Anyone find out late that they are multi-focal er+

Laura · 11-25-2006, 12:04 PM

Hello all
I was diagnosed in Mar 06 er-/pr-, her2+++ with mets to bone. T/C/H and Zometa brought me to complete response in 3 or 4 months. I struggled with a decision to have bilateral mastectomies after I was told that I had a complete response, my doctors said it was not stardard protocol for stage iv. I started to have breast changes, showing up as diffused haziness on mris and ultrasounds. I decided to be done with the weird tests and have the mastectomies. Turns out the tumor was back, 9cm. However, pathology now shows that it is er+ pr. My periods, which were normally very irregular (60-120 days apart), started to be every 28 days during and after chemo. Estrogen was running wild in my body. Isn't it plausible that if I would have had my ovaries suppressed and Tamoxifen the primary wouldn't have come back? My oncologists are talking about chemo again and that I might have become resistant to herceptin. They would like to get me on Lapatinib. I wanted to get at least a few years out of Herceptin before I used Lapatinib. Does anyone have any ideas on what I should do? I may be jumping the gun because not all of the pathology is in yet. But I want to be prepared. I had an easy time with chemo the first time through... I know I can handle it again, but I don't want to use everything up so quickly.<O:p
Laura<O:p></O:p>

diagnosed stage iv 3/06 age 37 (4 children ages 12, 9, 5, 4)
her2+++, er-/pr-
mets to bone (bone biopsy her2+++ (IHC), her2- (FISH), er-/pr-)
T/C/H 4/06-8/06
complete remission
continue Herceptin every 3 weeks<O:p</O:p
weird breast changes
11/06 bilateral mastectomies<O:p</O:p
9cm mass removed her2? (waiting for path), er+/pr-<O:p</O:p<O:p

Sandy H · 11-25-2006, 12:15 PM

Laura, if that was me I would be questioning this compete response! That seems like a short time for reocurrence if it was completely gone. I think you were wise to have the bil mastectomies and what you should do now I am not sure. Maybe, have a second opinion? Lapatinib is for those who the Herceptin is not working for anymore. I am sure you will hear from others on the board. Wishing you well on this journey. You have come to the right place. hugs, Sandy

chrisy · 11-25-2006, 12:52 PM

Hi Laura,
What a lot to deal with. I'm with Sandy - get a second opinion as your situation seems more complex than just "the herceptin isn't working"

It sounds to me like you maybe had an undiagnosed or fast growing 2nd primary rather than a recurrence of the original tumor which was ER-/PR-/Her2+. If I understand your posts, this "new" one is ER+ PR -. Is it Her2+?

It is unusual but not unheard of to have 2 separate BC with different pathologies. So it may be that the Herceptin IS working on the original tumor but now you have a "different" one that is not Her2+. But IS ER+ which would possibly open up other treatment options (tamoxifen, arimidex) to add to your arsenal.

A third possibility is that one mechanism of Herceptin resistance is that the ER pathways get activated and revert ER- to ER+.

Any of which means, get some additional input on this pathology and potential treatments!

This disease is a sneaky little bugger, isn't it. But we can be sneaky too.

Keep us posted on your progress.

SusanV · 11-26-2006, 11:47 AM

Laura,

Although I do not have any specific answers for you, I just wanted to say that I am glad you are here and posting questions. I think it is also a great idea to get more than one opinion about what to do next...I sought out a second opinion when considering options for myself. Please keep us posted about how you are doing !

Thinking of you