Home Forums Melanoma Diagnosis: Stages I &II What did your recurrence look/feel like?

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  • #21741
    kab07011
    Participant

    Hi everyone!

    It has been awhile since I have been active at all on this board. I had a .97 ulcerated mel removed from my lower back/upper buttocks region in 10/09. SNB negative in groin.

    I have since had 2 children and my youngest is now 8 months old. I am 34 and live in Erie, PA. Before I go on my disclaimer is I do carry her constantly (high maintenance) on that same right side.

    In the beginning of Dec I began to get occasional back aches. Christmas Day for about 3-4 days it hurt so bad no position could make it better, I have never felt this bad of back pain. I also had weird bruising on thigh and lower back area with no known injury. I woke up from sleep over it and I nurse the baby throughout the night so I do change positions frequently. I went to the doctor and she just did a quick xray, which was fine. She also did blood work, which came back with low iron, so I started iron. Then she adjusted my back and said my hips were very out of whack. So then the next 4-5 days I had terrible itching pain in all throughout that side of my back and WLE and thigh on that side that kind of radiated to my groin where the lymph node was removed. Dull back aches continued, not so severe now. So then the itching stopped and I am getting a burning sensation throughout my lower back to my upper thigh on that side, sometimes shooting over to my lymph groin basin. About 4 days ago I broke out in a small rash, very small pimple things above WLE and kind of throughout. I prayed it was SHINGLES so I went to the derm and he said no, it was too small to be shingles, but wants me to get a PET scan to be sure.

    My questions are if you were originally stage 1B what did your recurrence feel like to you or even look like? Does this sound like a mel recurrence? Could this be some type of nerve pain from my body recovering from baby carrying this far out from surgery? 4 years later?

    I do not want a PET scan because of the radioactive stuff they use in your body and since I am nursing a baby and have several small children this would affect that for a day at least. Plus I am a fan of least invasive testing.

    So is there something other than a PET or MRI that could be done initially just to “see” anything, like a sonogram I could ask the doctor about for that area?

    Please give me any advise or thoughts on this. I am driving myself insane with the what ifs.

    Have a great night!

    #63337
    Catherine Poole
    Keymaster

    This could be an issue with your sciatica nerve and no one is sure what causes that, but certainly stress and certain activities can cause it. However, you should get checked at a center of excellence which is a distance from Erie. Is Pittsburgh nearby? UPMC would be good. Otherwise, near State College is the highly regarded Geisinger system. Or come down to UPENN in Philadelphia. I hope this helps you. I would think a CAT scan would clear it up and that doesn’t require radioactive material.

    #63338
    kab07011
    Participant

    Thanks for the advice. I planned to stay here in Erie for the scan and then if it is something be seen, again, at the Hillman Cancer Center, where I was seen previously. It is about 2.5 hours away. I saw Dr. Tarhini. The burning pain in my thigh is not down the back but in the top front and side, also sometimes going to my groin area where the lymph nodes were removed for SNB. Is it possible nerve pain this far out? (4 years)

    I will request a CT scan, but it is a lot of radiation..but also will not effect nursing the baby. Is the CT scan effective in recognizing repeat melanoma, small or large? I am going to wait another week and see how I feel.

    #63339
    Catherine Poole
    Keymaster

    Yes, CT scans are very good and often recommended. I also saw that UPMC has a hospital in Erie, http://www.upmc.com/locations/hospitals/hamot/pages/default.aspx?article=243

    Maybe check that out. I wouldn’t put it off, you need to be out of pain and find out what is going on.. let us know how you are doing.

    #63340
    kab07011
    Participant

    Well I called my derm today and he told me he would not order the CT scan only since it does not detect very small in transit tumors, but recommends just the PET scan. So I am going to see the oncologist in Erie on Feb 3 to discuss other screening options (maybe sono/if he will order a CT ?)

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