PD1, BRAFi!!!  Options were few and far between and 6 months or so was EXACTLY the planet time most folks like me had to look forward to....then. When you add to that rather scaring experience the fact that melanoma doesn't play like other can be hard for patients who are doing well, to go back to "normal" indeed!

Depression, Anxiety and Quality of Life in Long-Term Survivors of Malignant Melanoma:  A Register-Based Cohort Study. Beutel, Fishchbeck, Binder, et al.  PLoS One.  2015, January.

Via a state cancer registry in Germany a cohort of survivors of malignant melanoma were contacted.  Of 1302 contactable patients, 689 completed a questionnaire that addressed anxiety, depression, and quality of life.  Results were statistically analyzed and compared to surveys from the general adult population.  

At an average of 8.4 years (5.7-12.2) after diagnosis distress was higher in women than in men.  There was a decline of functioning and increase of symptoms across the age range of both genders.  Compared to the general population there was slightly increased depression in the female melanoma survivors, but no impaired quality of life.  "Yet, survivors evidenced functional decline and more physical symptoms. Distress and reduced quality of life were consistently predicted by lack of social support, fear of recurrence, pessimism and self-blame."  

"Overall, long-term survivors have adjusted well achieving a global quality of life comparable to the general population.  Yet, compromised functional dimensions, physical symptoms and distress indicate the need for integrating psycho-oncological screening into oncological follow-up..."

Not sure what to make of all that.  Women are wimpier than men?  Maybe....or perhaps they are more willing to admit their fears on paper?  Are cancer patients routinely offered psychological support?  I have never been.  And if I had, I doubt it would have been covered by my insurance.  It was certainly not offered as part of my clinical trial.

Sometimes I do think folks who have been through what I have also shared are incredibly focused on this pain or that sensation.  "Could it be melanoma again?"  "My treatments have made me forgetful!"  "Ever since I had ____________ I just can't work!"  Then again, I have known the healthiest of folks to be absolutely certain they have this dread disease or the other because they had a headache, a simple procedure, or a hang nail.  I wonder, "Do I do this?  Do I over analyze each sensation or event?  OR...Do I refuse to address the things I should?"

It is hard to know what is in the heart of a man...or sometimes even your own.  I figure we all must do the best we can.  I don't think I ignore or am unduly focused on my personal state.  But, I may not be the best judge.  Finding balance is not easy for anyone.  I hope that I simply embrace all the moments I can, today and always!!!  So....MARCH FORTH....on this, my favorite day!!!  Love, c


  1. I thought of you yesterday morning! :)

  2. Guess what I told my students?

  3. Yay for long term survivors! I too, am a Stage 4 survivor, almost 5 years in remission! You are so right though, it is a delicate balance in the world of survivorship and one that I, at times, struggle with. I think the toughest part (other than worrying about it coming back), is the "survivor's guilt" that I have when I lose comrades and friends to this disease. You can't help but think, "When is it my turn?" or "Why them, and not me?" Like I said, it's a hard balance!

  4. Showed them, didn't you!!!!! You ROCK!!! I am so proud of you and your fierceness!!