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Borderline Phyllodes Tumor Diagnosis at 22

Hi everyone,

I'm a 22-year-old dealing with a recent diagnosis of a borderline phyllodes tumor, and I could use some guidance and support.

On 11/10, I noticed a tumor, leading to a biopsy on 11/14. The biopsy results were inconclusive, and a lumpectomy on 12/6 revealed a borderline phyllodes tumor with negative margins.

I've been struggling with this diagnosis, considering my age and the borderline nature of the tumor. While I never wished for cancer, I find it challenging to explain to others and feel a bit invalidated when people say, "at least it isn't cancer." I almost wish it was cancer because it would be easier to communicate, and people tend to be more sympathetic. My doctor is opting for a re-excision to get larger margins without adjuvant radiation, with the possibility of radiation if the tumor returns.

Any insights or advice on dealing with a borderline phyllodes tumor would be incredibly appreciated during this challenging time. 💕

Comments

  • needs.a.nap
    needs.a.nap Member Posts: 117

    Hello @phyllodesat22. I wanted to post right away but genuinely didn’t know what to say … I had to look up “borderline phyllodes tumor” because I really didn’t know what it was. The fact that you had to have a lumpectomy at age 22 is a pretty big deal! How are you healing?

    I have a friend who had a phyllodes tumor removed but hers was benign. But healing from a lumpectomy can take time and I know she went through the same process of worry, waiting and testing that I did but she didn’t know it was benign until after her surgery. So it was many weeks of not knowing and worrying!

    I’m sorry I wish I could offer you some practical advice but I don’t know enough about your rare type of tumor to say much. I’m also sorry you are getting the “at least it isn’t cancer” remarks!! Anyone needing a chunk of their body removed for a tumor deserves a little consideration, in my opinion. (For what it’s worth, I’ve gotten “at least you’re alive” which, although it’s true, doesn’t help me feel any better … I’m not sure why some people are compelled to make these comparisons but they do ... I’m probably guilty of it too.)

    I’m just wondering … would you be able to get a second opinion? I’m not sure how many doctors in your area have experience with phyllodes tumors but it might help you feel better with the plan your doctor is suggesting.