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

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

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

MJo · 10-20-2006, 10:00 AM

Susan. I hope you will get a second opinion.
I had a .55 CM tumor, no nodes, er/pr+ and Her2++. That made me stage T1B, very early. I had the Oncotype DX test, which has been shown to accurately predict recurrence rates for node-neg women who are trying to decide whether to take chemo. My score was 32, the beginning of the high risk category, with a 22.5% chance of recurrence in 10 years. I recently visited the Johns Hopkins Ask an Expert site. Their position is that the Oncotype DX test is useful for node-neg women who ARE NOT HER2+. I'll bet you that EVERY Her2 tumor tested by Oncotype this past year has been high risk. I am glad I could add to the body of knowledge. It cost me $3000, since insurance wouldn't pay for the test.

Please consider getting taxol, which has been shown to increase the efficacy of Herceptin. I think we need to treat Her2 aggressively.

CLTann · 10-20-2006, 02:19 PM

I have essentially the same report as yours, except that I had a mstec. Then I opted for no chemo and no radiation. I am post meno and on Arimidex. If you had mastec, I would strongly suggest not doing chemo/radiation. It is not always true that more aggressive treatments are good for BC patients. Some chemo do not work effectively for ER/PR positive patients. When you read about the side-effects of chemo and Herceptin among the people in this group, you can readily see that sometimes the damages were disproportionately greater than the alleged benefits. In summary, it is a flip of a coin in your case. You and only you can make this arbitrary choice.

Ann

Hopeful · 10-20-2006, 02:30 PM

Susan V, the more I read, the more I learn that terms like "ER+" and "ER-" are what lawyers call "terms of art." There is a problem in making generalized statements about the treament of hormone positive and hormone negative patients, due to the fact that there is not a universal consensus on exactly what percentage of your cells have to stain positive for a hormone receptor for you to be considered "positive." Perhaps considering the specific percentages of ER and PR will be a help in making your decision. There are others here who are much more knowlegable on how well taxanes work in ER+ or ER- patients, and I leave that topic to their superior knowledge. I just wanted to point out that this is something to consider. From your posts it is clear you are striving to make the most informed decisions you can. Whatever you decide, have confidence that you will have weighed the pros and cons and made the best choice for you.
Best of luck with your treatment plan.

Hopeful

Becky · 10-22-2006, 04:32 PM

In the ASCO presentation (in 2006) that I already posted for Susan V, taxanes are a huge benefit for Her2+ women regardless of hormone status.

Kind regards

Becky

tousled1 · 10-23-2006, 03:28 PM

I know that when I received my chemo (neo-adjunct) I was given Taxatare. The purpose of my chemo was to try and shrink the tumor. After 4 A/C the tumor was basically the same. After only 2 Taxatare there was a marked decrease in the size of the lump. I completed the 4 rounds and then had surgery. We knew before surgery that I had lymph node involvement -- just didn't know how extensive. When I had my initial biopsy my surgeon also biopsied a few of my lymph nodes.

Bev · 10-23-2006, 08:39 PM

For what it's worth. I also read somewhere that Taxanes sensitize cancer cells to the effects of radiation if rads are in your future. BB

atdec05 · 10-25-2006, 03:26 PM

I am IDC Stage 1 - 2 tumors (8mm + 5mm), no mico-invasion, er/pr-, her2+, grade 3. I asked my onc. about getting Taxol (her initial recommendation was 4 DD A/C followed by 52 Herceptin treatments). My onc. went back and forth, but finally recommended no Taxol. I think this was based on the HERA trial results (or whatever the European ones were) that had Herceptin after various kinds of chemo, vs. the US trial results that had chemo (including Taxol) plus Herceptin. She said for early-stage women the benefits didn't warrant taking Taxol.

I would think because you're also er\pr+ you have other options to reduce your recurrence.

- Anna

p.s. it's interesting and scary to hear about Cathy's experience of having negative nodes, but a second tumor in your superclavicle node. How was that found? How large was your primary tumor?

SusanV · 10-27-2006, 05:49 AM

Just wanted to let you all know, I have my appointment for my second opinion on Monday, October 30th at 11:00 am

One more update my BRAC 1 & 2 results came back negative this week.

Susan V

Bev · 10-27-2006, 08:29 PM

Susan, Let your 2nd opinion post his reasons for no T & H. We all eagerly await. Best of luck. BB

SusanV · 11-07-2006, 12:06 PM

Hey guys,

Just wanted to give you my treatment update. Went for a second opinion to inquire about asking about adding Taxol with my herceptin. Using my specific stats, age, tumor size, health, tx's, er status and other details the numbers for me specifically are as follows for Recurrance:

Add taxol to current treatement recurrance % is 20.3
Without taxol recurrance % is 20.9

For me the benefit is not even a whole % point. It is in the tenths of a percent. Weighing that against the risk/benefit considerations, and the opinions of my onc and my second opinion, I have decided not to add the Taxol to my treatment. I did a lot of soul searching about this, and am finally at peace with my decision. With my stats and especially my highly ER /PR+ % the onc was happy with my decision, and said that the biggest benefits to me will come with herceptin and tamoxafin. However that is not to say that in a study of 100 women, using 20.9 vs 20.3 it would without a doubt help one or a few women in 100. I am just banking my odds in the other majority.

I am do to start radiation (6 weeks) as soon as my local Cancer Center gets my charts to set up my appointment, and am beginning my three week Herceptin on November 27th.

My second MUGA is set up for this Thursday, November 9th, and I am hopeful that the score didn't drop too much from the 4 A/C
Wishing everyone well !

rinaina · 11-07-2006, 03:48 PM

I was in the same boat as you but I am stage I, er/pr negative, 1.4 cm tumor grade 3 her2+. I am not getting taxol and was unsure so did the research, got 2nd and 3rd opinions and all came in the same, NO TAXOL. I too am comfortable with this decision. We can't take these chemo drugs lightly either. Hopefully, the professionals and research have done right by us. Good luck and feel better. It does get so much better after chemo.