- November 29, 2023 at 4:23 am
I had blood in my urine and they found a tumor in my bladder. It turned out to be melanoma, they say it’s very rare, only around 35 documented cases in the bladder. I don’t have any melanoma on my skin, I’m very diligent about getting checked, so this is a big shock.
They are still trying to figure out the primary. My PET scan shows that it’s in a bronchial lymph node. It might also be in my lung, but it’s too small to be able to show up on the PET.
They checked behind my eyes and they look fine. Did a MRI on my brain and it looked good as well.
I’m looking for help trying to figure out where to get care. I’m with Kaiser right now in Southern California, Orange County. It’s open enrollment, so I’m thinking of switching insurance to a PPO, so that I can go to cancer center hospital. I have scheduled a second opinion at City of Hope. I was curious if anyone had any recommendations for other cancer centers. I have no issues traveling for treatment, I am just hoping to find the best care and a place that might be able to help with rare cases of melanoma.
If you’re reading this, thank you for your time:)
- November 29, 2023 at 9:18 pm
Sorry for what you are dealing with. Sadly, melanoma can do anything it likes. However, it is not the death sentence it once was. Especially since it seems you are dealing with a localized lesion that was found relatively early. You may find the primer I put together helpful in starting your understanding and formulating questions about your treatment and options –
Further, there is a link at the end that notes world renowned melanoma specialists.
Know that there are even more treatment options in studies. Hang in there. There is certainly hope! I wish you my very best. Celeste
If you don’t mind me asking. I didn’t hear back from either of the doctors today. Do you think it’s more important to get in with the right doctor, or try to get an immunotherapy going sooner? Would it cause any issue to wait for the right doctor?
- November 29, 2023 at 11:32 pm
These days most local oncologists are FINALLY well versed in administering and watching appropriately for (and treating if need be) side effects related to immunotherapy. This was not always the case! Currently, for very straight forward melanoma cases, a second opinion with an expert is not required, though never a bad idea. However, treatment is essential. Getting treatment with immunotherapy (the ipi/nivo combo in my opinion as is has the best response rate) quickly would be my priority. However, given your situation I would feel better with a follow-up second opinion. I would look to their expertise re: Their best treatment rec. Their rec for follow-up. Any additional tumor testing they would suggest. Any additional information, ideas, or advice they might have.
- December 1, 2023 at 8:21 am
Often the local onc can put in motion any suggestions they make. Or, you can switch to the expert’s care entirely. I would make sure that I could follow-up with them again, should any complications (side effects, progression, etc) arise.
I appreciate your time bubble, it’s very kind of you take the time to do so. Thanks to your link I was able to locate 2 doctors In my area and that are experts and they are both willing to meet with me next week.
- December 2, 2023 at 12:16 am
My current oncologist did mention the ipi/nivo combo to me and I’m meeting with her next week too.
Thank you again, you have given everyone such a valuable resource to reference!
camanParticipantHi, sorry you are going through all this. I also live in Orange County. Take a drive to LA and see Dr Omid Hamid. Not only a real good person but a leader in melanoma research and will guide you in the right direction and treatment plan. All the best to you.
- December 3, 2023 at 12:15 am
Dr Hamid saved my life with Stage 4 melanoma. I highly recommend him because he is not only a brilliant doctor, but has dedicated his life to melanoma research and treating melanoma patients. You will not find any other doctor with his experience in melanoma treatments, melanoma research and clinical trials for melanoma than Dr Hamid.
- December 7, 2023 at 10:56 am
So wonderful to hear! Looks like I will be doing one of Dr Hamid’s clinical trials. I really appreciate everyone that has taken the time to respond.
- December 11, 2023 at 5:57 pm
Miriam KadoshKeymasterThank you all for your insights here. We also have a treatment center finder here if you need additional help finding a center near you: https://melanoma.org/treatment-center-finder/
- December 18, 2023 at 11:12 am
The MRF will be doing a patient and caregiver symposium with Dr. Hamid on February 7th. If anyone is in the area we would love to have you register and join! Reach out to me at [email protected].
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