First post here: Dx at 23. Nodual... - Young Adults with...

Young Adults with Melanoma
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First post here

Asp2013
Asp2013

Dx at 23. Nodual malignant melanoma. Wide excision with clear margins. Now it's 5 years later, CT revealed 5cm adnexal mass. Dr thought it was benign, I knew it was MM. Surgery was on the 12th of Dec 2018. Removed right ovary and fallopian tube. Now labeled distant metastatic melanoma. Skipped the lymph system and is hematogenous. Waiting on treatment plan. I've been told the prognosis is poor, and limited treatment available.... Anyone else?

6 Replies
oldestnewest

Mine is not nodual but also skipped the lymph system and went straight to blood. Traveled cross body to breast and back. Then brain. After surgeries, treatment and some radiation, I am here! I have been NED for 5 years. Don’t lose hope!!!

Hidden
Hidden

Do you have chemo options? Do you know what type it is? Typically we get treated based on the Braf or V600 markers. Ask your doctor about chemo and immunotherapy options. Unfortunately this cancer can lye in wait for years. There are many new treatments available and possible clinical trials you can participate in! Hang in there and don’t give up! Educate yourself as much as possible on the disease! Sending you my love!

Asp2013
Asp2013
in reply to Hidden

I’m not sure what you mean by type... I have nodular MM. Breslow was 5.2 and Clark’s level 5 when staged. Ulcerated.

Hidden
Hidden
in reply to Asp2013

Mutation would have been a more appropriate designation, sorry about that. I’m glad you are giving the immunotherapy a try, it had been great for my daughter.

I haven’t had genetic testing to determine any markers such as Braf. I am advocating for opdivo/ipi treatment. And the type is malignant melanoma of the ovary. It isn’t an ovarian cancer, but a metastasis of the MM I had in 2013. I am considered stage 4. It is also in my liver.... which they also thought was just a ball of blood vessels. But I have found treatment options since asking. I appreciate the feedback.

Robynfine
Robynfine
in reply to Asp2013

They need to test the tumor itself to determine the mutation.

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