How Many are doing 10 years on Aromatase Inhibitors
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Lago, I told my MO when I was first diagnosed that I felt like I was screwed. My risk was high in the first 2-3 years because I'm Her2+ and then 7-10 years down the road because I'm highly ER+. When could I ever feel "safe" or at least "safer"!?! From what I just read I'm not at a higher risk down the road. At least thats what I hope I just read
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I am not highly ER/PR. 30% ER 5%PR. When I said to my MO that I'm not highly positive she said "it doesn't work that way." I was a bit upset with her at the time so I never did get to ask her how it does work. I think a lot as to do with my tumor size being so large.
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The article mentions highly estrogen positive but who knows what that actually means. I do agree that being ER+, regardless of percentage, means that you will benefit from an AI or Tamox. Having a bigger tumor does mean that you have a higher chance of some cells escaping into the body. But I feel it's more amatter of either Herceptin works or it doesn't.
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thanks ruthbru
Would like the cites you quoted from. Might go to my onc with i
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I typed in the phrase 'clinical trials on the benefit of extended endocrine therapy' and read a bunch of them. I didn't write down the sites....I could go back and look (but not for a few days because I am getting company tomorrow!).
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AIs for longer than 10 years interesting article, lists some current trials
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yikes, I will be on it for ten years, one more year to go! I stop taking it in April of 2016! I wonder if my Onc wil want me yo take it longer!!
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I've been on arimidex for 5 years and have no qualms about another 5 years. I would rather err on the side of caution.
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I just passed my 6 year mark on Aromasin. At my 4.5 year mark, I asked my Onc what her opinion was about patients remaining on the AI for more than 5 years. And that I was open to remaining on it. She said it hadn't been proven that staying on longer than 5 years was a benefit. I truly believe she researched that because at my exact 5 year appointment, she brought it up even before I had a chance to. She said she believed it would be fine for me to remain on Aromasin for the near future as I was doing well on it & my last DEXA scan from earlier in the year (original & current dx: osteopenia) had shown stable in my spine & improvement in my hip (it could be the other way around, I'd have to get up to get my file to be sure- mox-nix). I am 100% estrogen/progesterone positive.0 -
Just fyi, when you see 3-4% benefit for extending AI therapy, this is the same or greater than for chemo for most women.
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Aug242007...thanks, good to know.
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My MO said I will be on Femera the rest of my life,( due to the large size of my tumor) I took tamox for 5 years, now going on two for the Femera.
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gale1525...how are you doing on the Femera?
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I was pre-menopause age 49 when I started Tamoxifen but after 3 months could not tolerate the side effects. My oncologist at that time 2006 was against my getting an oophorectomy but I insisted so I could switch to an AI. My dx was ER/PR+ 100%, HER2 neg and 1/18 nodes positive. When I changed to another oncologist he suggested staying on an AI at least 8 years if I could tolerate it. I just finished 8 years on Femara and have had several Zometa infusions for osteopenia issues. I hope to stay on an AI for minimal 10 years and would seriously consider 15 years for the peace of mind. I've always felt myself to be high risk being so strongly hormone dominant and with a positive node.
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I am doing fine on the Femera? I have been taking Actonel since I was diagnosed, because my primary care doctor said that the chemo would be really hard on my bones, still having some bone loss although is hasn't been too bad. I also take calcium 1200 mg, 5000 mg vit D, vit K-2 and also lift weights.
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Gale1525 How big was your tumor? Did you have any nodes?
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So do I have this right or did I miss something: it seems that definitive studies aren't yet in re AIs and the benefits of extended therapy past 5 yrs, but nearly everyone posting here says that their MOs are keeping them on it for more than 5 years? What gives?
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Nope, my didn't keep me on, no one I know personally has been kept on, and I know a lot of people on the boards who were done after 5 years also. I think since the question on the title of the thread is 'how many ARE doing 10 years'......those are mostly the people who are replying (except me, who sometimes pokes around places where I don't belong
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Reading the replies I take into account if the patient had positive nodes or how strong their hormone status. This may be the difference in some of the responses from the oncologist. It would be interesting if their oncologist treated both groups of patients the same - that would not sound very personalized to me. Each patient is an individual with different risk factors and hopefully is treated as such. (I would hope.)
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To the question "what gives?" What gives is the fact that 30% of all women and men diagnosed with breast cancer die of breast cancer. Studies show that many of the progressions to metastatic status happen after the usual 5 years of AIs. This is a fact. After you are metastatic you die. That's what gives. Read the studies, read the facts.
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Exactly - after 5 years some are still at higher risk than others. The Oncotype test is suppose to assist in determining who. That test was not allowed for me when dx in 2006 with a one positive node.
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Melissa, did you get the results of the BCI test you had done back yet?
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At present MD Anderson is recommending 10 years for ALL ( er+) invasive breast cancers as they are saying the final results are not in yet but it is pointing to this being the case. My Oncotype score was 6 with a grade1 but they still suggested continuing.
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Also tumor size is a big factor in deciding
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IDC seems to be the deciding factor for MDA even if the tumor is on the smaller side.
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hmm - do you know of any MDA links mentioning this recommendation? They are very highly respected and I wish I had been treated there.
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I'm VERY thankful I am not subject to that blanket recommendation by MDA.... and I doubt that I would be the only one on the planet, so I hope they get better information soon to work with.
(1.9 cm IDC. No trastuzumab. No AI. Tamoxifen for 1 year at full dose and then 3/4 year at half-dose. Still NED at 12 years out.)
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CP418- Not sure if MDA has any links that include this but this is what they are telling their patients...at least for now. And yes MDA is for sure highly rated. When one of the highest paid pro golfers in the world had both his mom and wife diagnosed with BC this is where they went even though they do not live anywhere near to it. That told me a lot!0 -
Thanks hmm.
I've often wondered if hormonal therapy might be of more benefit for "some" patients than chemo. I think I've seen some recent articles mention neoadjuvant hormonal therapy in place of chemo to check tumor response. When I was diagnosed it seemed like everyone was treated the same. They were just starting to use neoadjuvant chemo for large tumors to save the breast. It seemed like we all got the same chemo cocktails plus Herceptin if HER2+. I use to refer to it as drive through McChemo. 
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The statistical info my mo shared with me showed tamoxifen or an ai for 10 years reduced recurrence risk from 30 to 20%. Chemo bought me an additional 4- 5%. That is, in my early stage dx, doing nothing would have meant a 30% possible recurrence rate within 10 yrs. HT brought that risk to 20%. Chemo added to that makes it around 15%. I have to admit I was junk punched when I learned that someone with what my surgeon called such a "good prognosis" would still be dealing with numbers as high as these. It is what it is. But I agree you appear to get the biggest bang for your buck with HT
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