Home Forums Melanoma Diagnosis: Stage IV Could this be stage 4 Melanoma?

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  • #21036
    NicholasChupp
    Participant

    Hey all,

    I have a few questions. I’m a 28 YOM, fair skin, freckles, blonde hair, great physical shape but have been blessed with horrible skin.

    In September of 2011 I went to the Dermatologist for a skin rash (psoriasis) and during the full body examination the Dermatologist discovered a disturbing mole (large, dark, multi-colored) on my mid back. The Dermatologist removed the mole that day and the test results came back as Melanoma. Imagine my surprise, I have never had a single health problem in my life and my family has no history of any skin cancers.

    Fortunately for me I have a fantastic Dermatologist who explained the Melanoma was very shallow (.2mm) and was able to remove the Melanoma with a wide excision.

    Now, fast forward 17 months and 11 other mole removals. My Primary Care took some blood work and noticed one of my liver enzymes (SGPT) was mildly elevated (60). This wasn’t a surprise since I drink alcohol, eat a lot of fatty foods and take Cholesterol medicine. Since I had Melanoma in the past she sent me to get a Ultra Sound of the Liver, gallbladder, pancreas and all the other goodies in the RU quadrant. Well the results came back with 3 lesions in my Liver, 7mm, 1.4cm and 1.4cm. So next on the list was a CAT scan followed by an MRI.

    Both the CAT Scan and MRI radiologists diagnosed the lesions as atypical hemangiomas. I then went to see a liver specialist (GI) who explained the lesions filled up with the contrast during the CAT and MRI scans. He took more blood work which came back completely normal and advised I do a follow up MRI in 3 months just to be safe. I then went to my Oncologist who also did more blood work and made note that my LDH levels, blood cell counts and liver functions were perfect. I then had a chest XRAY done to check for Lung lesions or swollen lymph nodes, also negative.

    Here is the problem I’m having. I experience no signs (no night sweats, headaches, itching, nausea, weight loss, weight gain etc) or symptoms of a recurrent Melanoma or even a secondary Melanoma. I have been looked over by 4 separate Dermatologists every 3 months for the last year and a half. I even had my Melanoma scar biopsied again for recurrence (negative).

    My Oncologist is pushing me to get a PET scan done. Now, I’m all for having a PET scan done if there is a high risk of cancer. All the tests I have had done have been extremely positive though. My blood work is good, my liver function is good, there are no moles or skin spots that appear to be a secondary melanoma, there is no recurrent melanoma on my first tumor area, no other lesions that I am aware of in my body and no swollen lymph nodes. I also would owe out approximately $10,000.00 for the test to be done with my insurance.

    I’m no Melanoma expert and for the most part I have stayed away from reading about it. I need advice now though from others who have experienced or have experience with Melanoma. Should I have this PET scan done? or should I wait another month and have the MRI done? am I reading too much into the positive signs? Are there other signs of advanced Melanoma I should know about? Should I be more concerned? I need some advice please.

    Thanks in advance!

    #59245
    Gilly
    Participant

    Sorry for your worries Nicholas – I cant really help but just wanted to say that many stage 4 metastases have no symptoms and if they are small – I think less than a cm – sometimes they dont show up on a PET – my husband has stage 4 mets both sub q and mediastinal but he still only has a MRI to check progress – here they feel that you should only do a PET to confirm a suspicion from the MRI – but I am sure everywhere has a different policy – scans are not exactly “good” for you so you should only have them when its necessary. All the best in your decision.

    #59246
    NicholasChupp
    Participant

    Thanks Gilly, that is the problem I’m running into. My Oncologist wants to do the PET scan “just to be safe”. She doesn’t suspect it will return as cancer since the Radiaologist made a diagnosis of Hemangioma and made no mention of any cancer suspicion.

    My GI and PC told me to pass on the PET scan due to the radiation and cost. They both pretty much explained that another MRI would offer as much information as a PET scan if the lesions grew any.

    None of the Doctors recommend a needle biopsy because Hemangiomas are a build up of blood vessels which can cause internal bleeding or bust during a needle biopsy.

    #59247
    cohanja
    Participant

    I think this is why they don’t typically do scans for early shallow lesions such as your .2. It’s very unlikely that melanoma would metastasize, not impossible but very unlikely. I had a .3 and when I insisted on chest xray which they weren’t doing, the doctor warned me over and over again about false positives and once we go down that road and they see something then they have to chase it. Well sure enough I had suspicious lesions show up on the chest xray so then I had to get CT scan which showed they were likely granulomas. I had another chest xray 3 months later just to confirm no growth/stable. Point is there are a lot of “things” that will show up on these images, such as hemangiomas, etc…. but if you do the scans and they see something, then it will lead to more scans/higher radiation, sometimes biopsies, etc. . . So I guess this is why they don’t scan Stage IA patients typically.

    #59248
    NicholasChupp
    Participant

    Yea, the Dermatologist who removed the Melanoma explained that the chance of the Melanoma spreading was less than 2%. I do like the percentage but anything less than 100% concerns me a little. I’m happy and positive since I have had no negative tests since I was diagnosed in September of 2011. The Melanoma mole was very obvious. They have removed 11 other moles since then but it was more of a precaution than anything.

    I’m not sure what I’ll do just yet. I’m already at 2 months since the last MRI so I guess waiting another month wouldn’t hurt anything since the PET scan is scheduled around that same time.

    #59249
    Anonymous
    Guest

    Nicholas:

    FWIW, the price of a PET scan via your insurance company should be no where near $10,000 (USD?) IMO. That might be the list price but most rates charged to insurance companies are steeply discounted. Also, there are quite a few stand alone scan services now in the US and they’re quite competitive and will discount service if you approach them, maybe even down to the insurance negotiated rate. Me thinks you can easily get it down to $5000, maybe even $2500-3000.

    Jeff

    #59250
    lizliz
    Participant

    cohanja wrote:
    I think this is why they don’t typically do scans for early shallow lesions such as your .2. It’s very unlikely that melanoma would metastasize, not impossible but very unlikely.

    Unfortunately…not really true, no disrespect intended. I had a .2 primary melanoma also. The doc said good, caught early. Six years later I had lung metastisis.

    You cannot predict when, where or why melanoma makes its move on you. I would get thee to a melanoma center of excellence for a second opinion.

    #59251
    NicholasChupp
    Participant

    Thanks Liz,

    Perhaps I should be safe and just do the PET scan. I have stayed away from reading about Melanoma because I can by a bit of a hypochondriac when it comes to my health. I have left my health in the hands of my Dermatologist for the most part. Do any of you know if there are any Melanoma centers around Atlanta, GA? or the closest ones?

    #59252
    cohanja
    Participant

    Lizliz:

    I’m sorry. Yes, I know it can happen. From everything I’ve read from Catherine, etc. . .it seems that it isn’t likely to happen, but it certainly could. What I don’t understand is 0.2mm is “micro-invasive” which I thought means radial growth phase which I thought means incapable of metastasizing; so, it’s stories like yours that always make me wonder how much is really known for certain about this? If someone with a 0.2mm lesion can progress, than this notion of “thin, low-risk, cured with WLE surgery” etc. . is bunk.

    #59253
    erinmay22
    Participant

    Sorry about your worries… as far as symptoms go – In Jan 2011 I had a scan show a dozen small nodules in both lungs. No symptoms. Most doctors would have had me wait 3 months and scan again. My doctor is aggressive and wanted a biopsy done (Had VAT’s procedure done) which confirmed Melanoma. Fortunately in 3 months all the other spots disappeared on their own. Had we not done a biopsy we would have thought I just had an infection…

    The point is you never know unless a biopsy is done (or different scans). Even though a pet can sometimes have false positives. I’d rather be overly cautious then miss something – but that’s just me.

    I went a year and 2 months being clear. I had started to feel run down and a scan May 2012 showed another met to my small intestine and the lymph nodes around. Go with your gut and remember that you are your best advocate! I feel like this intestine spot would have been caught earlier if I had pushed my doctors more since I had been feeling awful. I was feeling awful because my hemoglobin dropped to 5.6… yikes!

    Best of luck!

    Erin

    (http://www.melanomaandthecity.blogspot.com)

    #59254
    goldengirl2011
    Participant

    Nicholas,

    I went to Winship Cancer Center at Emory in Atlanta. I saw Dr. Washington. Hope all goes well for you!

    #59255
    NicholasChupp
    Participant

    goldengirl2011 wrote:

    Nicholas,

    I went to Winship Cancer Center at Emory in Atlanta. I saw Dr. Washington. Hope all goes well for you!

    Thanks, I had just looked them up prior to your post. I will likely seek a seond opinion from there and keep everyone informed.

    #59256
    Catherine Poole
    Keymaster

    My thoughts on some of the discussion here is that a thin melanoma is unlikely to spread or have the biological capacity to metastasize. But some pathologists aren’t that great at determining these things unless they have special training in dermatopathology and these are the cases where the “thin” melanoma metastasized.

    I would cut back on drinking since just one glass of wine a day increases a woman’s chance of breast cancer and who knows what it does for men (the industry keeps coming up with these stories about prevention of disease) and cut out the high fat diet. These are greater risk factors to your longevity than your melanoma from what you’ve indicated so far. You may want to have an expert look at your initial pathology slides again, just to be sure. PET scan seems like overkill.

    #59257
    NicholasChupp
    Participant

    Catherine Poole wrote:

    My thoughts on some of the discussion here is that a thin melanoma is unlikely to spread or have the biological capacity to metastasize. But some pathologists aren’t that great at determining these things unless they have special training in dermatopathology and these are the cases where the “thin” melanoma metastasized.

    I would cut back on drinking since just one glass of wine a day increases a woman’s chance of breast cancer and who knows what it does for men (the industry keeps coming up with these stories about prevention of disease) and cut out the high fat diet. These are greater risk factors to your longevity than your melanoma from what you’ve indicated so far. You may want to have an expert look at your initial pathology slides again, just to be sure. PET scan seems like overkill.

    Thank you,

    my Dermatologist’s are wonderful and very educated. The Oncologist who requested the PET scan I do not know much about since she is just a local Oncologist. I have only visited her once. I’m going to play this safe and seek an opinion from a Melanoma Center of Excellence. Luckily I have one very local to me. Yes, I have cut off alcohol completely. I’m working on the diet but that a a complete life style change so it will take time. I’m not overweight or out of shape, 6’0 200 lbs, I just have a very active metabolism that allowed me to eat fatty and junk foods without adding on the extra pounds. Plus I work out regularly.

    #59258
    cohanja
    Participant

    It’s hard to believe there are so many pathology mistakes in determining Breslow. I’m sure there are some mistakes, humans make mistakes. But, that many to make up the majority of the % of thin lesions that metastasize? That is hard to believe, but scary if true.

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