Melanoma stage 3C: Hello everyone! Just... - Young Adults with...

Young Adults with Melanoma
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Melanoma stage 3C

hopeful_spirit
hopeful_spirit

Hello everyone! Just want to introduce myself. I’m 23 years old and I was diagnosed with stage 3C melanoma on my left inner elbow in April of 2018. I had a wide excision done and a sentinel lymph node biopsy of my armpit. I had one node that was cancerous which led me to starting the Opdivo immunotherapy treatment. I’ve been on it for 9 months and I will be done in June! I’ve had clear scans all the way through. The only recent bad news I received was that Pregnancy can increase my chances of having a recurrence of melanoma, and apparently it was one of the few cancers that can be transported through the placenta to my baby. Not planning on having kids anytime soon but it was an option at some point, and as of that I’m not really sure anymore. Hoping I can relate with others and how they cope with all of this.

17 Replies
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Hi! I’ve shared my story on here before but I was diagnosed with 3a last year 6 months after having my first baby. My melanoma specialist thinks my pregnancy accelerated a mole into turning to melanoma. My doctors have said no pregnancy’s for a few years and I am almost certain I won’t have another. I don’t want to ever deal with this again but I do have one child. Maybe you could look into other options like a surrogate. You are still so young too. Maybe after a few years you will be in the clear and have a successful pregnancy!! I am done with opdivo in July! So ready. Have you had any side effects??

The only side effects I’ve had are high liver enzymes, tired but I still work, and sometimes itchy! Other than that I’m super grateful for how good this treatment has been to me. That is so bizarre about pregnancy increasing your chances. I was considering surrogacy or adopting, but I still have plenty of time to think. Just want to get through these last two months and next four years until I’m considered cancer free and go from there

Melanoma is one of the cancers that you don’t get a “cancer free” with. Just “no evidence of disease”. Mine came back after five years and now I am a stage 4. I had one child, I won’t have any more as pregnancy increases your chances of having melanoma return, and your child could be born with it, not to mention that melanoma can also be hereditary. I don’t suggest ever having a child if you’ve been diagnosed, I know it’s depressing, my husband and I had just decided to have a child together when they found melanoma on my ovary. My heart aches for all.

Did it come back in the same spot? What was your staging to begin with? Are you on any treatment? Do people live long lives with melanoma? I just feel like everything has happened so fast, and I just want a better outlook on life, in terms of knowing what I’m really up against.

I was a 2c yo begin with in 2013. It started in my neck and cane back in my ovary. It depends on your stage as far as life expectancy, but opdivo and other immunotherapies have extended lives by at least 18 months. Since I’m a stage 4 now, without immuno I would’ve been expected to have 6 months. I have a 30% chance for 5 years. So better than the 15% I started out with. And it depends on where it spreads to also. I’ve met people who have lived for ten years after stage four or have had no evidence of disease, but I feel like those are the rare cases of survival. I’ve done hours of research, as I do not feel the doctors I’ve worked with are consistent or knowledgeable since there’s no specialists here. I traveled to Utah for a second opinion. I always recommend a melanoma specialist and a second opinion. It’s sneaky and aggressive. I’m 28 and I have an 8 year old son. My son says he’s a warrior and I must be too. I’m going to put myself through any treatment I can to extend my life, but I know realistically, I shouldn’t expect to be here five years from now.

Hi there! Our stories are so similar. I’m 27, diagnosed with stage 3A and have been on Opdivo since October of 2018 and will have my last treatment in September!

I recently went to a cancer convention for young adults and spoke with a fertility specialist. She encouraged me to reach out to an MFM (maternal and fetal medicine) for further information about pregnancy and melanoma. We also discussed using (and avoiding) certain types of birth control and how long you should wait if you are wanting to start a family.

Honestly, I was super overwhelmed with all the information and misinformation out there. It’s very frustrating that because immunotherapy is so new, they really don’t know how the treatment impacts people and their health long term.

So I’m not really sure how to get through it! Other than it helps me to have as much knowledge as possible and realize that I’ll get to each life milestone on my terms and pace, even if that means I’m a little “late.” :)

Hi Courtney, thanks for sharing your experience. I'm 27 as well and trying to sort through all the information too! Which types of birth control did the fertility specialist recommend avoiding for people with melanoma?

I like your perspective on getting to life milestones on our time :)

thanks!

Moriah

Congratulations to you! I’m so happy to hear Opdivo has worked so well with you! In the comments, I feel the topic is unfit for the way that I believe this experience has changed my perception, however I will summarize it with cautious words. Making children has become a selfish endeavor for me. My DNA could very well be a time bomb for an innocent child. Many children in desolate countries wish to be brought to America, and my citizenship comes with the lovey privilege to grant that wish. If I desire the experience of parenthood, I believe I would take that path. I hope I did not offend.

-Ryan

Asp2013
Asp2013
in reply to Ryan2

I agree.

3c is a tricky stage, because if you haven’t had any continued evidence of disease, and no major organs, you have a pretty good chance of living without reoccurrence. I would stay on any treatment they have you on for as long as possible, opdivo has no guideline for stopping treatment and it seems to work more as a stability drug than a removal one if you will. Many see shrinkage but most have a stable condition on opdivo, talk with your doctor about extending your treatment.

I’ve never had any evidence of disease on scans-no tumors or anything like that.

That makes it’s a better prognosis !

I am fairly sure that pregnancy is what brought on my Melanoma. You should definitely continue with regular check up and particularly if you decide to have a baby. Best wishes on this journey.

Hi!! I have had my concerns too. My situation is similar, age 29, wide excision on ankle and one node with cancer. I've only had two Opdivo treatments. So far doing okay.

I was really concerned too about getting pregnant in the future. I researched and researched but I couldn't find anything substantial about pregnancy causing melanoma or recurrence. I hear a lot of people say the same thing though, would you happen to have any materials or know of any studies about this?

I'm afraid to bring it up to my doctor because my boyfriend comes to most of appointments and am not comfortable having that conversation with them both.

I really hope it's just an associated occurrence and not something that is a direct cause. I don't know when/if kids are in my future but I'd to be prepared.

hopeful_spirit
hopeful_spirit
in reply to JCKI

So Like I said my doctor just mentioned it to me randomly, im going to talk to a melanoma specialist about it. Concerning talking to your doctor, I don’t think you should feel uncomfortable asking that because it could be detrimental to your health and my Doctor was super adamant about me not getting pregnant during this treatment and tears to follow. I think it’s valid to ask. But I don’t know if you use Cannabis at all but I’ve used it throughout my entire treatment 9 months-and it has made a world of a difference, especially post treatment on the way home. It’s definitely subsided many side effects.

I also found this article which, if I get the chance will discuss with my doctor.

sciencedaily.com/releases/2...

There is a lot of research that supports the side of melanoma being activated by hormone levels during pregnancy. It can be passed on to your newborn as well, and isn't recommended to have a child or become pregnant after a dx of melanoma. If you’d like information, I can send you clinical reports describing such information.

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