I m afraid.....
Hi everyone
I was diagnosed in April 2022 with a non-invasive DCIS, not IBC.
I had a lumpectomy with clear margins, and they also performed a symmetrization and breast reduction on the other side.
Then I had radiation therapy on the affected breast.
On pathology, it was already classified as ACR 4C (BI-RADS 4C – high grade) with calcifications.
Some time after radiation, I developed a fat necrosis cyst in the breast. I was told it was nothing serious and that it happens often.
I had follow-ups every 6 months and I never missed an appointment.
Then in September 2024, I was diagnosed with IBC. I had peau d’orange, thickened and red skin. I had an MRI and a skin biopsy, which confirmed that the IBC was also in the skin. It’s grade 3. I have contralateral axillary lymph node involvement, but my right breast is unaffected — and that’s what makes me stage 4. There is no disease anywhere else.
I had 6 cycles of chemotherapy every 3 weeks, which I finished on February 10. I had repeat MRI and PET scans, and I responded very well — after just 2 chemo cycles, the PET scan no longer showed anything.
Since then, I’ve been on Phesgo alone, but I haven’t had a mastectomy because I’m very afraid of what it implies for me. My Ki-67 is high… and there are LVI (lymphovascular invasion) in my breast. I’m afraid there are microcells left and that removing the breast could make everything flare up. The surgeon and the team told me they don’t know whether mastectomy would improve my survival.
I don’t know what to do. And they don’t seem to want to offer me radiation therapy again....
And yet, since I’ve been on Phesgo alone (since March 10), I haven’t had a PET scan — the oncologist wants to do it in September, which would mean 6 months without any PET scan... That’s not normal...
thanks in advance for your advice or similar situation ...
Comments
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@lylo71 - Thank you so much for sharing your story. We’re truly sorry you're facing all of this, but glad you found us.
While you wait to hear from other members who may have had similar experiences, we wanted to share this section from our main site that might help you learn more about inflammatory breast cancer (IBC) and its treatment options.
You might also consider posting in these forums, where others managing complex or advanced diagnoses are often active:
We’re really glad you found us and hope you find support here.
Sincerely,
The Mods
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