Three days into stage four diagnosis - Young Adults with...

Young Adults with Melanoma
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Three days into stage four diagnosis

LRaeRich
LRaeRich

Hi all,

So happy this place exists. In feb this year, I had an in situ removed in my leg and thought all was good. Fast forward to last week when I went to hospital with pounding headaches - nothing showed up on CT so was sent for MRI. Found a 4mm inoperable metastatic spot in my brain jumping me straight to stage four. Neurologist found all of this so haven’t even met my encologist yet or had the results from the second full body CT to find out where else this beast is hiding. I’m a 26 yo female and am terrified. I know this isn’t good, but I just need to hear from others in this situation it’s possible to crush this? Right?

11 Replies
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Hello, i’m so sorry to hear that. But in situ melanoma is not common distant melanoma. Do you have sentinel lymph nodes biospy and Pet scan after surgery ?.

LRaeRich
LRaeRich
in reply to Kevin0301

I’ve got no more information yet on where else it is. I had 4 a-typical excisions (not melanoma) after my WME but was never given any scans after the in situ to see if it was anywhere else.

Im meeting with the encologist in early January for the first time so I’m stuck researching worse case scenarios until then. No PET scan yet, just several cts and the MRI and I haven’t had the results told to me yet or the full body CT. It could be everywhere, it could be nowhere I guess.

Asp2013
Asp2013
in reply to LRaeRich

I would guess that you have a primary they weren’t aware of. But also, clean margins doesn’t mean anything. Mine skipped lymph nodes and went straight to blood borne distant met.

So sorry to hear about the recent news. I don’t have the same situation as what you’re going through but I want you to know you’re not alone.

My best suggestion at this point is to get to the oncologist as soon as you can and try not to spend too much time researching on your own online.

Hoping for the best for you.

I don't have the same situation, but I'm cheering you on and you're not alone! Try to stay away from your own internet research and stick to positive and uplifting outlets.

Hello, I just want to let you know there is hope! I was stage 1 and jumped to stage 4. I also had brain mets. If the met is small enough maybe gamma knife will be an option. It was for me on three mets and it has a 99% success rate! Also, the new immunotherapy combos do cross the blood/brain barrier! Don’t give up! It won’t be easy but you can do this!! Best of luck! Fingers and toes crossed for success!

Make sure to talk to your doctors about Keytruda. It literally saved my life! Stage 4 two years ago and now in full remission.

Asp2013
Asp2013
in reply to mnimz

For melanoma, there is no remission. Just NED

It is. Look into gamma ray knife for brain Mets. Anywhere else, use opdivo. Those are showing best results. And I’m 28 and was just hit w stage 4. Ovary, pancreas possible brain involvement, first dx at 23. Getting past mri this week.

Hey there! I recently went from fine to being admitted to the hospital with brain Mets, then found a spot on my liver via biopsy and was diagnosed with stage 4 melanoma - no primary ever. I’m 36.

The waiting game on a treatment plan and details is torture. Stay positive the best you can and seek out people who encourage and uplift! There are lots of us fighting this fight together, ok? There is hope!

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