Home Forums Melanoma Diagnosis: Stage IV Curveball Prior to Surgery

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  • #20468
    buffcody
    Participant

    As reported a couple of weeks ago, I have a single known metastasis to the lung, MUP. Surgery has been moved up and is scheduled for a week from today. A recent MRI found no further evidence of disease. An ambiguous (to me and my local oncologist maybe not to a melanoma expert) brain MRI report mentions “a .5 cm region of old blood product in the medial left parietal lobe with suggestion of peripheral rim enhancement. Findings raise the possibility of hemorrhagic intercranial metastatic disease.” A recheck is called for in four to six weeks. I’ve been trying to get hold of my melanoma expert oncologist about this to no avail. The local oncologist says, “Go ahead to surgery and don’t jump to any conclusions.” But I wonder if this is more definitive in reality but just sounds ambiguous because of the tech-speak involved. Anyone know what this means more definitively? Any reason for not going ahead to the operation, which I am told I will recover from in two weeks? The local oncologist asked me if I had hit my head lately. I did. Very hard. About three weeks ago. But I’m sceptical about a lot of things these days. And sceptical I guess about anything that walks like melanoma and quacks like melanoma not being such.

    Frank

    #55428
    justinnv
    Participant

    First, absolutely try not to panic and jump to conclusions. But don’t even think about going ahead with the surgery without making sure about something possible in the brain. When the disease metastasizes to the brain, that can mean a lot about the disease which informs decisions about what treatment course to pursue, especially surgery. The brain takes precedence for one thing. And for two, General surgery is a big deal and can do things like knock down your immune system for a while, which is what is fighting your cancer.

    You are absolutely right, you have to talk about this with a melanoma expert. And something like this (which could very well be nothing at all) definitely begs for a 2nd opinion. From not just a melanoma expert oncologist, but a whole team, like at a major melanoma center. Because the radiologist will be a big part of that, and it should be one who works with that melanoma team.

    #55429
    Catherine Poole
    Keymaster

    I thought you were contemplating that third opinion at Sloan Kettering? Now is the time for that in my opinion. This brain showing does sound related to the injury you had but please have an experienced melanoma team review your records. Feel free to call me if you’d like to talk this over. You are right to not take this lightly but I also can tell you there are many occaisions where you will get conflicting reports until you get an expert handling your case.

    #55430
    buffcody
    Participant

    Thank you so much, Catherine, for the most helpful conversation. I picked up from that that I had been less than clear in my first post. I still have the metastatic melanoma tumor on my lung. It was a Pet Scan not an MRI that showed me NED until this brain MRI showed up to question it. The “experts” at the Barbara Karmanos Cancer Center in Detroit told me this afternoon that the radiologist report from the MRI is typical of what they have seen in their experience of reports of a single metastisis to the brain, but they will not be definitive until they look at the CD I sent them today of the entire MRI. I should know their and the University of Michigan’s judgment on Monday. Karmanos believes that a gamma knife removal will probably be the way to go. I am not sure what this means for any surgery to remove the lung tumor, if they are further convinced of a brain metastisis.

    #55431
    Catherine Poole
    Keymaster

    So the curveball may require a switch to Karmanos where they can do the gamma knife. Lots of patients here have been through this procedure. You might want to watch our webinar (you can click on them above) that talks a bit about brain radiation, it is quite good.. But waiting for the definitive on Monday I know will make this weekend a bit tense for you and wife. Let us know what you find out on Monday.

    #55432
    buffcody
    Participant

    I received a boat load of conflicting advice over the last week and finally decided to go ahead with the surgery to remove the lung tumor through a miminally invasive lobectomy. Tumor was golf ball size. No signs of anything else on the lung. I’m in a bit of pain today and wallking the hospital corridors is a lot harder than I would have ever thought, but all is well. Should be home by Sunday and on to Sloane-Kettering for a consult as soon as I can get on a plane (should be soon; they say I can be back in the pool in two weeks).

    The pathology team (?) at U. of Michigan believes that what was suspected as a melanoma by my local pathologis (Kalamazoo, Mi) on the brain is a cavernoma. Not sure I believe that. Recommendation for another brain MRi in four weeks. Wonder if I should try to move that up. Last MRI was a week ago Monday. Well, based on the optimistic surmise and a recent full-body pet scan, I am NED.

    The surgeon, this morning, raised again the perennial question of whether the tumor is primary to the lung since I am MUP. I said to him that I had never gotten any sense that this was a critical issue for future treatment considerations, but he commented that it might be a factor in choosing between any kind of additional therapy instead of wait and watch. There seems to be a literature that identifies primary to the lung with a particular shape and location of the tumor, but this does not seem to be a very important literature…maybe because the subject is too arcane or the condition too rare or the implications for treatment too speculative.

    #55433
    Catherine Poole
    Keymaster

    Glad to hear you are up and kicking down the halls! The pathology from the tumor they removed should clearly indicate whether it is melanoma (a metastasis from an unknown primary) or lung cancer. Have all pathology reports sent to Sloane and slides of the tumor as well to make sure you get solid opinions on this. Rest up and take good care.

    #55434
    erinmay22
    Participant

    Sorry to hear of the curve ball and all the conflicting information. As if this dealing with Melanoma isn’t bad enough – you get all this extra stuff to worry about.

    Best of luck at Sloan. I am a patient there. And as far as flying after lung surgery – I had a VAT’s procedure done in March 2011 and was flying 2 or 3 weeks later. Don’t remember exactly. Their only advice was not to lift anything over 10 lbs.

    Do you know who you’ll be seeing yet at Sloan?

    Thoughts and prayers your way!

    Erin

    #55435
    buffcody
    Participant

    Catherine,

    There has not been a question since the first biopsy about whether or not the tumor on the lung is melanoma and not lung cancer. It is melanoma. The question that keeps coming up, though I suspect more among doctors who are not on the cutting edge of melanoma research, is whether or not a lung melanoma could be primary, and that mine might be a primary melanoma to the lung.

    Frank

    #55436
    Catherine Poole
    Keymaster

    Nope, melanoma doesn’t work that way, unless it was mucosal melanoma and then the lung is not considered a mucous membrane. So the primary was on your skin somewhere, most likely regressed back into the body and traveled the blood stream to set up camp in your lung. Yes, I think you will find very knowledgeable people at Sloan Kettering and there shouldn’t be any mysteries about the disease or avenues to combat it.

    #55437
    buffcody
    Participant

    Doing quite well three weeks out from surgery. I’ve been able to get back to my almost daily three miles of “hill walking” that I was doing prior to the loss of my lower right lobe. A second brain MRI was done this past Sunday and showed no development of any met there. That coupled with the June no cancer PET scan and the same from the lung and nearby lymph node biopsy places me as NED with a PET and brain MRI scheduled for early October. Must admit feeling awful good about this state of affairs after the eactly three rocky months leading up to today.

    #55438
    Catherine Poole
    Keymaster

    So good to hear from you! Sounds like a great progress report. Were you still going for another opinion on your brain mri etc at Sloan? That certainly was confusing. Sounds like you are in great physical shape, keep up the good work.

    #55439
    lizliz
    Participant

    Congratulations on your NED status! What a nice recovery in 3 weeks time already hill walking. Very inspiring. Like you, I had 1 lung metastisis to the lung. In my case, I lost the upper left lobe of my lung. I have been NED for over 3 years now and running a half marathon this fall! We have definately been blessed by a miracle!

    #55440
    buffcody
    Participant

    Catherine notes the confusion prior to my surgery. It had to do with the first MRI. The original read was done locally and spotted a “maybe” melanoma brain met. I then sent the slides on to U. of Michigan, which I was working with as primary, and Karmanos in Detroit as second opinion. While waiting for more definitive judgments from the experts at both places, the surgery was moved up, something I had been advised was important if I could possibly do so lest the melanoma spread more. U. of M’s second read of my MRI leaned more to the view that it was not a melanoma. The slide shipment got lost somehow for a few days at Karmanos, so I never was able to get their take on it before having to make a decision to have surgery or not. So I decided to go ahead with surgery right away and not put things off for a number of weeks more with a “third opinion” at Sloan.

    The second brain MRI was done at U. of M. four weeks after the first one had been done here in Kalamazoo, a couple of weeks after the lung surgery. They found even less indication of anything melanomic on this one. The suspicious area that they felt was probably a benign cavernoma on the first one had become even more difficult to see on this second MRI and was in no way definitive of anything. However, the oncologist did say that when it comes to melanoma and its manifestations, we are not talking about 100% certainties.

    He spoke of the possibility, if I were “highly motivated” to do so, of beginning adjuvant therapy, probably with Yervoy and that he would arrange for that. HIs recommendation, though, was what I am going to do–wait and watch with the follow up PET and brain MRI in two months. He also said that if anything is found in the future (and unfortunately that is probable but not certain as I think we all know), treatment can start immediately. He works with patients who have presented as I have and are NED a number of years out. He hopes I wiil be another. So do I. So I agree wholeheartedly with LIzLiz and am grateful for the miracle I am experiencing right now.

    #55441
    Catherine Poole
    Keymaster

    So in my humble opinion, I would have the brain scans sent to Sloan for the second opinion. It is worrisome that they first said you had a brain met and then said you didn’t. It should be clear whether it is or isn’t. I would feel better knowing an expert outside of there verifies this. If there is something there, you want to catch it early and zap it with gamma knife.

    I hope you continue to feel great and get back to your swimming too!

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