Anyone Stage lll stopping AI's at 5 yrs?

Fondak, I had such a sketchy five years with aromatase inhibitors. I had many "vacations", often skipped a day here and there, and ended up cutting the pill in half frequently. I tried all three, and while Femara was the easiest for me it was no picnic in the park.My onc wanted me to stay on one for ten years but when he saw the extent of my side effects he agreed I should stop them. All my joints got inflamed, and joints that are inflamed get weak. I had three surgeries to repair various torn joints and there was no end in sight. I always feel a bit guilty about it because I had very high er and pr and a very high ki-67.

As you can see my Dx is similar to yours..If you decide to stop them, I recommend you have your serum estradiol tested in a lab that does SENSITIVE ASSAYS --perhaps your estradiol is now staying low. Studies have shown that women who can keep their estradiol level in the low teens are relatively safe from recurrence.

Hi Ladies

My dx is very similar to yours. I completed 5 years of Aromasin 2 years ago and then Dr put me on Tamoxifen. I did great on Tamoxifen for a little over a year but the side effects have gotten much worse this past year. Dr wants me to stay on Tamoxifen 10 years, for a total of 15 years!! (counting the first 5 on Aromasin). I cannot do this anymore!

Weesa, Did your Dr want you to take Tamoxifen after you completed the 5 years on AIs?

Ck55, How long does your Dr want you to stay on Tamoxifen? I'm so glad you're doing well on it!

Two thoughts regarding the MA 17 trial results (for duration of AIs 10 yrs vs. 5 yrs):

1)shows that most recurrences were in the other breast. What about us that had BMX?

2)And there was some discussion that the women who even agreed to do the trial were ones that had not had bad side effects the first 5 years!--Or they wouldn't have signed up for another 5 years, right? I sure wouldn't have!! I understand 30-50% of women discontinue AI's and Tamoxifen due to horrible side effects.

I'm just proud of myself that I've soldiered it out for 7 years. I've had bad side effects from all 3 AI's (Aromasin still bad, but best of the 3 for me). Now Tamoxifen doesn't feel like a friend.

My MO told me the opposite! My last appointment was in August, and she had just returned from NOLA where she says the data was clear that 10 years on AI's was beneficial (so long as SEs were manageable).

I was on Tamoxifen for 2 years and expected to be on AI's for an additional three. Then MO said she'd like me to stay on the AI for 5 years rather than 3, and now it's 10 years rather than 5. I'm very lucky in that I tolerate Aromasin very well (except for bone loss, so I get Prolia). I did a brief stint on letrozole before Aromasin and the SE's were horrid... if I had to live that way, I'd definitely consider stopping earlier.

http://www.onclive.com/onclive-tv/dr-tjanheijnen-o...

Large tumour, node-positive and ER/PR+

can you clarify what estradiol is? I was stage 3 c dxd oct 1, 2009. Have been on tamoxifen and AI's for almost 7 years. I have had to have back surgery and a knee replacement. I want to stop. I had no issues before.

I will be out 13 years on March 1st. I have been taking an AI for 12 years and my onc wants me to continue on as long as my bone density holds up. I get a DEXA scan every year. I'm too afraid not to do anything and my onc tells me he is too. Yikes!

Wow. My MO said I should stay on AIs forever. Yep. Forever.

I was told I would be on them forever. I had a hysterectomy to get on the AI and off tamoxifen. My MO says the AI is about 10% more effective than tamoxifan. I figured I need that 10%. I'm approaching 1.5 years on anastrozole... I guess I need to ask about a bone density...

This is controversial, but I don't think it should be. I think the answer may not be completely in, but I disagree with the interpretation of the current available data to mean that women who are stage III will not benefit from prolonged AI treatment. I think it's pretty obvious that for locally advanced disease, we don't know for sure yet. (I don't think the study (DATA) in the link posted above has actually been published yet - will be interesting to see those details).

There was a major study published in the New England Journal of Medicine in July. It was modest sized, done in N. America, and showed no improvement in overall survival for 10 vs. 5y of AI. The problem is that most of the patients were early-stage. They reported the characteristics of their group by the TNM method of staging, not the I,II, III that we see more here, but it's easy to convert if you know your own numbers. More than 90% of the women had tumours smaller than 5cm, about 46.5% had no positive nodes, and another 47.5% had positive nodes, but the nodes could not have been clinically suspected as having been positive (the doctor could feel it or see it on a study) or matted or fixed to any structure. My doctor looked at those study results and had the same reaction I did: they are not relevant for me. I don't fit into the category of women who were studied - they were women who had a much lower risk of recurrence to begin with. Also, the study did show an increase in disease free survival, and a decrease in breast cancer in the other breast, but these aren't considered endpoints that are as important as overall survival.

That's the thing about any study - you have to be sure it answers the question you are asking. My question: For me, as a woman with a strongly ER+, locally advanced tumour with a high risk of recurrence, does extending the duration of AI treatment improve my chance of survival, both over the next few years and the longer haul? The question they answered was "For women with T0-1N0-1 breast cancer (roughly stage I-II), does extending the duration of AI treatment improve survival over a few (5)years?

lack of great, solid data to point me one way or the other, I'm still taking mine at 6 years. I accept there is an increased risk of bone health problems, and probably also increased cardiac risk down the road, but I would take this chance with the possibility of improving my chance of being disease-free in 4 years. Cancer is by far, given my overall health, the thing most likely to kill me.

I'm coming up on five years--July 2017. I asked my onc last week about extending it, because she had always maintained I'd be on letrozole for ten years, maybe longer. At my last appt she said, there's something new--Breast Cancer Index. It's a test they do on a small amount of tumor tissue to determine low risk/high risk for recurrence, and whether or not extended AI is advisable. It's almost always covered by insurance, she said. Mine's being sent out now, so I will let you know.

For me, I'm fine with thirty more years. I like the feeling that there's another weapon I can use against this beast...but my side effects have been minimal.

selizabeth.

I noticed you had positive LN right? What the heck...My Dr told me the BCI test wasn't available for me because I have more than 3 positive LN! ??? Has anyone else wirh positive LN been offered the BCI test? Maybe I'll ask again because that would sure be good info for me to have!

My oncologist said as long as I tolerate it and don't develop a progression/metastasis, I would be on my AI.

Fondak, you might want to look into switching oncologists. My MO was emphatic that I stay on for another 5 years. I don't know what study your MO was talking about, but mine discussed an extensive, well designed, long term study, that demonstrated real benefit from staying on 10 years.

Here's an article that I found interesting: Its interviewing clinical oncologists about the results of the MA17 trial, (5 yrs Vs 10 yrs on hormone treatment for breast cancer)

http://www.medscape.com/viewarticle/864445

My take on this is that the oncologists interviewed didn't see much benefit of staying on AI's or Tamoxifen after the 5 years. ILC tends to recur later than IDC (later than 5 years). And ILC tends to recur in the contralateral breast. Many of the recurrences in the study happened in the other breast. My oncologist said that a prophylactic mastectomy doesn't prevent recurrence totally, but diminished the likelihood of that recurrence a lot.

And there is the assumption that the women who took part in the study did so because they weren't having side effects--or they wouldn't have agreed to an extra 5 years on AI's or Tamoxifen.

So for those of us who have bad side effects from AI's or Tamoxifen I think there is clear evidence that there is very little benefit in staying on these drugs for 10 years and/or a lifetime.

If you are not suffering, then hopefully you can find an oncologist who will continue to write the RX.