Home Forums Melanoma Diagnosis: Stage IV Newly Diagnosed-So Far MUP

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  • #20399
    buffcody
    Participant

    On June 8, I received the results of a needle biopsy done on a suspicious lung mass. Turned out to the amazement (mine too) of my primary physician to be metastatic melanoma. Since then I have visited with a podiatrist, a dermatologist, a otolyngarist, and today an opthamologist. No primary found. My PET scan came back with no activity except for the 4 cm. tumor in the lower lobe of my right lung. The oncologist does not know whether I am dealing with a melanoma of unknown origin or a primary to the lung. I don’t know if it matters much either for treatment or prognosis. I also don’t know how important the melanoma pros will consider it to find out. But it certainly seems to the medical folks I have spoken to to be a very rare case. Anyone like me out there on the Forum?

    I am looking into going for the treatment that the local oncologist considers to be advisable to one of the following three: University of Michigan, Karmanos in Detroit, or Sloan-Kettering Memorial in NYC. Treatment suggested is removal of tumor with curative intent followed by possible chemotherapy, perhaps through a clinical trial. At the moment, with the first appointment set up at the closest facility, the Multidisciplinary Melonoma Center at the University of Michigan, I am tempted to get the surgery done as quickly as possible, even if I do not have the immediate opportunity to look carefully at the other two centers and then save the next step of picking the best facility for the chemo post-surgery. Any recommendations among the three places listed and my tendency to want to get the tumor out pronto before choosing the next phase?

    I’m a 71 year old male, in excellent physical condition, a survivor of male breast cancer, stage 2, diagnosed 9 years ago. I know MBC survivors have a greater chance of developing a second primary than the average. I wonder if there are any linkages to melanoma. My maternal line is riddled with melanoma. Also sarcoidosis and Ewing’s sarcoma. I wonder if either of those latter two could be “family” with melanoma?

    Any help/ideas would be greatly appreciated.

    Frank

    #54953
    lhaley
    Participant

    I believe that statistically 8% of the people with no primary mole site has an unknown primary. If you have this lung tumor surgically removed you will be considered to be NED (no evidence of disease) and unfortunately most Drs will not prescribe either chemo or immunotherapy for melanoma. From my experiences (have been stage IV fodr 6 years) I have been told that there must be something to be “watched” to see if you are responding. I know of one trial at Moffitt but you have to have a specific HLA0201 which is tested with a blood test.

    There are different opinions if you should go surgically or systemically which is why you should get talk to different Melanoma Specialists.

    Good luck with whatever decision you make,

    Linda

    #54954
    LynnLuc
    Participant

    I am in a clinical trial for NED and I am stage 4. You can type in cancer.gov and go to clinical trials…then type in surgically resected and you will now find several trials for folks who are NED due to surgery. When I started my trial 2 years ago there was only one…. they can still stage you without an obviousl primary. Melanoma has no cure like some other cancers. I would hope you can get into a clinical trial using immunotherapy. I had radiation and Temodar first, then a thoracotomy…then the clinical trial with Anti PD-1. Hoping you have best outcome!- Lynn

    #54955
    LynnLuc
    Participant

    Of all the places you mentioned. Memorial Sloan Kettering is the one I personally would choose!

    #54956
    Catherine Poole
    Keymaster

    Your situation is not that rare, but it is at places that don’t see a lot of melanoma. And those places often suggest you go to all of those specialty doctors because they understand the difference between cutaneous melanoma (which is what you have most likely) and ocular and acral lentiginous the latter two being very rare and cutaneous being common. Melanoma is rarely hereditary, less than 4% of cases experts say. It is almost always caused by UV radiation from the sun or tanning lamps. I agree with Lynn, that Sloan Kettering is a top place among those you mention. Let us know how things go for you.

    #54957
    zephyr66
    Participant

    Hi… I’m sorry about your recent diagnosis. Just want to give my input for what it’s worth. Our oncologist said that IPI (Yervoy) is also the same drug they used previously to treat lung cancer. If that is the case, it seems that this might be a good route to follow or see if your oncologist agrees since they are confused as to whether it’s melanoma or lung cancer (if i understood your post correctly). Hope you keep getting information and advocate for what you feel is best for you. Keep us posted.

    Sylvia

    #54958
    buffcody
    Participant

    Just a first quick response at how much I appreciate what you have shared with me over the last 18 hours. Each one of the responses will be most valuable to me going forward. A clarification: the lung tumor has been definitely diagnosed (though by a non-specialist pathologist at this point) as a melanoma. I would say “melanoma metastisis,” but, since there is no primary, and though Catherine is undoubtedly right to say it usually metastisizes from the skin, there has been nothing definitive about whether it might be that very rare primary lung melanoma. More later. On to one more doctor’s appointment.

    Frank

    #54959
    buffcody
    Participant

    Hi Linda,

    From what you said about being Stage IV for 6 years and your comments on NED preventing many oncologists for using adjuvant therapy, I wondered if your situation was identical to mine in going into treatment with MUP. I appreciated your comment about needing to consult with different melanoma specialists in terms of whether surgery or chemotherapy was appropriate first. Everyone so far has said do the surgery ASAP, but I have not really spoken to any melanoma specialist yet. Sounds like from what you write that there might be a difference of opinion on that even on a case like mine with the cancer only in one location on the lung in a defined area as an encased tumor? Am I reading your response correctly? And congratulations on your 6 years!! I’d love to be writing anything on this forum 6 years from now.

    Frank

    #54960
    buffcody
    Participant

    Hi Lynn,

    If I am reading your post correctly, your situation was identical with mine, but your choice of treatment was some type of chemotherapy (don’t know if I am using that term correctly) and only then surgery. And I presume that was recommended by the melanoma specialists where you went. Why did they propose surgery only after the first line of treatment?

    Frank

    #54961
    dkmc
    Participant

    Frank, welcome to our forum. My husband Don had no primary though Lord knows they looked in just about every place (inside & out) to try & find it. This is a man with many moles who had skin checks with derm every year & many moles removed but none cancer. He presented with a lump in his neck which came back malignant melanoma. So he started at Stage 3(high risk-head & neck High LDH) after 3 neck dissections, Interferon, radiation ( no ipi at the time for stage 3 patients) 2 1/2 years later he became stage 4 with one tumor in his left lower lobe. My first thought was surgery. However our onco strongly suggested a systemic therapy as the thought is after it has “seeded”(mets) it probably will show up in another area at some time. With the new therapies available such as ipi, anti PD1 trials(if you can get in one) …she thought that was the better way to go. We were lucky… he went with IPI & is now NED. There are others who had surgery to remove a single lung tumor & years later are NED also. Do your homework…check for Braf & C Kit mutations, in a way it often feels like a crap shoot. You roll your dice & have plan B in the background. Don just could not stand the thought of another major surgery. He made the final decision. Turns out it was the right one. We feel very very lucky. Good luck, Karen

    #54962
    Anonymous
    Guest

    Frank:

    Welcome to this forum.

    CT/PET scan resolution is around 5mm. I’m sure your doc will order CT scans for the neck, chest, abdoman and pelvis as well as MRI for the brain to set up a good imaging base line. All of those scan should be done with contrast. Their resolutions will be around 2mm.

    If this is indeed the only site, (and I truly, truly hope so) I’m with the camp that would argue to get rid of it, either by direct surgical removal or radiation. I would then argue that you’re high risk for recurrence and get on IPI either prescribed as some insurance companies will allow that or as part of a trial for stage III or IV patients with resected disease.

    Jeff

    #54963
    buffcody
    Participant

    First treament meeting at U. of Michigan today. Oncologist recommends surgery but not rushing to it–five to six weeks out and watching in the meantime. Brain MRI and rectal check (not sure what exam that is) soon and, I presume, another imaging of lung area before going ahead with surgery. Point of not rushing is to see if anything develops in that woulthe nonce that would counterindicate surgery. For now, I am going to the Karmanos Institute in Detroit on Monday and, depending on the results of that meeting, perhaps to Sloane Kettering Manhattan as well. Still NED except for encapsulated tumor in right lower lung lobe. He has no idea how long it has been there. Could even be years in his estimation. I got a strong sense of optimism from him.

    #54964
    Catherine Poole
    Keymaster

    Good luck at Karmanos. I am still wondering about the rectal check you mentioned. Are they thinking this is mucosal? Has there been any pathology done to determine the type of melanoma? I see a lot of folks going through testing they may not need, such as linking ocular and mucosal melanoma to cutaneous. So I hope that isn’t what is going on here. Anyway, keep in touch and you are doing a great job of being your own expert!

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