HER2 - No Herceptin ?

lyce · 06-12-2009, 10:47 AM

I had invasive bc in 1986-lumpectomy, then quarter of breast removed, radiation. In 2003-4 I was diagnosed in the other breast with a small invasive ductal carcinoma, her2+,hormone neg, one node positive, surgery with breast reduction in that breast, dense dose chemo that had to be stopped due to severe neuropathy, radiation.This lump I found myself about 4 weeks after a mamo--even later it would not image. I was not admitted to the Her2 trial because of previous breast cancer and not given herceptin when it was available because I was a couple of months more out of chemo than was recommended. In 2006 I had a localized lobular carcinoma removed, from the breat originally treated- no further treatment recommended. Naturally there have been endless biopsies etc. over the years. I'm glad to be around! Are there women at your site who tested Her2 positive and did not receive herceptin? How are they doing? This question is of great interest to me. Thank you for your time, ce

AlaskaAngel · 06-12-2009, 11:15 AM

Hi - I was diagnosed in late 2001/early 2002 at age 51 with a 1.6 cm ER+, PR+, HER2+++ IDC and some DCIS, and had lumpectomy, CAFx 6, rads, and 1 3/4 years of tamoxifen. I never had a taxane, dose dense, or trastuzumab and have never had recurrence. Hope that helps.

AlaskaAngel

mcgle · 06-12-2009, 11:43 PM

Me, too.

Dx 2005 - 2.4 cm intermediate and high grade DCIS, with a tiny invasive component. ER+ / PR+ / weakly HER2+. Postmenopausal.

Surgery, rads and tamoxifen. No recurrence (long may it continue!).

You are not alone!

Mcgle (UK)

Montana · 06-13-2009, 07:47 AM

Just missed getting H. See signature below. All is well.....

Sue

lyce · 06-13-2009, 05:49 PM

Thanks for the replies. I knew that others like myself were coming here and I have wondered how we are doing. lyce

Rich66 · 06-13-2009, 09:43 PM

Gotta say...
Mom was Dx late '04 HER2 + ER+. Docs recommended rads and Arimidex. I got her numerous 2nd opinions..all went with original doc. Trials were available but they thought chemo too harsh. I argued for Herceptin alone with no takers. Also argued for Oncotype DX test to evaluate risk vs benefit better..no takers. After radiologist told her she had a "cured cancer", Mom now has mets in liver and lungs. At this point, the cancer stem cell issue or paradigm shift feels like Herceptin did back then: New, likely a game changer, and largely ignored outside of trials.

mcgle · 06-13-2009, 10:45 PM

I am very sorry to hear about your mother, Rich. Things are done so differently now, aren't they?

Mcgle (UK)

Rich66 · 06-13-2009, 10:50 PM

It was on the cusp then and I still believe forward thinking oncs were doing it then. I have copies of clinic notes from supposedly world class institutions going into extensive detail about "the son's" paranoia over HER2 status. I would like to ask them if they would like to revise their comments now. Again..feels like a change in approach is coming now. And I'm not so willing to discount my intuitions these days.

mcgle · 06-13-2009, 11:10 PM

My case was submitted to an eminent professor of oncology who was adamant I should receive neither chemo nor herceptin. So far he has been proved right (thankfully), but there is still that element of doubt ...

I really feel for you, Rich.

Mcgle (UK)

lyce · 06-14-2009, 03:20 PM

Rich, it doesn't sound like paranoia to me. I am sorry about your mom. You will both be in my thoughts and prayers. lyce