HER2 Support Group Forums - View Single Post - Right mastectomy 3 yrs ago....now left side?

suzan w · 05-25-2014, 08:32 PM

In 2005, when I was diagnosed, I was told, it's not IF, it's WHEN. I had invasive lobular carcinoma in my left breast. My decision for a bilateral mastectomy was never questioned as invasive lobular spreads single-cell through the bloodstream. Even though I was stage 1, I was given a poor prognosis due to ILC and Her2+++. In order to get herceptin, at that time not yet approved for early stage BC, the protocol was chemo first.
All that being said...now, almost 9 years later...herceptin has completely changed the course of Her2+ breast cancers. As has the BRCA1 and 2 testing. Every day new research and trials are revealing more and more information leading to different treatment protocols.
We do the best we can with the information we have at the time we are making these decisions...usually making decisions rather quickly considering the gravity of the choices. It is very hard not to look back and ask the "what ifs" . Stay informed, ask questions, go for another opinion...
Best of luck to you, Deeze...let us know how things go!!!

05-25-2014, 08:32 PM	#6
suzan w Senior Member Join Date: Sep 2005 Location: Naples FL Posts: 1,744	Re: Right mastectomy 3 yrs ago....now left side? In 2005, when I was diagnosed, I was told, it's not IF, it's WHEN. I had invasive lobular carcinoma in my left breast. My decision for a bilateral mastectomy was never questioned as invasive lobular spreads single-cell through the bloodstream. Even though I was stage 1, I was given a poor prognosis due to ILC and Her2+++. In order to get herceptin, at that time not yet approved for early stage BC, the protocol was chemo first. All that being said...now, almost 9 years later...herceptin has completely changed the course of Her2+ breast cancers. As has the BRCA1 and 2 testing. Every day new research and trials are revealing more and more information leading to different treatment protocols. We do the best we can with the information we have at the time we are making these decisions...usually making decisions rather quickly considering the gravity of the choices. It is very hard not to look back and ask the "what ifs" . Stay informed, ask questions, go for another opinion... Best of luck to you, Deeze...let us know how things go!!! __________________ Suzan W. age 54 at diagnosis 5/05 suspicious mammogram-left breast 5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++ 6/14/05 bilateral mastectomy, node neg. all scans neg. Oncotype DX-high risk 8/05-10/05 4 rounds A/C 10/05 -10/06 1 yr. herceptin arimidex-5 years 2/14/08 started daily self administered injections..FORTEO for severe osteoporosis 7/28/09 BRCA 1 negative BRCA2 POSITIVE 8/17/09 prophylactic salpingo-oophorectomy 10/15/10 last FORTEOinjection RECLAST infusion(ostoeporosis) 6/14/10 5 year cancerversary! 8/2010-18%increase in bone density! no further treatments Oncologist says, "Go do the Happy Dance" I say,"What a long strange trip its been" 'One day at a time' 6-14-2015. 10 YEAR CANCERVERSARY! 7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use 6-14-16. 11 YEAR CANCERVERSARY!! 7-20-16 Prolia injection for severe osteoporosis 2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL. 6-14-17 12 YEAR CANCERVERSARY!! still suffering from CIU. 4 hospitilizations in the past year as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!! 6-14-18 13 YEAR CANCERVERSARY!! NED!!