Anyone Stage lll stopping AI's at 5 yrs?
I was surprised and concerned when my oncologist told me that I would come off Aromasin this spring. She had originally told me that I would be on it for 10 years. She said new studies show that the extra 5 years didn't make a difference. What are you ladies doing? I saw some posts on another thread but was especially interested in hearing from others with a Stage lll diagnosis. I don't think I would feel as concerned if my was caught at an earlier stage and I wasn't 95% ER+. I see really encouraging stories and I've had in my mind that an aromatase inhibitor was a contributor to some of that. I'm not sure what to do.
Comments
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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.
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I am on Femara until September and that will be my 5 years done. I am then to go onto Tamoxifen. I am also very high er - 8/8. I will clarify why I am not staying on Letrozole when I next see my BS.
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Thank y'all so much for responding. Weesa I have never heard of the serum estradiol testing. Thank you for sharing that. It's always good to see your posts. You've been a huge encouragement to me!
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I did Femara for 5 years and just could not stand the side effects anymore; especially the personal dryness and frequent UTI's. My onc let me switch to Tamoxifen which means I can use the estring which has solved my two main problems. Also no more joint aches! Feeling really great on Tamoxifen. I will stay on it forever if she allows me to. 😀
C
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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.
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Chiming in here - my onc is refusing to renew my Arimidex prescription this year as I've been taking it since December of 2006. I am terrified of flying without a net, even though he also cited the same study which says it's probably not doing me any good by now. I'm counting down my last pills as if they were diamonds, and wonder if getting a second opinion would be counterproductive. I've become so used to the stiffness, etc that it's simply become my "new normal"....not sure how different I would feel without Arimidex as I'm also 61 years old (so age COULD be a factor!)
Will be interested in other takes on this...
Julie
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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.
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I don't think I saw any data for various subtypes, I'd be interested to see that. Came across results of a study earlier today that said patients with large tumours and both ER and PR positive received significant benefit from extended therapy. Let me see if I can find it.
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http://www.onclive.com/onclive-tv/dr-tjanheijnen-o...
Large tumour, node-positive and ER/PR+
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Thank you so much for this discussion! Just had my almost six year check up this past week and was very surprised that my MO said he wanted me off the Als ( as I just completed my 5 years). He sighted a study that stated it would be of no more benefit for me after 5 years. Was very surprised as we had always agreed that I would stay on Als for 10 years. I had a grade 1, 95% ER,PR positive BC and have always known that I would need longer treatment due to my reoccurrence rate being further out then 5 years.
I refused to discontinue the Als and gave my reasons. He's use to me questioning and sighting my research, but I was truly not prepared for him pushing me to stop my Als. I see a BC specialist who will support me in getting the Als if my MO won't, but its of a concern that new studies no longer support longer use. Thank you for info posted and will be researching further myself. I believe in integrated oncology and have changed up a few of my holistic things after 5 years, but always planned on the Als for at least 10.
Thank you again for posting this topic and hope others have insight as I really thought this was a settled issue of 10 years of Als for us stage 3 people!!
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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.
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foobs, I don't know how long my onc wants me on Tamoxifen? This coming August will be 5 years on Tamoxifen after my 5 years on AI's. I would guess she might have me stay on for another 5. But, like I said, I will stay on it forever if she lets me. Very few, if any, side effects.
Good luck with all this craziness! 😱
C
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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!
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I have now been on Femara for 9 years. My bone density has dropped dramatically in the last 2 years and I have been told by 2 oncologists, that they want me to do a total of 10 years on treatment, and I will probably have to start Tamoxifen next month as they are concerned by all the bone loss.
Ched
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Wow. My MO said I should stay on AIs forever. Yep. Forever.
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Reflect, yep, that is exactly where I am, too. I have been on an AI for 12 1/2 years now.
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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...
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The PA I saw at my six-month check this week told me my MO was reconsidering her recommendation of 10 years (which she'd discussed with me at my last appointment, as I mentioned above). She attended the BC Conference in San Antonio in December and was less impressed with the data on 10 yrs. vs. 5 yrs. So it seems the info is ever-changing.
Personally, I'll be glad to be done with them just so I can feel like I'm DONE, but I'll take them as long as my MO recommends.
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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?
So,given alack 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.
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Hi Ladies
I took AIs 5 years, Tamoxifen the following 2, for a total of 7 years. I quit taking Tamoxifen 5 mos ago after reading the MA17 trial results. My MO and I talked about the study results and my worsening side effects. MO agreed that there was very little benefit to staying on these drugs longer but said it was my choice. MO has always been conservative and wary of my positive LNs, etc. and will still continue to see me every 6 mos.
Maybe --big maybe-- I would stay on these drugs longer if the side effects weren't so life altering for me--fatigue, intense hot flashes with anxiety followed by weakness, insomnia, and depression. My quality of life is improving since stopping 5 months ago. I'm at peace with my decision and I know I've done everything humanly possible to safeguard my life. I realize a recurrence wouldn't be pretty but I feel like enough already! If I have a recurrence I'll still be ok with this decision today. Everyone gets to make her own decisions and I respect anyone's decision to take these drugs for life, I just can't do it when it makes me so sick and affects my quality of life.
By the way….if you're wondering (and I know you are) hot flashes have decreased from about 25 a day (including nighttime) to around 8 normal hot flashes. They're not 'mental illness hot flashes', they come and go and I can actually function. I'm happy again and feel a mental 'lift'. I feel like my brain is working again. Fatigue is so much better and I'm actually sleeping at night. I feel like me again. Tamoxifen was hard for me mentally. Aromasin was difficult because of joint pain and fatigue.
I wish for all of you the best outcome whatever your decision and that includes many happy active well-lived days. And peace with whatever you and your MO decide.
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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.
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My clinic phoned today and said they want me to come in to discuss my move onto Tamoxifen. It was a bit of a shock as my 5 years is not up til September when I started it - 2012. I had a brief conversation about why i should be off Letrozole and she said the side effects will increase for you and I said do you mean bone loss (already osteopenic pre- bc) and she said yes.
So, I am to make an appointment to switch. I feels ever so nervous about coming off Letrozole
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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!
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Foobs, yes, I had 4-6 positive nodes. My onc didn't say anything about BCI not being effective for lymph node positive women.
Here's a quick copy/paste of a sentence from the BCI website:
- For N1 patients: Risk is calculated by combining this BCI gene expression signature with tumor size and tumor grade
And here's the American Cancer Society's definition of node criteria:
- NX Regional lymph nodes cannot be assessed (for example, previously removed)
- N0 No regional lymph node metastases
- N1 Metastases to movable ipsilateral level I, II axillary lymph node(s)
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My oncologist said as long as I tolerate it and don't develop a progression/metastasis, I would be on my AI.
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I just got back from my appointment and I was really disappointed at my oncologist's unwillingness to discuss continuing on it. First thing she said was....Well, only 3 more months on your AI! I told her I wanted to talk to her about it. She said...We have a study saying 10 yrs is no better than 5 yrs. I explained I felt uncomfortable with discontinuing it as I was expecting 10 yrs and wonder if that is why so many are doing well 10 years later. She just said.....No, it's not.
I asked if the study was for women of all stages or was it with women who were stage 3. She looked very frustrated and said....all stages. I explained I would feel better if it was a study addressing stage 3. She said....They probably broke it down but I didn't check. I'm sure if I did it would all be the same.
Last visit, she said I would be going on Tamoxifen in June but now she said I won't be getting anything. I will be completely finished with all my treatment and I was 95% estrogen positive.
I might have felt somewhat better (about her being so convinced) if she could at least tell me more about the study or where I can read it but she totally shut me down.
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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.
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"...she totally shut me down."
Well, wow. I'm with pupmom. Find another oncologist.
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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.
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I really appreciate all the input here. It's been very helpful. I felt like perhaps I was missing some big revelation about 5 years rather than 10 years. My first 2 years on aromasin were tough but I've adjusted well over time. I do get a little achy at times but it's no big deal and I am getting older and should be exercising more so that could be playing into it as well.
I did get an appointment with a doctor in Atlanta who has a great reputation in the field. It will be well before my prescription runs out in June so I'm looking forward to seeing what his thoughts are.
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