A “difficult case” – differential diagnosis includes melanoma

Hi Michelle, I also live in the Bay Area, hope you and your family are doing ok with this awful air quality. I also had Kaiser when I was diagnosed almost exactly 3 years ago. I was misdiagnosed which led to my melanoma growing and spreading, not the best scenario. I got a second opinion from the melanoma center at UCSF and switched to Blue Shield (on a positive note, this time of year is the best time to be diagnosed if you need to switch to better insurance). Thankfully Kaiser uses UCSF pathologists as second opinions for most cases and UCSF pathologists are some of the best in the country when it comes to melanoma and "difficult cases" such as yours. I don't know that much about Spitz, but I have read on here many times how they cause a lot of question about whether it's a Spitz or a melanoma.

Absolutely go to UCSF melanoma center. Dr. Ortiz is the dermatologist I first saw and she referred me to Dr. Tsai there at the same center who is my oncologist. You may not need on oncologist, they are really only needed for those with melanoma that is stage 3 and up as those are the stages where treatment outside of just surgery is an option. All the doctors I have seen there have been nothing but amazing and full of knowledge. It was night and day from my experience with Kaiser. I had to start treatment at Kaiser since I had to finish the year with my then current insurance plan. I consulted with my UCSF oncologist first, had her talk with the Kaiser oncologist, and had to do 2 infusions with Kaiser before January came and I was free and clear to go to UCSF. It is 3 years later and I have been off treatment for 1 year and doing great! I have scans at UCSF coming up in December and I am sure they'll be very boring as the last 2 sets of scans have been 🙂

Please feel free to email me directly, you can do so by going to my profile on here and click the Contact tab. I am available to chat, meet up with, vent to, whatever you need. I know this is not the easiest of things to think about, especially during the holidays.

I’m not sure if this will answer any of your questions…but we also have Kaiser ,  East Bay Area. When my son was diagnosed, he had a path report from Kaiser, then UCSF..both came back melanoma. His doctor then sent it to a third pathologist at U Mass on the east coast, mostly because of his age (21) and unusual location of the melanoma (oral, tongue). The third path report basically said…unusual, severely atypical, melanoma can’t be ruled out. So his Kaiser doctor chose to treat as melanoma, plus they found atypical cells in his lymph nodes. We asked for, and Kaiser gave us, a second opinion at Stanford. They didn’t have anything else to suggest other than what Kaiser did…interferon. Granted this was 9 years ago when there were very limited options. He got his treatment at Kaiser as well as all the surgeries and follow up scans. 

im not sure what my point it..I guess I feel like Kaiser did a good job and allowed outside expertise which we appreciated. I know not everyone has the same experiences with them

good luck to you ..hang in there!

Good morning,

I also had an intial diagnosis of indeterminate.  I went to Emory initally and then to Sloan Kettering.  After checking the pathology and noting there were cells in my lymph nodes, they finally made the call that it was melanoma.  In speaking with Dr. Coit, my surgical oncologist, he shared with me that a good number of diagnoses fall under that gray area.  In further weighing our options, we agreed to treat my particular situatin as melanoma as the downside risk of undertreatment made me uncomfortable (plus the number of clinical factors pointing in that direction anyway).

As for changing plans, I'm not sure there's a downside (out of pocket?) as this usually means mre choices as to who provides your care.  

Good luck – keep us posted!

Hi Anon, i really hope you land a good Oncologist team at Anthem, like yourself, I currently have Kaiser {since 2003, but was diagnosed with Melanoma in 2008} i "may" move to Anthem, not because of lack of care {im still alive since 2008"s primary of stage 3b!!} i may switch once my employer takes me off their Ins plan, but i may qualify to go back with Kaiser through our Calif "LA Care", i dont wanna lose my team, im actually nervous about this but i digress lol..Im also here in Calif, SoCal {Van Nuys} keep that breathing aparatus on!!..i pray yer newer team tackles the question of "what direction" should you go with, just remember, were here for you, i recomend "re-naming" yourself from Anonymous to a Ficticious name, that way we all know who you are "Ficticioslly" from the rest of everyone…stay diligent!

Hello to you! I was diagnosed in August 2018, similar situation. Atypical spitzoid most consistent with melanoma. Due to my age (44) it was determined that treating it as melanoma was most prudent, as it most certainly is melanoma when in my age bracket. Mine was considered "thin" so I had the wide excision and now I watch and wait. I am in Baltimore and am treated at Johns Hopkins, but I reached out to UCSF upon diagnosis because they are said to have the most information about spitzoid.  So….you are in the right place!