› Forums › General Melanoma Community › Autoimmune Disease and Advanced Melanoma
- This topic has 3 replies, 1 voice, and was last updated 10 years, 2 months ago by
Janner.
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- January 2, 2016 at 1:39 pm
Hi, everyone. I'm so glad I found this forum.
My husband is 36 with a rare autoimmune disease called CVIC, we have 3 young children, and we recently moved across country where we know nobody. We moved here in summer and DH (dear husband) had a mole on his lower back near the spine that started to protrude. Within a month or two it was about the diameter of a nickel, bluish-grey, and started bleeding. He had it biopsied beginning of November (took us a while to get him in with needing referrals, etc) and within a few days they called us back. Melanoma, aggressively deep, 3.9 mm, ulcerated, and high mitotic rate.
It took another 3 weeks to see the surgical oncologist at what is supposed to be the top melanoma center on the west coast with one of the best doctors (he is great, but we are used to a more personalized, small town standard of care where the actual doctor calls back with results in a timely manner).
Doc decided due to presentation at initial biopsy, PET scan was to be done before SLNB. I had to call the office for results and they called him back. PET showed uptake in lung, chest CT scan was schedule for a few days later. Again, we had to call for results and CT was inconclusive but nodule was in upper right quadrant and didn't look like melanoma.
Primary melanoma was on the trunk in a spot where the oncologist said it could spread to either armpit or groin lymph nodes.
SLNB was on the 18th. Once again, were told results would be by Christmas Eve. DIdn't hear back. I called the 28th as soon as offices were open again and they called DH back with the news that BOTH armpit and groin lymph nodes that had been removed/biopsied were positive for melanoma. He didn't ask the right questions, though, and they didn't give many answers. This was Monday. It is now Saturday and we go in this coming Monday (the 4th) for follow up with the doctor where I'm sure we will know more. Nodes weren't palpable and didn't show any evidence of disease upon extraction, so that is good news – but I am wondering if this will be considered stage 3 or 4 because it has spread to two different spots. The chest CT scan will be repeated, too.
Has anyone had experience like this where primary was on trunk and it initially spread to two different areas? And it is now beginning of January – two months after initial diagnosis – and we still don't know what stage or have many other details. Is this common for a big city melanoma specialist? It's just so frustrating. The emotional struggle is taking its toll and like I said, we have no family within 3000 miles so it's been tough with the little ones.
Thanks in advance for your help. I'm sorry everyone is going through this, yet I'm glad there is hope with new treatments and a forum like this where we can share experiences.
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- January 2, 2016 at 3:37 pm
Because the SLNB spreads to two basins, they are both considered "local" to the original lesion. So that is regional and considered stage 3. If the lung nodule were positive for melanoma, that would put you at "distant" disease and stage 4. And yes, while it isn't the norm, there are plenty of people whose SLNB have gone to multiple sites. More commonly it might be both armpits as opposed to armpit and groin. Until the CT is repeated and they are sure about the lung nodule, staging can't be complete. So that is probably why it isn't being discussed.
Sometimes you have to be your own advocate and if you are truly not happy with the way the doc is handling your care, find another specialist. You can still be treated well even in big cities and big practices and some practices are good at it and some not so much. Your expectations play into it as well. Honestly, it is always good to get a second opinion so I'd schedule that now so you can discuss treatment options with multiple docs when staging is complete. Because of the auto immune disease, that will be even tougher for melanoma treatment.
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- January 2, 2016 at 3:37 pm
Because the SLNB spreads to two basins, they are both considered "local" to the original lesion. So that is regional and considered stage 3. If the lung nodule were positive for melanoma, that would put you at "distant" disease and stage 4. And yes, while it isn't the norm, there are plenty of people whose SLNB have gone to multiple sites. More commonly it might be both armpits as opposed to armpit and groin. Until the CT is repeated and they are sure about the lung nodule, staging can't be complete. So that is probably why it isn't being discussed.
Sometimes you have to be your own advocate and if you are truly not happy with the way the doc is handling your care, find another specialist. You can still be treated well even in big cities and big practices and some practices are good at it and some not so much. Your expectations play into it as well. Honestly, it is always good to get a second opinion so I'd schedule that now so you can discuss treatment options with multiple docs when staging is complete. Because of the auto immune disease, that will be even tougher for melanoma treatment.
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- January 2, 2016 at 3:37 pm
Because the SLNB spreads to two basins, they are both considered "local" to the original lesion. So that is regional and considered stage 3. If the lung nodule were positive for melanoma, that would put you at "distant" disease and stage 4. And yes, while it isn't the norm, there are plenty of people whose SLNB have gone to multiple sites. More commonly it might be both armpits as opposed to armpit and groin. Until the CT is repeated and they are sure about the lung nodule, staging can't be complete. So that is probably why it isn't being discussed.
Sometimes you have to be your own advocate and if you are truly not happy with the way the doc is handling your care, find another specialist. You can still be treated well even in big cities and big practices and some practices are good at it and some not so much. Your expectations play into it as well. Honestly, it is always good to get a second opinion so I'd schedule that now so you can discuss treatment options with multiple docs when staging is complete. Because of the auto immune disease, that will be even tougher for melanoma treatment.
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Tagged: cutaneous melanoma
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