I met with my oncologist this morning and got some really good news. Based on the staging of the cancer (Stage 2a) which was based on the pathology that I got on September 16th that came from the surgery on August 27th I don't need to begin any therapy (e.g. chemo or immunotherapy). As someone who has had melanoma, I'm now at a higher likelihood to get melanoma again in the future and as a result I'll need to get checked by a dermatologist every 6 months for the rest of my life.
This means that of the various potential outcomes that I'd talked about at the end of August this appears to be the best case scenario :
No cancer is found in the lymph nodes. I lose an earlobe and have it reconstructed through the magic of science. I stay vigilant for a few years to see if I detect any change in the skin or lymph nodes around my ear. This ends up being a bullet dodged and hopefully an inspiration in regards to the fleetingness of life.
The only tweaks are that the vigilance will be for a lot longer and for my entire skin, not just head and neck.
What Does The Future Hold
As I said I'll need to get a dermatological checkup every 6 months from now on. This seems fine to me.
The National Comprehensive Cancer Network (NCCN) recommendation for stage 2a (page 39) is to get checked by a dermatologist every 6-12 months for 5 years then annually. Kaiser goes with every 6 months from now on, which seems prudent. The reason for this is that as someone who's had melanoma, I'm statistically at higher risk of getting another one, and they want to notice it quickly when it happens.
I'll also need to be cognizant of any potential changes in lymph nodes. My oncologist characterized this as any nodes (for example in armpits) that are bulging, hard or imobile (though not painful). He said it's unlikely but worth keeping an eye out for.
My oncologist talked about new (within the last week) findings that relate to the benefits of immunotherapy to stage 2b and 2c melanoma patients but that doesn't apply to me as a stage 2a. Related to the publication of these findings, Kaiser is spinning down a similar clinical trial currently. So there are no clinical trials that my oncologist suggested I join.
I did get blood work done which all looked good and based on the staging, I don't need to have any further imaging done (CT/PET scans).
Statistics on survival rates for patients with melanoma are in flux right now due to recent discoveries in the area of immunotherapy. Those statistics as summarized by my oncologist show that people in my situation (having had a T3A melanoma) have a 5 and 10 year survivability of 95%. He added that those in that 5% would likely today have different survival rates given the success of immunotherapy (which he said are up around 60% to 80%).
In asking if statistically this (melanoma) is what I will end up dying from some day, he said no and that I have a higher risk of other causes of death than this, which is great.
Finally to the question of do I have cancer, my oncologist said they don't use those terms any more (not having cancer, remission, cured) and instead I'm just identified as "No Evidence of Disease (NED)"
My oncologist said that I should put in effort to get and remain healthy, exercise and reduce body weight. This is so that if I do need immunotherapy in the future, I'll be healthy enough to be eligible to try it. I currently don't exercise and have a BMI over 30.
Is It Hereditary
Based on my family history (no nuclear family members getting cancer under the age of 40) and on my experience (having less than 3 melanomas), Revelle isn't at an elevated risk of cancer.
More Pathology Detail
My oncologist shared that the pathology did find an additional melanoma in situ which I guess is the most surface layer of melanoma. I didn't fully understand but it sounded like something that had spread from the main tumor maybe?
I'll also get an ultrasound in a year or two of my thyroid gland which had some minor oddities, to see if it's changed at all.
Good news today. I suspect there won't be a need for further updates on the blog about my health so feel free to unsubscribe from updates if you wish.
I'm not sure how this all will settle out in my mind. I don't feel elated or anything (yet). I imagine it'll take more time to process. Hopefully I'll be able to take both the experience of this ill-defined risk to my life over the past 4 months and the upcoming greater attention to my own mortality, and grow from them, improving my health and living more cognizant of the inarguable finiteness of life.
“I have a higher risk of other causes of death than this, which is great.”
We have different definitions of “great”.
Also I am going to sell you on the idea of an anti inflammatory diet (which my doctor put me on to lose weight and be healthy). It is pretty great so far. And I have lost 15 pounds.
Hurray! We’re ‘elated’ for you.