Unusual Diagnosis

fedfan
fedfan Member Posts: 44
Unusual Diagnosis

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  • fedfan
    fedfan Member Posts: 44
    edited November 2011

    I've had some small flesh colored lesions on my left breast for several months. They have the texture of scar tissue. The first one appeared right next to a biopsy scar from 9 years ago. I wondered if scar tissue could spread. I had a mammogram in July which came back normal. My GP suggested I have my dermatologist look at the places on my breast. My dermatologist did a punch biopsy on one of the lesions. A week later she was stunned by the lab report: breast cancer. I have since been to Moffitt Cancer Center. A closer examiation of the original specimen showed that it was ILC; however, they have been unable to find anything actually in the breast. I have had two ultrasounds and an MRI. Still nothing. Today I had  a PEM. This is a very new device. There are only a few in my state and only one in my city. I was very fortunate to have access to one. If there is anything there the PEM will find it. It has been over a month since my original diagnosis and I still don't know what I am facing. The whole thing has been such a mystery. Has anyone had experience with ILC being diagnosed on the outside of the breast but then difficulty finding it inside the breast?

  • ma111
    ma111 Member Posts: 1,376
    edited November 2011

    Mine was found in my nodes and they could not find anything in the breast. pet/ct showed nodes a lot of different places, but nothing in the breast. Had MRIs, 2 mammogram etc. They even thought that it was a lymphoma until the bx of the nodes. It came back breast cancer. Did chemo, axillary clearance, radiation and a year of Herceptin. Then 8 months later a rash appeared with skin changes and skin punch showed IBC.

    Have they done any CT's or something? I am glad that it is confined to the breast. I found mine when I was shaving. Had a soft area of swelling in the armpit. You are at a good cancer center. If they think it could be else where they will run the pet/ct. I am thinking that yours might be confined to that one spot.

  • Loveshermother
    Loveshermother Member Posts: 101
    edited November 2011

    My mother has started with some kind of leisons too.. It started a little over a weekago. The difference is that its not on her bc side. Its on her right side. I found one small one on her left side on her chest. I didnt look under her arm but some were on her back shoulder blade too. She see her gyn on thursday and I told her to have him take a look at them. Now Im a little worried. Is there anything we should be looking for if these are anything to be concerned about?

    Penny

  • fedfan
    fedfan Member Posts: 44
    edited November 2011

    The PEM scan is like a PET scan only it is specifically for the breast area. It is very new but very exciting technology in the diagnosis of cancers in the breast. I had it done yesterday, and the best way I would describe it would be like "mammogram meets pet scan." I am very hopeful that this will finally give my doctors and me the answers we've been looking for.  

  • fedfan
    fedfan Member Posts: 44
    edited November 2011

    I would suggest to anyone reading this that if you see anything new on your skin particularly the skin of your breast, go immediately to your dermatologist. Have them biopsy it. I know as we age all sorts of weird things start appearing on our skin. These things on my breasts just seemed like another weird sign of aging. Also no one that saw the lesions (two GP's and the technician that did my annual mammogram) seemed too alarmed about them. They just told me to have my dermatologist look at them, which I wish I had done right away. Thinking these were no big deal, I waited until my annual dermatologist check-up. I wish I had gone in right away instead of waiting several months, almost a year. That was stupid, but I just didn't know. My deramtologist was as shocked as I was when she received the lab report saying it was breast cancer. She told me that in 27 years she had never seen anything like it. So please, if you see anything strange on your skin, particularly your breasts, get to a dermatologist right away. Get them to biopsy whatever it is. A punch biopsy is very simple and it could alert you to a hidden danger inside your breast.

  • J9W
    J9W Member Posts: 395
    edited November 2011

    One of the ladies who used to post in the DCIS forum also found a recurrence. She went to her dermatologist for a rash that wouldn't go away and lo and behold, cancer had returned on the skin! I never would have thought that a rash could be an indication - especially since I'm 'rash girl' anyway. Last winter I got 4 weird rashes - and of course didn't go to the dermatologist and instead saw someone from Patient's First (different doc each time). Should any rash appear in the future, I'll be in the dermo docs office pronto.  Wow. this C is some sneaky stuff.

  • ma111
    ma111 Member Posts: 1,376
    edited November 2011

    In my area it takes 3 months to get in to see a derm. your family dotor can also do a skin punch bx. Your medical onc is also a good resource.

  • Loveshermother
    Loveshermother Member Posts: 101
    edited November 2011

    same here... Its a 3 to 6 month wait. Even when you tell them that she has had bc. Im glad that she is seeing her gyn today and hopefully he will take a look at them for her. I was asking her last night how the spots were doing (as in spreading or going away) and she was like they are still there, but they dont hurt of itch. Really not sure what she should be looking for so hopefully we will get some answers today.

    Penny

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