dfsp -- should I be talking to onco?

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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

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  • Mulligan45
    Mulligan45 Member Posts: 6 Member
    #2
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    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
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    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
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    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.

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