HELP ! I am STUCK on the Fence

SusanV · 10-17-2006, 12:13 PM

Hello Everyone,

Still in the middle of my journey. Completed # 3 of 4 A/C yesterday. Things are going fairly well. RIght now I have a big decision to make.

Now for my Question. During a brief visit with my onc at A/C # 2 I brought up the subject of the Taxene family of treatments. He was against it for me. I am ER/PR + no nodes involved.

At visit #3 I said, " I need sold on why or why not Taxol/Taxenes would be indicated in my case. He sighted the risk vs benefit analysis, and also noted that studies are not available that include women like myself ER + node negative and the use of taxanes. He also mentioned that the benefit is very small in studies of ER- women. OK, now for the hard part...

At the end of our conversation, he said that he would give me 12 weekly doses of taxol if I decided that I wanted it. It would be administered with the herceptin.

I am giving serious consideration to get a second opion about the Taxol with a different onc in the next couple of weeks. On one hand I don't want any more toxins than I need, and on the other hand I want to do all I can.

What do you all think, and what if anything have your onc's told you?

Thanks for you input.... it always is soo valuable to me

Susan V

CPA · 10-17-2006, 04:57 PM

Susan,

I think you are are on the right track in getting a second opinion. Have you gone to Magee Womens? We went there for a consult on the advice of our local oncologist. Dr. Brufsky (sp?) spent a good amount of time going over options and did a good job explaining risks/rewards with the different treatments.

If you feel that you are not getting all of the info you need, there is nothing wrong with going for a second opinion.

-Rich

Sandy H · 10-17-2006, 06:12 PM

I agree with Rich, sounds like a second opinion is a good idea. That sounds like a lot of chemo for stage 1 with no nodes involved. I am not sure about the grade 3 that may warrant more chemo. Keep us updated on what you decide. hugs, Sandy

Becky · 10-17-2006, 06:43 PM

Susan

I forget how big your tumor was. If it is 1cm or larger, I would go for the taxol with Herceptin. I had 2 micromets to the sentinel node so I was node positive so I got the taxol (of which there is great benefit to Her2+ bc regardless of hormone status (I think I posted the ASCO 2006 paper on this subject for you)). Maryanne on this forum was node negative and got taxol with Herceptin (1.1cm tumor) at Sloan Kettering.

I triple the 2nd opinion vote.

Becky

Bev · 10-17-2006, 07:04 PM

2nd and 3rd opinion. I'm ER/PR+, node neg 2.9 cm. I did taxol and Herceptin. There's always the oncotype DX test to predict your recurrence based on an evaluation of your genes. Short term I was OK with taxol, better than AC. Good Luck, BB

jones7676 · 10-17-2006, 07:31 PM

I would double check whether or not it is scientifically indicated based on the analysis of the cells in your tumor. I received the taxol family treatment when it was not indicated based on the studies of my cells (2003) because it is the "standard of care" treatment. Taxol was not the indicated best choice for me because the tumor was hormone negative according to friends who were pathologists that personally double checked all cell studies of my tumor. They had questioned the oncologist as to why it was being given to me. It was not needed, nor did it benefit me. Ask your oncologist to explain or find for you some very recent studies - medical journal articles out there that about how the taxol family alters the cancer cells within your body. I just read them about a week ago, but I cannot find them for you again. Good Luck

SusanV · 10-18-2006, 12:00 PM

Hello Everyone and thank you all for your posts,

I have been receiving all of my care at Magee Womens Hospital here in Pittsburgh, and am actually in the same group as Dr. Brusky, my doctor is Dr. Lembersky. I think I could possibly even get a visit with Dr. Brusky without a whole lot of trouble.

Also, Becky I just wanted to let you know that I printed and saved the ASCO info that you had posted previously. This is what helped me have the guts to bring up the subject again, after I was told no at my second visit.

Thank you all so much.... just having so many doubts, and having my chemo on Monday, not feeling the greatest doesn't help matters either. I will also be finding out the results of my BRAC 1 & 2 testing next week on the 25th. When I feel better, I am sure I will do better with all of this.

Thank you all...it really means alot to me to get your insight & input

Susan V

Cathya · 10-18-2006, 12:38 PM

Susan;

Given that your tumor is greater than a cm I would take the additional chemo....I had taxol (hormone + as well)....don't know if your onc is suggesting that or taxotere. In any case, I had a larger tumor but negative nodes. However, a second tumor was found in my supraclavicular node.....her2+ cancer likes to travel and does unexpected things. I believe it is far better to hit it with the big guns the first time around and try to be sure you're not surprised later. All the best.

Cathy

Cosmo · 10-17-2006, 07:30 PM

Susan,

This is actually my first post, so hopefully i'm doing this right. I was diagnosed with IDC in July 2005 at age 32. The tumor was 1.5 cm, ER+, PR-, Her2+++, grade 3, stage 1, node negative. I received 4 A/C followed by taxol with herceptin for 12 weeks. I did, however, have vascular invasion so I was essentially treated as if I was stage 2. Hope this helps.

Cos