From skin lesion to brain tumor

Hi, if you read my profile you will see that the same thing (roughly) happened to me. I was told to get semi-annual skin checks. I don't think my dermatologist was very thorough at all. The problem with CT scans is that they're expensive so insurance won't usually pay for them until there's metastasis. I think more should be done in the area of education. Both patients and dermatologists should learn more. I wasn't told after my WLE and SLNB came back negative what to look for or how to look for it. I don't even think that my dermatologist knew that much based on the cursory exams she gave me. Dermatologist know how to look for "suspicious" spots on the skin, but beyond that they don't seem to know much about melanoma. I'm sure there are exceptions, but based on my experience and what I read on forums like this, they're only exceptions. 

This isn't just a bash on dermatologists. I wasn't told or shown how to palpate my body for swollen lymph nodes or even to on the lookout for them. In retrospect, I should have educated myself but I didn't think I needed to. I thought I had dodged a bullet, but it had struck home. I just didn't know it yet. I wish now that my surgeon had sat me down then and told me how serious this was instead of trying to put my mind at ease. 

I'm not opposed to regular scanning, but with or without, education is essential.

My wife had a melanoma removed from her left leg in December 2016 in a WLE.   A SLNB done at the same time was clear, as was  PET scan.  She was stage 2, as the tumor was deep and ulcerated.   She was scheduled for 6 month CT scans of the body as follow up.

About a week before her first follow up scan, I had to take her to the ER due to severe dizziness and nausea.   A MRI performed at the ER found two brain mets, one was 10mm and one was 26mm.   Was the large one already there at the previous December?   Who knows, as they didn't do a MRI of her brain at that time, and neither was one scheduled as part of the routine follow-up.

She's been NED since December 2017 (on immuntherapy after craniotomy and gamma knife) but her most recent MRI has concerning elements and the doctors are still trying to figure out what to do next.
 

In summary, she progressed form an initial stage 2 diagnosis to stage 4 in about 6 months.

Same happened to me, stage 2b on my scalp, 5 surgeries and then stage 4 a year later with 1 met in my upper shoulder which I felt and 7 mets in my lungs. But have been NED for 18 months.

The same thing happened to me, although my case is a lot more prolonged. My primary Melanoma was diagnosed in 1994, I went about 15 years with nothing else coming up then had another melanoma on the skin. A few years after that I had a Melanoma in-situ, followed by another Melanoma on the skin a year later.

Then, in February of 2018, after 24 years of skin checks (typically 4 times a year) mostly with the top-rated melanoma dermatologist in town (I moved a few times during that period), I was diagnosed Stage 4 with a fist-sized brain tumor and two lung mets. I’ve thought long and hard about whether I could have or should have done anything more but the truth is I just don’t think so. For some people, as shitty as it is, it’s the luck of the draw.

During that long time, I met with melanoma oncologists (including appointments every 6-months for the first 10 years because I was 8 when I was first diagnosed), searched out the best dermatologists, covered myself  in sunscreen, ate healthy, and let doctors cut off way more of my skin than I liked but it wasn’t enough and I don’t think there is anything more that would have been enough. Regular CT scans come with their own risks and, in my case, wouldn’t have really lead to any other conclusions and would have only enhanced my stress and worry which I think is way worse for life and melanoma. 

Of course, I’m a huge advocate for seeing a respected dermatologist and, specifically, one that specializes in Melanoma (I usually hunt around and ask my GP for a recommendation) and watching your skin and following up but there is only so much that can be done.

I wish you all the best as you try to conquer this terrible disease and please, please, please try not to add to that stress by beating yourself up.

I had a stage 1a removed in July 2007. The general surgeon who did the WLE informed me that a sentinal node biposy was not necessary, due to indicated depth. My primary care physician indicated that I did not need follow up with a dermatologist, and that he was capable of doing skin checks along with a general physical check up every 6 months. April of 2013, I had a very unexpected seizure while at work. Trip to the ER revealed brain lesions. Further scanning found a golfball size tumor in the lung, as well as two additional smaller lesions. Suspicious spot on the liver was also noted, but never confirmed as part of the metastatic melanoma diagnosis. Needless to say, we RAN away from local treatment options, and headed to USC in Los Angeles for an actual shot at saving my life. It worked. We opted not to try to sue my physician. In his defense, he was doing everything "standard of care" that most doctors are taught. I'm not sure he could have noted anything or done anything differently that may have made a difference in my flying leap progression. No new skin lesions appeared, and I was in the best shape of my life… strong as an ox and riding my bicycle 250 miles per week with men who race! No headaches. No vision changes. The only small thing I noted, was that I felt as though I was having some trouble breathing when riding up hills. I chalked it up to being overtrained or possibly having seasonal alergies. Nobody thinks "lung tumor" when everything else is so solid. I'm honestly not sure there was anymore that could have been done to be more cautious. Going from a low stage to IV is an oddball thing to do. It sucks like hell for those of us who have faced it… but it puts us in about a 2-4% of the unfortunate population. 

Hi, I was diagnosed with stage 3 melanoma on my right arm, had it removed and also 27 lymph nodes. Just finished 1 year of Opdivo, thought it was in the clear. Last CT showed multiple lesions on lung and liver. Going in for brain MRI, starting on Yervoy/Opdivo next week. Feel hurt, confused as to why it wasn’t noticed during treatment. I think it is a good idea to have more often CTs, as my last one was in April 2018.
Wishing you luck and peace of mind, because that is one of the hardest things during this… peace of mind