Melanoma Moments

I posted this question on the MPIP board, and wanted to drop the responses here (anonymously, of course) so I can find this all again easily, and for anyone else who might have the same question. After reading these responses, I will definitely revisit with the doc should the need arise.

My question:
As I anxiously await the results of my SNB (should get them right around Christmas, oh joy), I’ve been doing some reading, which is raising some questions.

It seems like most people whose melanomas have gone to lymph nodes get various scans to see if it’s gone elsewhere.

In brief discussion (we don’t need to go there yet, we both said), my surgeon said that he doesn’t do any scans, because the incidence of false positives is higher than the incidence of true positives and all it does is cause unnecessary anxiety. He said it makes no difference in mortality if you just wait until you have a cough that doesn’t go away, etc., to find out if it has metastasized.

Is this standard practice, or something I should get a second opinion about should my path. results show lymph node involvement?

He also said that the only treatment is lymph node dissection, which can be followed by interferon or nothing. No other options. Again, we didn’t go into detail, but aren’t there other options that we should at least discuss, should we need to go there?

I do like and trust my doc, but it seems like the world of melanoma treatment is broader than that. Or maybe not?

 Answers:

When your doctor said there are no other treatments for stage III except interferon he was definitely wrong. There are clinical trials and also some people do gm-csf (leukine). However interferon is the only FDA approved treatment for stage III and maybe that’s what he was talking about. Also, clinical trials are just that – a trial with a treatment that is unknown at this time so nobody knows if it will work or not.

There are a few major melanoma centers who do no scans after stage III unless you have symptoms and I go to one of them. I’m stage IIIC, did interferon in 2001/2002 and have had no scans and I’m NED over 6 years now. I had a HUGE problem with this policy in the beginning but I’m fine with it now. I also find it amazing at how many people I see there who are also stage III who’ve beaten some large odds to still be NED years later. Having said that – we’ve also seen people on this board where a scan has saved their life. If you are uncomfortable with this policy then you’ll need to switch doctors. I will say that I am probably more stress free than most and I think it’s due to not having scans as reminders about “this”. Good luck to you. There’s no right or wrong.

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I am NOT a Dr. and NOT an expert, but I believe if you wait until you have a cough it maybe too late. I had lymph node involvement in 2004(surgery and radition) and then into a clinical trial, BUT I had CT, MRI and some PET scans all along during the last 3 years. CT in Nov. showed tumors, PET and path reports confirm mel’s return. I have no other signs of mel, but at least now I am starting treatments because the scans found it. If he says interferon is the only treatment and nothing else, he may mean interferon is the only FDA approved treatment, but there are many, many clinical trails out there that can give you other options. Check www.clinicaltrial.gov or some of the cancer websites. False positives are a concern with some scans (PET), but no scans is a major mistake – I think. You want to find it and try to get it stopped ASAP. My 2-cents worth.

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[X] was treated at [a place that] had this same policy of no scans unless there were symptoms BUT they did do scans when he was first diagnosed just to make sure the MM was just in the one lymph node.

I think you would feel better if you at least had a baseline scan in the beginning. Sometimes if you share your concern with the doctor and ask him to do baseline scans just to put your mind at ease he may be fine with doing that.

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I disagree with your doctor’s approach. If I waited until I started coughing from my lung met, I don’t think I’d be typing this response 10 years later.

Also, there ARE other options after surgery for lymph node involvement. I did a combination of interferon and an experimental vaccine. I also know some people who did interleukin after lymph node involvement. I had 3 month scans when I was in clinical trials and did not have one false positive. Nor have I had false positives since that time and I get scans once per year, even now.

I would get in to see someone else who is a little more aggressive, if I were you.

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I went from Stage I to Stage IV, so I don’t have any direct experience with Stage III disease. Having said that, when I was diagnosed with Stage IV I was told that my chances of successful treatment were increased because it was an early metastisis, mostly soft tissue with two very small nodules in my lungs and a resectable tumor in my breast. I had no symptoms.

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There is more to tx than IFN or nothing. I had stage III Clarks 4 and after one postive node in SNB decided to do the vaccine trial at NIH. Cancer free for 9 months tomorrow! (Merry Christmas to me!)I LOVE it there and they do CT scans to make sure there are no mets. I decided against IFn due tot he side effects and I wanted to have fun and enjoy llfe! Also, I encourage you to read all the literature about IFN specifically teh studies so you feel informed when you make your decision about tx.

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When I was dx in Mar ’06, I had CT scan, bone scan, x-ray, ultrasound, endometrial biopsy, bloodwork, eye exam — you name it, I had it, except for a PET scan. I wanted a PET, but was refused because WLE and SNB wer both neg. However, by New Years, I had a recurrence, and 2 subsequent WLEs came back with positive margins. Finally they sent me for a PET and discovered another tumor further up my leg, which set me up for a whole new type of treatment.

My point is that scans are, in my opinion, crucial to early detection. So what if you get a false positive? Further investigation will determine if something is benign. Also, I disagree with your doctor on the high instances of false positives. They happen, but not as frequently as he is leading you to believe. I’d much rather be subjected to a few weeks of waiting anxiety, than to be told I’m too far gone. Melanoma is a most insidious disease, and if you wait for symptoms, it may be too late. If I had not had my PET scan, I would have never known about the new tumor, because it was too deep to feel by touching.

Anyway, now I get a CT scan every 3 mos, and a PET every 6 mos. I think scans are a necessary part of follow-up, especially with high-risk patients. But that’s only MY opinion.

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Hi Sue.. if it were me, I’d at least ask for “baseline” scans (CT, MRI, PET, Chest X-ray). I’m stage 2b, NED 7 years now, and I still have scans every 6 months. (PET/CT every 6 months; CT, Brain MRI and Chest x-ray once a year).

My onc. would probably be comfortable with no scans until symptoms at this point, but I wouldn’t, so as long as I have good insurance, I have scans. They’ve shown a couple of false positives. Last year, they showed a tumor which had grown to over an inch in 6 months in the right lobe of my thyroid. (Confirmed by sonogram and MRI and thyroid test). We were all prepared for thyroid cancer, but Praise God it was benign!

I think it’s totally your choice, but I’m one who opts for scans since my melanoma was so deep (Breslow 2.25mm, ulcerated). I was offered interferon, and did 8 weeks, before the side effects stopped me.

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I had scans after my lymph node surgery and my 6 month scan showed small met to the lung. We were able to remove it immediately whilst it was small and only singular. I would hate to think how my lungs would look now if I was waiting for symptoms.

Yes, scan times increase anxiety but I want to be on to treatment as fast as it is needed.

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I am a big believer in scans, I was staged at 1B this June. No scans are routinely ordered at 1b

I fought for a CT of the chest..Onc said no, family doc finally agreed after I showed her some research …a small nodule showed up. We are now watching for changes, and will biopsy as soon as it is large enough.

If this turns out to be MM then it is ONLY because I insisted on scans that I believe I will have a fighting chance with this aggressive disease.

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I started out stage IIIc with melanoma in my lymph nodes and had CT Scans, MRIs, and PETs. A very big option is a clinical trial but first you need to know where the cancer is. I had scans as Stage III and ended up they caught that it had gone to Stage IV before I felt it. If I had waited for symptoms I could be dead now. Please see about a place that specialist in melanoma and clinical trials etc.. Ask here for recommendations of places near where you live.

I know it is easier said than done, but I wouldn’t get ahead of myself yet. Hopefully your SNB will be negative. But,if it is positive then I would definitely be getting a second opinion. I don’t think I would feel very comfortable with your doctor. If you have to make a treatment decision, then I would get other opinions before I made it.

Also, FYI–some melanoma specialists and major mel centers do not do scans unless there are symptons.