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).

Survivability

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)"

Being Prepared

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.

In Summary

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 got the results for the pathology of my melanoma today. My surgeon writes

Great news for you! Margins are clear and all the nodes are negative. Your staging remains a Stage IIA. You do not need more surgery. I will check with our medical oncologist regarding the need for immunotherapy

He has setup a referral to oncology so I'll meet with them next.

So, to break this down :

I don't need further ear surgery because the surgeons got all of the melanoma on the first attempt ("margins are clear"). I may have reconstruction done (a month out from now) to recreate some ear lobe with medical magic. This should go well as I retained a good amount of my ear, providing a good foundation to build from.

I won't need any further lymph nodes removed because all four sentinel lymph nodes that they took did not contain any cancer. Sometimes when they find cancer in the nodes, they may go back and take more nodes.

The staging of the cancer remains the same from when the first biopsy was done. This means that the assessment from the first biopsy (of just the melanoma tumor on the ear lobe) which was based on the type of tumor (T3a), depth of the tumor (2.5mm), the absence of ulceration, the increased mitotic rate,  and other attributes remains the same. The internet has lots of assertions about survivability and most of it looks good based on this, but I'm going to hold until I talk to an oncologist to understand specifically what this means for me in regards to statistical survivability, what treatments come next, and what to expect in the future.

I'm cautiously optimistic, I know this pathology isn't bad news (which I'm very happy about), but I don't yet know to what degree it's good news. I'm looking forward to meeting with an oncologist to find out more.

It's been a couple weeks since my surgery but the pathology results haven't come back yet. I've finished up applying vaseline to the healed incisions and am moving onto scar cream now.

What's next

In talking with my surgeon, despite not having pathology data back, I get the sense (just from how he talks about it) that the most likely result is that they will find melanoma in the lymph nodes and that I will go on to do immunotherapy. I think his expectation is driven by the initial depth of the tumor in the ear lobe. He's talked about what will happen next, which is that the pathology will come back and I'll get setup with an oncologist.

Post Surgery

I'll mention some details about surgey below so if that is icky, feel free to stop here.

I've healed up from surgery very well. I learned that during my surgery my surgeon found that when removing the tumor from my ear lobe he found clean dissections (no visible tumor infiltration) earlier than he was expecting and as a result didn't need to take as much of the ear lobe as originally planned. Once the pathology on the ear lobe comes back, either it will support what he saw during surgery and no more ear will need to be removed, or it will show that at a microscopic level the tumor did extend beyond where it could be seen visually in which case they'll need to do a second surgery to remove a bit more.

Another interesting thing about the ear surgery, which I didn't realize initially, is that only the front face of the ear lobe needed to be removed. As a result, the back of the ear lobe was folded forward and sutured to my ear. The result is that the front of what remains of my ear lobe is actually the back folded over. You can see this as the scar from one or two of my old ear piercings are visible on the front now.

I also confirmed that in regards to the lymph node removal, it was all done through the single neck incision (4 inches, oriented horizontally, pretty low on my neck). It was from this sincle incision that the surgeon removed 3 nodes pretty far above the incision (maybe 4 inches higher, as well as a single one down near the incision). I was pretty amazed that this was possible (traversing 4ish inches under the skin to remove something).

My surgeon confirmed that nothing about the lymph node removal was unexpected. The four nodes that he removed looked fine visually and nothing looked wrong in my neck while he was working.

My sensation on the surface of my skin on my neck and ear has changed  quite a bit since before the surgery. Most of my neck above the neck incision, and up to my jaw line and slightly into my cheek area, as well as the lower portion of my ear is numb at the surface skin layer. This is similar to what's happened to me in the past when I've been in motorcycle accidents. In those cases I lost feeling at the outermost skin layer. The nerves recovered over the subsequent 1 to 3 years. The surgeon said that the nerves would recover from the surgery as well (not sure how long it will take, hopefully months to a year). I'm also intermittently (once every 3 hours or so) experiencing nerve noise in the form of momentary instantaneous bolts of pain. They're only just slightly irritating in that they are incredibly brief.

There's some tightness in my neck that I'll likely just get used to.

Over the past 2 weeks, healing up from surgery, my pain has been very minimal (2 out of 10 at the most). I took over the counter painkillers for the first week or so and then stopped as I didn't need them.

Mental health

I've met once with a therapist so far. Our conversation was fairly introductory. We talked about methodologies to control negative thoughts. I have some homework on that topic. She identified that I'm dealing with some minor depression (I hadn't thought that I was but when she asked some screening questions, I realized that I am). I'm hoping to do better in regards to controlling where my thoughts are going and regaining my ability to think long term. At the moment I find myself unable to do any long term thinking, I suspect because doing so requires integrating into my thinking scary things that may be true in the long term.

I've not felt up to participating in the weekly tabletop role playing games. I hope to get to a mental position where I can restart that.

Support

I've gotten so many thoughtful and kind communications from folks. I really appreciate it.

I'll post again when I have an update.