dfsp -- should I be talking to onco?

ashrough
ashrough Member Posts: 1 Member
edited November 2023 in Skin Cancer #1

Hello. I'm 21 (F) and I was diagnosed with DFSP in August 2023.

I had a growth just under my left breast for about 2.5 years. It was not until it drastically grew in size that I was referred to general surgery. In gen surgery, they tried to biopsy me thinking it was a cyst, only to find out it was a tumor. I then had the tumor fully taken out and was able to have negative margins without radiation/chemo.

Now here's what I'm worried about. It was only through my surgeon that I was able to hear that (1) I had cancer, and (2) had negative margins and have "nothing to worry about". I haven't talked directly to someone specializing in oncology or have more specific knowledge about DFSP in my journey.

If I didn't need chemo or radiation, would it be excessive/unnecessary that I try talking to someone more specialized? In addition, should I be arranging regular annual meetings?

navigating the health system alone has been overall really difficult and I would really like some advice! Thank you so much

Comments

  • Mulligan45
    Mulligan45 Member Posts: 6 Member
    #2

    Sorry to hear this. I’m 20+ years older than you but just have had 3 small nonmelanoma spots show up this past year. I completely understand the anxiety and concerns you have. No real solutions of course but just wanted to say good luck.

  • Mulligan45
    Mulligan45 Member Posts: 6 Member
    #3

    Sorry just read your 2nd part. I would say if it helps give you piece of mind I would contact someone to talk about these concerns.

  • ske1
    ske1 Member Posts: 1 Member
    #4

    Hi! I'm 68 and I've had what I thought was a cyst for decades. Nope, I just found out it is dfsp. My dermatologist will set me up with an oncologist next week. I've just read a lot on DFSP and it looks to me like you're in the clear. But a chat with an onco might make you feel better. Regular check-up and disclosure to DRs makes sense tho. Me, on the other hand......it's going to be a long road that ends no where good.

  • maforrest
    maforrest Member Posts: 1 Member
    #5

    I hope you went to an oncologist ... I had advanced scc skin cancer in suprapubic area. Dermatologist referred me for MOHS surgery at Derm clinic but day of surgery, surgeon said it was too large for MOHS. He excised and sent off and results showed clear margins. Nope. 1 year later, right groin lymphadenopathy and biopsy revealed metastatic cancer. PET then revealed stage 4 to include right sacral ala (bone) cancer. I should have gone to an oncologist/cancer center for initial treatment once the derm confirmed SCC. Oncologist would have biopsied the regional lymph nodes given the location and size of the cutaneous area. I hope you went to an oncologist.

  • apetry
    apetry Member Posts: 3 *
    #6

    With DFSP the standard of care is surgery to excise the tumor and make sure there are wide, clear margins. Since it's extremely rare for DFSP to metastasize, it's fine if a dermatologist is your treating physician. In my case both my dermatologist and plastic surgeon wanted wide clear margins, so they removed the tumor until they had clear margins, then they took just a little more normal skin that surrounded the DFSP. It's been five years since I had it removed and I'm doing great today. I see a dermatologist at a large, local hospital who specializes in rare skin cancers such as DFSP for a yearly checkup.

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