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Paris · 01-05-2009, 07:58 AM

This is a very thought provoking thread and I think some very valid points have been made especially Alaska Angel's. I was in your shoes two years ago-no nodes, clean margins no vascular invasion and I had a bi-lateral mast. It is a difficult decision as we never really know whether the decision we make is the "right" one. We have to look behind us to see what the studies have shown to be effective choices but don't know what they will do for/to us in the future. To only have that crystal ball to guide us!

I do wish as Alaska Angel suggests that doctors be more up front with what the potential side effects are as I have personally experienced many side effects that very few get. Perhaps the doctors don't want to scare patients away from chemo. Chemo and herceptin really beat the hell out of me. I am still trying to get back to being the strong, energetic and smart person I was before cancer. Shaving my head was the hardest thing I've ever done. It was and is still at times very difficult.

Given what I know now about small her2 cancers and their aggressiveness I am very glad I did chemo and herceptin. I hope that as those herceptin pioneers get farther out from treatment we will continue to get good news. The only thing I wish I had done was to be more diligent in finding out about side effects of steriods and aranesp as there has been alot of controversy surrounding the use of red blood cell stimulants.

I would suggest you get a few opinions on treatments and if you can, go to one of the major cancer hospitals and to also consult with an onc. who has alot of experience with her2 cancers. Do your homework beforehand and have a list of questions ready for them. Make sure they answer them completely and if they don't then I would take that as a red flag. Hopefully the knowledge you gain will help make the decision more clear. If you are hormone positive ask for the oncotype dx test. You will also then be able to do hormone therapy as well. Ovarian ablation sounds intriguing as I've read that blocking estrogen is as effective and maybe more so than chemo but you have to have an estrogen fueled cancer.

Please let us know what you decide and post if you have any other questions. There are alot of very smart and kind women here!

Hugs,
Paris

01-05-2009, 07:58 AM	#12
Paris Senior Member Join Date: Jan 2007 Posts: 73	This is a very thought provoking thread and I think some very valid points have been made especially Alaska Angel's. I was in your shoes two years ago-no nodes, clean margins no vascular invasion and I had a bi-lateral mast. It is a difficult decision as we never really know whether the decision we make is the "right" one. We have to look behind us to see what the studies have shown to be effective choices but don't know what they will do for/to us in the future. To only have that crystal ball to guide us! I do wish as Alaska Angel suggests that doctors be more up front with what the potential side effects are as I have personally experienced many side effects that very few get. Perhaps the doctors don't want to scare patients away from chemo. Chemo and herceptin really beat the hell out of me. I am still trying to get back to being the strong, energetic and smart person I was before cancer. Shaving my head was the hardest thing I've ever done. It was and is still at times very difficult. Given what I know now about small her2 cancers and their aggressiveness I am very glad I did chemo and herceptin. I hope that as those herceptin pioneers get farther out from treatment we will continue to get good news. The only thing I wish I had done was to be more diligent in finding out about side effects of steriods and aranesp as there has been alot of controversy surrounding the use of red blood cell stimulants. I would suggest you get a few opinions on treatments and if you can, go to one of the major cancer hospitals and to also consult with an onc. who has alot of experience with her2 cancers. Do your homework beforehand and have a list of questions ready for them. Make sure they answer them completely and if they don't then I would take that as a red flag. Hopefully the knowledge you gain will help make the decision more clear. If you are hormone positive ask for the oncotype dx test. You will also then be able to do hormone therapy as well. Ovarian ablation sounds intriguing as I've read that blocking estrogen is as effective and maybe more so than chemo but you have to have an estrogen fueled cancer. Please let us know what you decide and post if you have any other questions. There are alot of very smart and kind women here! Hugs, Paris __________________ Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications. ER-/PR- HER2+++ Bi-lateral masectomy 12/15/06 w/expanders SNB Node Negative Chemo Taxotere, Cytoxan 2/07-4/07 Herceptin Started 5/07 Exchange surgery 6/15/07 Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy On heart meds 'til? Age 40 at diagnosis Cancer may have been a defining moment but it does not define me!