Our 26 yr old son just back from Marin... - Melanoma Caregivers

Melanoma Caregivers

Our 26 yr old son just back from Marines dx Melanoma Stage 3. We need to understand the next step.

Stayingfaithful5
Stayingfaithful5

Found tiny spot on arm, dx 2tb, had SNLB just found out primary node came back positive with microscopic melanoma cells. All margins are clean from surgery. Surgeon has referred us to an oncoclogist. What do they look for next and don't understand chance of survival. Surgeon kept saying he will be "fine" due to the fact he's young and advancements in treatments. Still don't understand what we're facing here. Any help would be appreciative during this shock and waiting period.l

7 Replies
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Even though I’ve been through this 2x’s, idk what dx 2tb means. Wasn’t the surgeon a surgical oncologist? Usually when the primary lymph node has melanoma they do a lymph node dissection and remove the surrounding nodes.

That is the worst advice I’ve heard. Yes see an oncologist- preferably a melanoma specialist. But I would not underestimate Melanoma. Also, a preventative treatment of interferon is out-dated. I would see if he is eligible for any clinical trials. There are many organizations that match patients with trials.

Please keep us posted. Prayers for your son.

Toniff
Toniff in reply to Saumann

Yes. You need to see an oncologist that will recommend therapy to decrease the risk of melanoma returning. They all have a lot of side effects but he has to figure out which therapy is best for him. U need to have no regrets!!!! Do the treatment now. Don't wait! Stage 3 has a high risk of recurrence.

Melanoma is an extremely aggressive cancer and very hard to treat. If you had a positive SLN biopsy, a complete dissection of the nodes in that lymph mode basin is recommended. Also, you must have adjuvant treatment. Have your doctor discuss with you the options and do your own research on them too. The easiest option is not always the best option. If you want to know your prognosis, you have to pin them down and make them tell you. Tell them you want the best and worse case scenario, and tell them you want the truth! Don't let them get away with "I don't really know." They have a good idea! If you don't want to know or discuss your prognosis you need to let them know that as well. Good luck to you, and hope for the best. If you don't have a melanoma specialist in your area, it might be worth your while to travel to a large regional medical center that does. Best of luck to you.

missyrand
missyrandAmbassador

Dear Stayingfaithful5,

I send you support in this very challenging period of waiting.

Like others below, my advice it to become as educated as you can and write down all your questions. The initial best practice with all melanoma is to cut it out if at all possible. Then do adjunctive therapies if needed. This is usually recommended for anyone with Stage 3 melanoma at this point in the science, but you want to support your Marine in getting advice explicit to your son's situation. Interferon is NOT the current best practice treatment, but it takes looking at the particulars for his information to review choices to know the best match for him. Is he getting services through the VA?

The best source for what to do for treatment is to take all the tumor board data, scans, and bloodwork to a melanoma specialist. A standard oncologist is rarely skillful enough unless they have an excellent and ongoing consultation relationship with a melanoma specialist. A dermatologist is great for initial screening and referral, but they are not equipped to treat Stage 3 melanoma.

I hope that you feel comfortable reading through other posts which give great research hub locations and general advice. This period of waiting and gathering information is highly anxiety producing, and I hope that you and your family do the best you can to balance your need to become informed and take action alongside engaging in a life of joy and meaning.

You didn't say which part of the country you live in, but you might check with the Melanoma Research Foundation to see if there is a family support group in your community.

My husband was diagnosed 2.5 years ago with stage 3 and has had surgery that we initially thought got all the cancer. But melanoma is a sneaky little bugger that spreads through the blood and lymphatic system (meaning it can travel to anywhere). He had spread close to where the initial small lesion was within 6 months of the surgery, so he started on immunotherapy (this is an infusion he receives at a clinic once every 3 weeks). He has close monitoring with the MD every 3 weeks and blood work every 3 weeks. He also has PET scans every 3-4 months to look for spread over his entire body/ organ system. He has tolerated the Keytruda he takes very very well with very low side effects. He continues working a fulltime professional job. This summer we insisted on having a funky looking mole removed that they didn't think was melanoma which unfortunately came back positive, so this advanced him into Stage 4 because it was a "distant site" from his original location on his scalp, so he continues on the immunotherapy.

Living with melanoma and going for NED (no evidence of disease) is the goal with treatment.

I wish you all success in locating a great practice, and in seeing if he qualifies for services with the VA or with NIH for Clinical Trials (which happen all over the country).

Is this helpful?

Missy

Thank you so much Missy and yes this has been so surreal. It's all happened within the last three weeks, diagnosis of 2tb melanoma, surgery to remove, SNLB.

Pathology came back with "microscopic" in sentinel lymph nodes. Stage 3.

We are bringing all our questions through research to the oncologist Friday and will request a Melanoma specialist. The surgeon is one of the TOP in all of Arizona for Melanoma.

Our son is very fairy, red head with blue eyes. Raised in So Cal but lathered in sunscreen as I was very protective! No freckles on a red head! He obviously hiked quite a bit as a Marine and said he got sunburned a few times. The spot was so tiny. I had stage zero Melanoma at 48, my sister at 34 years old.

Thank you again for all your support and knowledge.

missyrand
missyrandAmbassador in reply to Stayingfaithful5

I'm glad you all have found an expert in Arizona. It's good you have brought questions and will have someone scribe the answers. One of the things they may be able to tell you about the pathology of his tumor is if it is BRAF positive because some treatments target this genetic mutation. Even though my husband has the "wild type" (non-BRAF) he has still benefited from immunotherapy designed for BRAF positive melanoma. Your family sounds like you all have a higher risk pool, and I hope all of you are getting targeted dermatology checkup's at least yearly.

The community remains here for your family as you continue in this journey.

Missy

Melanoma is very scary and as a mother with a child it is horrifying, no matter what age. This is a very tricky disease because it doesn't act like other cancers, so you want an expert. Yes cases can be genetic so no matter how careful you might have been with lotion it can still arise. The margins are clean, but were the lymph nodes tested? Great advice from everyone here. Best thing I did was educate myself on treatments and what questions to ask.

My son was diagnosed, but wasn't as lucky the disease had spread into the nodes. They removed the affected nodes , three years clean and said he was good, but he wasn't. The disease had traveled to his nasal passage. Being young has its advantages, but many of the studies' results are from older patients. My son entered a trail for immunotheraphy, NED for the time being. We are blessed that the drugs worked. New combinations of drugs are coming forward all the time. I follow Chaotically Precise: Life, Love , and Melanoma she has so much information on her blog so helpful.

Good luck

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