IBC moved to the other breast

inks

Hi, I am asking this on behalf of a friend who does not speak English. She got diagnosed in fall of 2016, ER+, HER-, IBC, Stage III, with 6 lymph nodes affected. She tried several chemo-therapies until one worked and cleaned her up. But while she waited for surgery it already returned. She got more chemo and had mastectomy. When she went for rads it moved to the other breast. Now she is getting more chemo and her ER has changed to -. She is getting treatment in Estonia and they do not use the newest drugs.

So the question is on her paperwork she has written stage IV but no one has really addressed the staging and what her prognosis is. So is she stage IV? Or is she locally advanced? She still only has some suspicious axillary nodes, one on each side. Clear bone scan and clear CT. No palpable or US visible mass in the newly affected breast. Just the skin rash and swelling , thickening of the skin.

She also had Oncodeep testing done but most of the medicines suggested are not covered by their health care system. She should be sensitive to Metformin and some cheaper mTor inhibitors.

I am grateful for any advice you can give especially about the staging. Thank you!

bluepearl

If she has had clear PET and CT scans then she is not Stage 4. IBC is usually classed as stage 3 right away because of its aggressiveness. The other breast may or may not be IBC but that needs to be confirmed. Lymph node recurrence is called a local recurrence but she is at very high risk for metastasis given her diagnosis. Metformin is not standard treatment for any breast cancer. I am sorry to hear that her medications are not covered by an insurance or healthcare system as theses are critical. The change in hormonal status isn't unusual and the chemo is the only treatment for negative status...which she is doing...and usually works well for negative status. Wishing your friend well in her journey with this disease. (((HUGS))))

inks

Thank you , Bluepearl so much for your answer! The other breast is IBC as well, she had the biopsy and that's when they found it had lost he ER receptors. They kind of told her that they are not going to do any more surgery on the breast where the cancer now moved.

Metformin is in clinical trials for breast cancer at the moment. An given her Oncodeep result she may benefit from it. I hope she gets to try it since it's not as harsh as chemo. But I could not find any more info on Oncodeep on this forum. Everyone here does Foundation One or Caris. I wonder if they are similar?

amarantha

Inks, my story is similar to your friend's. I had IBC in the left breast, it was treated with chemo and radiation and removed. Two years later the cancer had returned in the skin of my ex breast, in right breast and right lymph nodes. It was considered metastatic, because it jumped to the lymph nodes on the opposite side. The hormone receptor status was supposedly highly sensitive to estrogen, but with the warning that it could suddenly change. The original IBC on the left side had been 90 percent oestrogen sensitive, then morphed quickly to being less than 20 percent. I too was told there would not be new surgery -- too dangerous. (However that changed later). At first this recurrence was controlled somewhat with Afinitor, but that failed decisively after ten months. Then I was put on Ibrance which did not work. I was no longer hormone receptive at all. Meanwhile mets had spread to spine and lymph nodes all over. Then I had chemo -Halaven, which beat back the mets in bone and lymph nodes, While Halaven was very sucsessful in for the bones and lymph nodes, even skin mets, unfortunately during this time, the right breast became huge and inflamed. It was considered to be a fresh new episode of IBS, and treated the same way as the first one had been, with massive Cisplatin and concurrent chemo. And finally we decided to remove the breast because it was so massively taken up with the cancer. That operation was 3 weeks ago. Now I am actually back in the hospital for an infection in the scar area which might actually be a new onslought of the skin and lymph mets. Ñext project is return to chemo Halaven, as soon as the wound is healed.

Metformin is a good idea. I was on Metformin for years and years for polycystic ovary syndrome. It did not prevent my cancer, but it cannot hurt.