Coming up on 15 years since last surgery/treatment

First off congrats on 15 years Steve!

Good question on the scans.  I'll be curious what others say.  My own thoughts are I think your scan schedule you layed out might be excessive.  Reason I say that is in the age of immunotherapy the data shows if a patient makes it to the 2 or 3 year mark their likelihood or recurrence goes down dramatically.  I wouldn't think most doctors would recommend scanning annually past five years.  I'm coming up on about 2 years stability and have just moved to 6 month scans.  My intention was to do another 6 month scan which would bring me to 3 years.  Then one or two annual scans and hopefully be done.  I've been getting 3 month scans for about 5 years.  I'm starting to glow in the dark!

Brian

First of all, congrats on your status, Steve!!!!  The question you pose regarding radiological follow-up is a good one.  It is very difficult to find a "protocol" or "standard of care" for same that is not dated – meaning post 2011 when current immunotherapies and targeted treatments were FDA approved for melanoma.  Those advances have made a world of difference in what is appropriate for our care.

Here is one of the most recent and comprehensive standards I can find (not that that means it is the end all, be all, nor the only one out there):  

https://wiki.cancer.org.au/australia/Clinical_question:What_is_the_ideal_setting,_duration_and_frequency_of_follow-up_for_melanoma_patients%3F  

It states in regard to Stage IV patients:  "There is a lack of valid prospective studies of the efficacy of routine follow-up. No study has demonstrated an improvement in survival due to intense routine surveillance.

There may be some advantage in terms of patient reassurance and the detection of new melanomas"

Having been diagnosed with Stage 3b melanoma in 2003, Stage IV with brain and lung mets in 2010 (rendered NED in the same year through SRS, surgery and a 2 1/2 year Opdivo trial), I too, remain NED for melanoma.  In other words, I have been scanned interminably for melanoma for the past 16 years, despite being NED for the past 8.  

For what it is worth, internationally renowned melanoma Big Dog and researcher Dr. Jeff Weber (who ran the trial I participated in and has managed my care since 2010) advised me that my (now) annual CT scans of neck, chest, abdomen and pelvis with an MRI of the brain that I had in August 2018 "should be your last" routine scans.

That said, my personal status has been complicated by a new cancer.  I will be seeing my local onc on the 7th to discuss this very issue of recommended follow-up: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/01/happy-new-year-and-capox-as-adjuvant.html

What do I see in the future for melanoma???  While these are not entirely patient ready and those that really are, are not fully embraced by oncologists in their melanoma management, I think biomarkers – easily accessed with a simple blood draw – will be the way that melanoma is (at least in part) diagnosed, treatment is chosen, and response as well as progression are determined.  Here is a report with many links within: 

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/important-stuff-floating-in-our-blood.html

That said, I am a firm believer in HOPE!!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/part-2-ratties-and-hope.html  

We have come a long way.  We have a long way to go.  But, I am certain we will get there.  May you have a lovely day and a zillion more NED years to come.  Yours, celeste

Hey Steve,

This is such an awesome question and is really at the heart of evidence-based medicine and benefit/risk ratio.  This is what all the researchers and policy makers consider when setting guidelines.  I can tell you that my husband was put on this protocol about 5 years ago at MD Anderson so still a current accepted practice.  Every 3 months (first 2 years) every six months, etc.   If you asked my husband, he believes it is a money grab 🙂 , I had to inform him that in his case,  it would probably be a case for malpractice if they DIDN'T offer this protocol.  He is very high risk and unknown if stage 4.  And god only knows what the variability of the insurance companies covering this stuff in any consistent way which is a shame. And Brian is right that your curve (chance of recurrence) slopes downward quite significantly at year 2.  However, people with known melanoma probably remain at higher risk obviously.  I'm not really sure if it ever resets to the normal population, but probably over time does approach.  The question is does the risk of not catching a recurrence/spread earlier outweigh the risk of getting scans (radiated). And does imaging provide a good way of catching recurrence (it does).  That is a huge question with lots of variables (sensitivity/specificity of imaging, etc).  I'm guessing the large body of data suggests it is the best way to date. 

What is so INCREDIBLY exciting is the shift in evidence-based medicine that Celeste was talking about.  It used to be that there was a large body of evidence/outcome data that suggested a treatment worked at a certain percentage (i.e. chemotherapy helped 25%), so you were put on that treatment if you had the disease.  but we never knew WHY or WHO would be helped. Who would be in that 25%.  And why did we just put people through hell in the 75% that didn't respond in meaningful way, etc.   Now, with precision medicine (where they can look at markers in the blood, your entire genetic profile,mutations in your tumors, environmental factors, other mutations, etc), they are getting closer to predicting more accurately why and who might recur and who might not and why/who will respond to different treatments.  I work in grant-funded environment and this is where a good portion of the funding is going along with preventative screening, etc.  This is the next big step in medicine for sure. It's like the discovery of penicillin big!

Here is decent article from Mayo clinic on radiation risk.  Obviously type of imaging (CT, etc) and amount/dose of radiation are important variables.  But from everything I've read, the risk of recurrence/spread and what that means for outcomes (mortality, morbidity) still far outweighs the risk of developing cancer from frequent scanning.  But there is some discussion about possibly reducing radiation dose without sacrificing quality of the images.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996147/

I just wanted to say thanks for bringing this up!  My husband's eyes glaze over when I talk about this stuff, so this group allows me to babble on this…..sorry for the babble.  I do think the biggest thing is advocating for yourself, that to date is probably one of the most important variables.  

Hoping you never deal with this again no matter what you decide. 

Best wishes,

Jackie