Is my Doctor being truthful in what I can expect?

Posted By
phammond53
2/11/2018 8:24am
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Replies: 4

First diagnosed with Melanoma in 2015.  I had an ulcerated mole on my left outer thigh.   This was removec and a SNB was performed.  No nodal involvement.  In April 2017 a reoccurrence on my left thigh was diagnosed.   Upon further investigation it was determined that one node in my groin was affected.  Surgery removed the nodual on my left thigh and major groin dissection was performed (removed all nodes in my groin and abdomen).  I was placed on Interferon as a treatment protocol.   November 2017 I was diagnosed with Melanoma in my lungs and lymph nodes behind my lungs and another tumour on my left leg. (Stage 4).   I am now being treated with Keytruda and scans every three months.  The volume of cancer is low.

The first Doctor who diagnosed was very grim and stated that the “average” person with my condition goes 8 to 24 months before progressing.   (This was not my regular doctor)   Upon seeing my regular doctor she was far more hopeful and stated that they have many people doing well on Keytruda past the 4 year mark   She indicated that with low volume of cancer in the lungs I should respond well.   

I’m trying to make sense of these conflicting outlooks.   I want to plan and make decisions but find it hard     I’m off work, should I go back?  Try to do some bucket list items while I’m healthy?   How long before my health deteriorates?    Is my Doctor sugar coating my outlook?

Any advice, or even some perspective from this forum would be most welcome    Sorry for the long post  

 

 

 

Some doctors are pessimistic and I would go with the hopeful one.  Here is a video of melanoma stage IV patients telling their stories that are still doing well many years after their melanoma spread in their bodies: http://melanomainternational.org/events-webinar/patient-experience-video...

Since the doctors can't accurately predict response you will get a different answer depending on who to talk to.  I agree with annonymous, go with the positive one.  There is no reason to be grim and assume the worst at this point.  I don't think the doctor is sugar coating anything.  I took a break from long term planning for a while.  I'm back at it now.  I think the mental toll is very high.  Be kind to yourself.  You will get there.

Jennifer

Hi Phammond 53, where are you being treated and is the oncologist a melanoma specialist? Low volume is always a good thing, the data is showing that low volume, low LDH patients are doing really good on checkpoint inhibitors. I have two lung tumors as well, one is in the lymph nodes and has mostly disappeared and the second has reduced in size from 3.5cm down to around 1 cm and remained stable for just over 4 years now. Still on treatment, so that planning part might have to wait, melanoma kind of has it's own rules in that department. Best Wishes from a very snow covered Canada!!!Ed

Hi phammond,

Well....hmmm.  Good question(s). I was first diagnosed with melanoma in 2003. Surgery. Stage III.  No treatments then other than interferon.  Opted out of that.  Recurrence in 2007. Surgery.  Still no effective treatments available.  Brain and lung mets in 2010.  Nivo (now Opdivo) phase 1 trial from Dec 2010 to June 2013.  Still NED.  So...to answer your question.  Where you're going will forever be a question.  But, wasn't it always?  Maybe just one we didn't bother to ponder?  Here's a post, written this past January, where I looked back (and forward).  If you like to read.  And perhaps the link "Looking Forward" in the last paragraph, written in 2010, might interest you.  Anyhow, here it is:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/where-ive-been-where-im-going-fractals.html

Buy the pants.  Take the trip.  Live large.  What have you got to lose????  I wish you my best.  Celeste