Hi Onecynth- I am in Northern California too. I see Dr. Laura Esserman, a breast surgeon at UCSF and Dr. Andrew Gross, A Rheumatologist also at UCSF. I feel like I am getting excellent care, even thought the disease is rare and there is not a lot know about it. At this point, most of the treatment is coming from Dr. Gross. Dr. Esserman was the one who diagnosed it and sent me to Dr. Gross. I still see her occasionally though too.
Thank you for the response. I have SLE + a multitude of other autoimmune diseases and have taken prednisone for the SLE for years. It helps the antibiotic work by slowing down my immune system. I know that sounds strange, however, it works for me. I did read up on removal and I have decided in no way shape or form will I do this. I have not found any info on the numbers, how many have these ( I found 3 variants of this disease) breast diseases? afflictions? I am still reeling that I have dealt with this in one breast since 93 and now the other over a year and no one in that time ever gave it a name. They just kept cutting away. I am ever so tired, ever so emotionally drained. I am grateful to have found this site and thank you again for the time to respond to me.
Thank you for the response. I have SLE + a multitude of other autoimmune diseases and have taken prednisone for the SLE for years. It helps the antibiotic work by slowing down my immune system. I know that sounds strange, however, it works for me. I did read up on removal and I have decided in no way shape or form will I do this. I have not found any info on the numbers, how many have these ( I found 3 variants of this disease) breast diseases? afflictions? I am still reeling that I have dealt with this in one breast since 93 and now the other over a year and no one in that time ever gave it a name. They just kept cutting away. I am ever so tired, ever so emotionally drained. I am grateful to have found this site and thank you again for the time to respond to me.
I have always been told by any doctors that I have seen that taking the breast won't really help in the long run.
If you read through the posts you will find women here who have had it return regardless of breast removal.
If you read through the posts I am sure you will find a lot of helpful information. (different drugs, slay, diet changes) Maybe even a doctor in your region who knows this illness.
I am in Ontario, Canada and have some doctors at a hospital in Toronto who are my caregivers. I am currently waiting for some test results before I can try some other drugs besides the steroids. Prednisone will help but has awful side effects. Have you tried Prednisone?
I found that it is important to arm yourself with as much information as you can before you see a doctor. Lots of them don't know this illness and also become quite overwhelmed by it. My GP really appreciates this forum and the info I bring to him from here. Even though he is not my caregiver for this condition anymore, he is my first point of contact for things I need to deal with it when it does flare up.
Good luck to you! Keep letting us know how it is going. .