Home Forums Melanoma Diagnosis: Stages I &II Okay to wait or should I be seen immediately ?

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  • #21021
    BaylorBear
    Participant

    Hi Everyone!

    I have been reading the forum for a while now, and I decided to join so I could get your opinion on something and to hopefully support others with their melanoma journeys.

    I was diagnosed with stage 1A melanoma in May 2012. I had a new, pink mole suddenly appear on my left forearm that turned out to be melanoma. I had surgery in June at MDA. I just had my six month appt. at MDA at the end of January and they said that my skin looked great and my chest x-ray came back clear.

    Last week I noticed that a small mole on my right thigh looked like it had a black spot in it. I took a picture of it and called my dermatologist to schedule an appt. to have it biopsied. I am going to that appt. on Friday, 2/15.

    I took another picture of it 5 days after the first picture and there is a noticeable difference between the two pictures. I showed my mother in law and my sister to confirm that they could see a difference in the mole in the two pictures, and they both agreed that it had changed in the last five days. I wanted to get their opinions to make sure that I wasn’t imagining things!

    Should I call tomorrow (Wednesday) and insist that they see me immediately or is it okay to wait until Friday? I know that my appt. is only two days away, but waiting two more days when it’s changed so much in the past five days makes me even more nervous. Thanks for your help!

    #59152
    cohanja
    Participant

    Sorry I don’t have an answer to your question, but I find it interesting that even at 1A 0.3 mm, MDA is performing chest xrays on you. I’ve been told a hundred times by doctors and on this forum that for an early thin melanoma like that, scans are not performed; yet, at one of the top melanoma centers of excellence, they are doing chest xrays for you. I think they know what they’re doing, so I guess chest xrays should be done after all even with an early Stage IA.

    #59153
    Catherine Poole
    Keymaster

    I was surprized to see chest xrays are being done as well, but some centers are still stuck in old protocals that have been proven not useful.

    If you can get an appt. sooner to relieve your mind, I would push for it. It is really hard to get these derm appts. I know so it may not be feasible. Normally, melanoma doesn’t grow that fast. But having amelanotic is on the rare side too. Go for it and let us know if they will see you sooner.

    #59154
    cohanja
    Participant

    Ya, but how could MD Anderson be stuck in old protocols, they are among the top best melanoma center?

    #59155
    BaylorBear
    Participant

    Thanks for the replies, Cohanja and Catherine!

    I called my dermatologist this morning, and they worked me in today, so the biopsy is done and being sent to pathology. Hopefully it’s nothing! I feel much better knowing that it is off and being tested.

    I told my doctor at MDA that I understood that if you have to have melanoma, that stage 1 is the best place to be, but I also know how sneaky melanoma can be. I asked why they don’t do full body scans at least once every year or two even for Stage 1 patients, and he said that if I were to experience more problems with my original melanoma that it would probably show up close to the place of the first one, or in the closest lymph nodes, or in the lungs. He said that by doing skin checks, feeling the lymph nodes, and doing a chest x-ray every six months that covers the most likely scenarios of a recurrence. He did say to pay close attention to any strange symptoms that suddenly develop, because that could indicate that there is a problem and then they would order the appropriate scans, etc. to check it out. Between going to MDA and my local dermatologist, I am seen every 3 months, and I feel comfortable with that.

    So, long story short, I guess that’s why they still do the chest x-rays. Even if it’s outdated, it gives me more peace of mind. I’m scheduled for another one at the end of July.

    Thanks again for the responses! I will keep y’all updated when I receive the pathology report.

    #59156
    cohanja
    Participant

    In terms of full body scans, that would be an awful lot of radiation exposure, probably unnecessarily. X-rays are not that much radiation compared to CT. I wonder why it would probably show up in lungs, as opposed to liver or brain, etc. . I thought it could go anywhere. I had always heard that scans don’t show microscopic disease anyway, and by the time the patient would be in with symptoms anyway is when the scan would show something. Did he say for how long you should do chest xrays every 6 months? I also thought it’s been said on this forum that for a 0.3 mm (without extensive regression), it’s biologically almost impossible for it to spread. But, I’ve also read about cases where that did happen, so. . . & then there are the other factors like being male and trunk location, both of which are me, even with a thin Breslow

    #59157
    BaylorBear
    Participant

    Hi Cohanja,

    I think that you are definitely correct about the amount of radiation exposure that would come with doing full-body scans. I’m sure that they want to minimize that. Like you, I also read that scans don’t show microscopic disease, so that is probably another reason why they don’t do them, unless someone had other symptoms.

    I *think* that I am supposed to have a chest x-ray every six months for the first two or three years, and then once a year until the five year mark, and then I’m not sure about after that. I know that we asked about it back in May, but with everything that we were trying to take in, I’m not absolutely positive about that timeline.

    So I guess it’s unusual to do the chest x-rays for Stage 1? I’m sure that the follow-up care varies from doctor to doctor…

    #59158
    cohanja
    Participant

    i don’t know for all Stage I’s, but certainly with a Breslow of 0.3 mm I think it’s unusual, maybe just erring way on the side of caution with very minimal radiation from just xrays every 6 months

    #59159
    Catherine Poole
    Keymaster

    My oncologist told me if something showed in a chest xray it would have to be rather large so it would be symptomatic a lot earlier. Yes, MDA still prescribes interferon too, so there are outdated protocals in even the most “esteemed” centers. All depends on the leadership and connections. What we worry about (some more than others!) is microscopic disease and we’ve yet to find anything that detect that. The closest thing we have is swollen nodes which may indicate early disease that the nodes “swallowed” up to prevent the body from getting. You have to do what you feel best about doing for follow up.

    #59160
    krissy424
    Participant

    FYI -60 year old female. Melanoma on upper back. Removed 6/15/12.

    Wide excision done, clean. Breslow .55 Clark II. Radial growth phase.

    No xrays, scans or lymph node surgeries done.

    Skin checks every six months.

    best of luck to you.

    Kris

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