Melanoma (internal): What questions should we ask the oncologist?

Posted by marywc @marywc, Aug 6, 2024

My daughter had what was thought to be a cyst from endometriosis and scar tissue from her 5 year old C -section removed. The doctor was 99.9% positive it was endometriosis. Nope. He was wrong. Turned out to be a 6 centimeter tumor - Melanoma. Internal turnout. EVERYONE on this thread. Please get a full body PET scan yearly after you have had skin melanoma. My daughter had a tiny spec of melanoma removed from her next 12 years ago. It is not uncommon for melanoma to go dormant for years and reappear INTERNALLY. My daughter’s PET scan is this Friday. Then she meets with the medical team on the 14th. She’s been told it is at least state 3 and could be stage 4. This was a shock to us all. We are reeling but still don’t know the full extent. It may be everywhere. Brains tumors can be melanoma. What questions should be be asking her melanoma oncologist. We are all scared.

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

Profile picture for Susan, Volunteer Mentor @grammato3

@bluelizard: You bring up an important point - as we age, it can be especially helpful to stay engaged in our health care, so small concerns don’t turn into bigger ones. Most people with access to insurance should have the benefit of this ability for medical visits and/or medically necessary interventions.

I can well understand the concerns following the diagnosis of skin cancer, as I personally have had all three: several basal cell (I will be undergoing treatment for yet another this coming Tuesday), squamous cell and malignant melanoma that has metastasized. It can be very frightening indeed. You have been wise to report and follow up with with your medical provider when you notice something amiss. According to both the National Comprehensive Cancer Network (NCCN) and the American Academy of Dermatology, for Stage 1 melanoma frequent full skin exams and lymph node checks, typically every 3-12 months for the first 5 years, focusing on self-exams and physical checks for recurrence or new primaries, with routine imaging generally not recommended unless symptoms arise, stressing patient education and personalized risk assessment is the recommendation.

Being mindful of our health means taking symptoms seriously while also trusting evidence-based medical guidance and being an active participant in your care. It can be troubling after any diagnosis of cancer to fear an untoward symptom as alarming but helps to keep in mind that while health concerns are valid, they’re best addressed through informed medical care rather than fear or worst-case assumptions. Does that sound like a reasonable approach to your own healthcare that you've largely been following?

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@grammato3 Thanks for the reinforcement. To be frank I believe I need to do more informed medical seeking than imagining the fearful worst-case scenarios, but those fears are always with me I'm sad to say. I appreciate your input and will add to my (very small) list of resolutions and try to strike a better balance. Happy, healthy new year one and all.

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Profile picture for bluelizard @bluelizard

@grammato3 Thanks for the reinforcement. To be frank I believe I need to do more informed medical seeking than imagining the fearful worst-case scenarios, but those fears are always with me I'm sad to say. I appreciate your input and will add to my (very small) list of resolutions and try to strike a better balance. Happy, healthy new year one and all.

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@bluelizard: Remember that above all else you are a survivor!
Here is some additional support for those of us who have been touched by cancer. Let’s turn that “C” word into something more: compassion, for each other, but also ourselves.
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/emotional-recovery-after-cancer-treatment

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Profile picture for marywc @marywc

Hello! It was my daughter who was diagnosed with 2 metastatic melanoma tumors back in July; a 5 cm in her left lung and a 7 cm in her left femur. Thankfully she lives near enough to John Hopkins in Baltimore that she can drive there and is being treated there. She’s had 4 immunotherapy treatments and her lung tumor has shrunk to half its original size and her tumor i. Her femur is gone. A combination of radiation and immunotherapy dissolved/destroyed it. We are overjoyed. I don’t know what Keytruda is. But find a fascility that will do immunotherapy which was developed specifically for Melanoma cancer and is the most effective against melanoma. Immunotherapy works!

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@marywc
I know you posted over a year ago, and I hope your daughter is still doing better. You said in your previous post that anybody with skin melanoma should get annual PET scans. I have had melanoma 6 times, the last one recurrent and invasive and I am scheduled in two days for staged excision. I am thinking maybe I need a PET scan although nothing has been said. Thinking I should ask the surgeon about it.

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