What I now know...or don't know

taiga

I thought I would start a new discussion since I have some additional info. I've jumped ship from the ovarian cancer board. Dx. July 2010 with stage 3a, grade 3, clear cell. In a clinical trial and had IV/IP taxol and cisplatin and have been on Avastin every 3 weeks as maintenance. Found out I have invasion lobular cancer in R. breast (grade 2). Had MRI on Friday, no results yet. Final path. did determine it is ER+ and I am starting on Arimidex today. I also found out it is also HER2+. I can't have any surgery for at least 6-8 weeks due to the Avastin.

I had the BRAC analysis done shortly after my dx. with OC and it was negative. Exactly what it HER2? His nurse said it was an over-expression of a gene. Did I have a false negative BRAC result, should I get a BART? I have a 26 year old daughter is trying to get pregnant, I need some answers!!

Then I read some of the posts regarding the Arimidex. I have had horrible neck/arm/shoulder pain all year while on the Avastin - I was so looking forward to finishing the trial I was in this month and hopefully getting rid of that pain, but from what I've read, I may still be dealing with that.

I have a PET/CT scan scheduled for Wed. If this stuff is in my lymph nodes will they light up with the PET scan? Any info. would be helpful.

roseann4

Sorry you have so much to deal with.
I was diagnosed with stage 1 lobular in 09. I have been on Arimidex for 2 years and have had only minor side effects. Mine was estrogen receptive but her2 negative. From what I have read on the boards, there is a special course of treatment for her2. Until recent years there was no treatment so it's great that they have it now. From what I understand, they won't know for sure about the nodes until they biopsy them. Not sure if they would light up. They inject a dye and remove one to biopsy. They did this while I was having the lumpectomy. If the sentinel node was positive, they would have removed more nodes. In my case, I was fortunate so no more nodes were removed. I had a test called the OncoTypeDx test. They take s sample of the tumor and check it genetically to help to decide if chemo is appropriate. It is done for node negative bc.

Again, I'm sorry you are facing this bud glad you found us.

Roseann

SIROD

PET/CT Scan will show lymph nodes if they have cancer
PET/CT scan will pick up all active cancer. In 2008, for my widespread lung and lining mets, it also picked up celiac nodes. I didn't even know what they were. They do pick up all active cancer. My oncologist, showed me my PET/CT scan on the computer. It was in the form of the plastic woman and I could see where my cancer was. My lungs lighted up as though they were neon signs for a pulmonary doctor. I was fascinated with the technology.

HER2 means that you will be able to have Herceptin that will help in fighting your cancer. It was a great discovery back in 1998 or around that time. I was on Arimidex for years and had no problems with pain in bones and joints. Femara was not kind to me and the pain was awful especially now that the osteoarthritis is very active.

Best wishes for your PET/CT scan.

Doris

Just_Lisa

HER2
HER2 is "Human Epidermal growth factor Receptor 2" .. I've heard it explained as a gene and as a protein ect. But basically if it's positive it just means that the cells are more aggressive. I was HER2+ when i first found out i have breast cancer (last month) and after (submitting for fish) i m now nuetral neither pos or neg. But i do know that it's not something you can pass genetically it just has to do with your particular cancer make up. If u already had the genetic test done(think thats the BRAC) and that came back negative I would not worry about your children or grandchildren. You're not going to pass on a mutated gene if you don't have one ). That was my biggest fear waiting for those results. Hope I helped a little. Still new to all this but I have been reading a lot and asking a lot of questions.