2nd Opinion @ UCSF

Faith in Him · 03-11-2008, 04:20 PM

So yesterday I met with Dr. Christopher Benz. Very nice facility and people. He felt that I needed to have the mastectomy scheduled as soon as possible and followed by a few more rounds of chemo. Rash is gone.

Anyhoo, the thing that is bothering me again is the her 2 status. At dx, I was strongly her2+. When the cancer came back it came back as er/pr/her2-. This is very upsetting to me. I asked the dr about this and he said that both tests were done the second time to determine her 2 status. I believe only one test was done the first time. My local dr believes that I am still her2+. Dr. Benz can not say for sure although he feels it is good to stay on herceptin for now. When they do the mastectomy and test the breast tissue, then we may have more answers.

So my quesstion is: Now is my prognosis worse because of less treatment options? Is triple negative more aggressive than her2+?

Mary Anne in TX · 03-11-2008, 05:21 PM

Whew! What a deal! But I have a good BC friend that is triple negitive and she is doing really well on her treatment meds. I'm not real familiar with the meds she is on, they are different from mine, but they are working! To me the most important thing is to get that path report and some real answers. You're one strong, smart lady and will wrap your mind around whatever is needed to get the best of those BC cells and get them gone! Not knowing is tough, but you're tougher! I have to tell myself..."I'll know when I know...til then I'll trust and believe". I'm praying for ya, girl! Bunches of love, ma

Sheila · 03-12-2008, 04:31 AM

I do know that Her2 Status can change, but the possibility that the error can lie in the lab doing the testing....did they do IHC or FISH Testing on your tumor? Just bumping this up so you can get more feedback from others. Maybe a 3rd opinion or retesting is in order to confirm all the specifics. Sending lots of prayers to you.

Jean · 03-12-2008, 11:33 AM

Dear Faith in Him,
Brenda is correct...her 2 status can change over to neg.
I strongly suggest another test and the FISH is the most desirable
for accurate results. It is more exspensive, but well worth it.

Try to relax a bit now and prepare your body for surgery. You have already come a such a long way and doing everything you can to battle this monster. Your surgery will bring some clear answers. In the meantime be kind yourself and take a deep breath now...I know it is easier said then done. You will heal faster and be stronger as you prepare your
mind and body for this journey.

My prayers and good wishes are with you.
Kind Regards,
jean

Jean · 03-12-2008, 11:53 AM

Your doctor may or may not know the answer to this question.
It is important that he/or/she find out...Has the laboratory
properly validated the HER2 test it uses? The information about the
validation of the Her2 test can be found by contacting the head
of the laboratory (often the Pathologist).

If the laboratory does not have control/assurance procedures in place, the sample should be sent to a reference laboratory that does meet
quality control/assurance procedures.

Hope this helps.
Kind Regards,
Jean