Sarcoidosis and HER2+?

Alicethecat

Hello ladies

It looks as though I might have sarcoidosis (tendency to make granulamatomas lumps).

Does anyone else have this with HER2+ breast cancer or who has been treated for HER2+ breast cancer?

Between 30 and 70 per cent of people don't need treatment but if they do, prednisone, a steroid, seems to be the first-line treatment.

I am worried about suppressing my immune system at a time when I am trying to revover from cancer treatment.

Any thoughts please?

Kind regards

Alice

chickydee

Hi Alice, I have sarcoidosis but I am HER2 negative. Chemo made all of my cancer disappear except for the lymph nodes in my chest. They found sarcoidosis when they biopsied my chest lymph nodes before radiation because they didn't want to radiate the nodes if it wasn't cancer. It never affected any of my treatments and still doesn't bother me (even though it lights up a PET scan). I just have to see a pulmonologist once a year to keep an eye on it. I suspect that this isn't really helpful to you but my thoughts are with you. Hugs

Alicethecat

Hello Chickydee

This is incredibly helpful to me. Thanks so much for taking the trouble to reply.

In brief, this accords with what I hope will be the case - sarcoidosis is likely not to be a problem unless it affects the vital organs.

I take your point about lighting up scans - on guard!

Thanks so much again

Alice

lynnhwilson

hello i am also her 2 and being treated with Herceptin and have been diagnosed with sarcoidosis. I have 6 Herceptin infusions remaining and im interested in what treatmwmt you received and how your sarcoidosis was monitored and if it resolved after completing treatmemt.

Thank you!

lynnhwilson

Alicethecat

Hello Lyn

Well done for nearly getting to the end of Herceptin! I remember how great it feels to finish that part of the treatment because it seems to go on and on but so grateful to Dr Slamon and the team for working on it.

It didn't cause me any problems. Probably has burnt itself out - as my GP said it would - because I can no longer feel a small row of lumps under my breast cancer arm. I haven't had any more lung scans because I ended up with a bit of radiation damage and have declined any more. That said, I'm doing fine. My normal asthma med is all I take.No other treatment.

My sarcoidosis seems to have resolved and hopefully so will yours!

Best wishes

Alice