How Many are doing 10 years on Aromatase Inhibitors
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Hi Ladies, a question on how can you get BCI results when the cancer was removed many years ago. I wonder how can I ask for this test.
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I believe they use your original pathology to do the test and you ask your oncologist to order it after being on the meds for 5 years. My oncologist was new and ordered it right away for some reason but that is not normal protocol.0
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LillyIsHere -- Your cancer tissue is kept for a minimum of 10 years so check with your doctor. It's recommended to get the test at year 5 since it tells you the benefit of CONTINUING your Tamoxifen or AI for another 5 years.
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Hello,
I am not sure how often this string is checked, I finished 10 years of anastrozole in November. My oncologist does not support taking after ten year mark. I don't experience many side effects when taking it..so it was bittersweet to discontinue.
Is there anyone that continued after 10 years, and if so, your oncologist's reasoning?
Thanks in advance for anyone who reads this post!
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One of our BCO sisters, Sugarplum, posted that she convinced her MO to allow her to continue after 15 years.
I'll be at 10 years in July this year. I wish I knew what to do.
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I'm amazed to find this thread that was started in 2013?? I thought this was a recent study that stated it would be beneficial to extend to 10 years for some women. I am going to talk to my MO about the BCI test, but just like sbelizabeth and 4My3kids, I have had little (thinning hair) to no side effects with this drug, so I'm also a little nervous about stopping it. It's like a security blanket. I've been on it for a little over 7 years
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Thank you Peregrinelady and Lala1. My tumor was 3 mm and I donated for research studies. I believe the lymph node cancer was donated too. I'm not even close to 5 years. I finished 2 years and now I am in 1 month vacation because letrozole SE were getting worst every month.
Has any of you any experience with taking a medication vacation and for how long? I'm nervous to be without medication for a month even though I feel so much better already.
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@ HomeMom
I believe BCI is only for those who had no more than three positive nodes.
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Muska is right. My MO tried to order a BCI for me, and because of the number of involved lymph nodes, it was refused.
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I was on Arimidex for 12 years and tolerated it well. I fought to stay on but was told that with the chemo and radiation I got that it would be too much riskfor my heart. Now I have been dx with heart issues. So, in hindsight, I was glad to have stopped it when I did.
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Thank you for everyone who responded. It's hard. I have trust issues with medicine and science. Since the protocol for ten years is new, how do we know that more time isn't better? Especially in younger survivors? I am going to review with my surgeon at the end of the month. He is more old school, and last time we discussed he said to keep taking if my bones are ok. I have osteopenia...so I guess that is not "ok"? It has remained stable with diet and vitamins...but also do not want to suffer from compression fractures later in life. My oncologist also said he did not believe a study would be done to research beyond 10 years. I don't get that...there is a study for everything.
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I’m waiting on my BCI results with trepidation . From what I read the report doesn’t extend beyond 10 years for extended hormone therapy. At some point, the test may be powered to do that.
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t think there are so many of us living beyond our original prognosis that they just don’t know yet. I was told 3-5 yrs and just had my 15th anniversary. They actually study my case in teaching hospitals. We will give them the information they need for those coming behind us.
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pip57 - That's wonderful that you've had 15 years. You're the first I've heard of anyone having been given a time frame like 3-5 years. They really told you that?! I'm very curious about this because I am a stage 3b, grade 2, ER/PR+, HER- person also. I was never told any sort of actual time frame possibility, but I've made it to the 3 year mark at least. Wow, I'm just so surprised to hear that as actually recent as 2007, they saw 3b as a 3-5 year thing. I haven't seen on these boards where people have been given a time frame, except for you. I'd be real interested to hear about or from others who were actually told X number of years or months, given their diagnosis.
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There were other factors to consider too. Even though only one spot showed up on screening, my breast was full of tumours. Lymph nodes in chest were also positive. I was also 100% ER/PR positive. They assumed it had travelled so possibly stage 4. I had a no nonsense oncologist and she gave it to me straight, which I asked for. I’m one of those people who learn everything I can about my health concerns. My tx was very aggressive.
Things are quite different now and there are more long term survivors.
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pip57 - Yes, I never did outright ask anything like that, but looks like you did. I'm used to seeing all those statistics about how likely it is that a person with a given diagnosis will make it 5, 10, or 15 years. Haven't at all seen the essential opposite, e.g. "you likely only have X years" available. I do understand that other factors can play into it like you said. Fortunately I didn't have any node involvement and it was only one solid tumor, although it had started to ulcerate and it was stuck to my chest wall. I am also 95+% ER/PR positive. I did get the impression though, in my own case, that some of the doctors, some of the time, have just assumed that it must be stage 4 that isn't detectable yet, so I get what you are saying about that. Who knows, maybe they're right.
Again, I'm just so glad to hear that with what you were told, you have had these wonderful 15 years! Here's to many, many more! I'm inspired.
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Lilly, my MO said recent studies have shown that hormonal therapy vacations are safe. I can't remember the name of the researcher in the US studying this. If found a few studies confirming this.
(https://www.medpagetoday.com/hematologyoncology/br...)
https://www.breastcancer.org/research-news/treatme...
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Thank you momwriter. It seems that hormonal therapy vacations are safe on the second 5 yr term of taking this medication. I only have 2 years on letrozole. I wonder if anyone else had long vacations during the first 5yr term.
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Just turned 52 and started my AI about 16 months ago. Stage 3a, ER+/PR+/HER2- I was told that I will need to take Anastrozole (or another AI) for the next ten years right from the start due to my tumor size/grade/and 4+positive lymph nodes with lymphovascular invasion and extranodal extension. My tumor was 7cm and 90% hormone reactive and I had some DCIS as well. 3 of my lymph nodes were micrometastatic and the others micro. My oncologist said there was no need for the BCI test after 5 years because of the number of nodes involved and I should plan on at least ten years and see what happens after that. It's been going "okay". Some days I feel fine, others I feel like I am ninety with joint pain and it's difficult to climb the stairs. I try to keep moving as much as possible and that seems to help. As much as I hate the pill, I think giving it up will be hard as I was initially told without it my risk of recurrence would be 23% and that is quite scary! Like others have said, it becomes like a security blanket for us! Sending good vibes to all
.Cheers,
Sabrina
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I'm wondering the same as LillyIsHere. What about the first 5 years? I had read results of that SOLE study too previously and thought it was hopeful, but it only looked at people who'd already done 5 years of 2.5 mg of letrozole every day. Doesn't help a lot of us all that much. I think in one of the articles Momwriter posted (thanks Momwriter) they said that resistance appears to start developing at around a couple of years. If breaks during the first 5 years might help with the development of resistance, among many other things like quality of life, it would sure be good to know. Why do they do so many studies on people after the first 5 years? A lot of letrozole study info came from studying those who'd already had Tamoxifen for 5 years and then took the AI. Why not start with the AI and during the first 5 years? I'm no scientist, but there's a lot of this that certainly on the surface level and from what seems like a "common sense" perspective, just doesn't seem to make sense.
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That's a bummer about the lymph node involvement being a consideration. Two of my nodes had a "speck" in them. My surgeon told me at the time of my diagnosis that 5 years earlier, they wouldn't have counted them. Oh well, better to be safe than sorry I suppose
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Hi 4My3kids, I recently passed my 10-year mark on hormonal therapy (5 on Tamoxifen and 5 on letrozole) and I've decided to keep taking the letrozole for the foreseeable future. My MO said there was no proven benefit to keep taking it but as long as my bone density wasn't horrible, she would agree to leave me on. I had a very aggressive cancer, was pretty young at diagnosis, and feel safer taking something to prevent recurrence. I have mild osteopenia but it hasn't gotten worse since my last scan. It's a tough decision with lots of factors to consider. Do you have faith in your current MO, or does it make sense for you to get a second opinion?
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@kerri72 thank you for your response. I do have faith in my MO which is why I followed the protocol and stopped. I am trying to feel reassured by his opinion but two months into discontinuing I am wondering. I plan to address with my breast surgeon later this month and get his thoughts and experience with other patients. At one point my surgeon said what your doctor did…stay on if your bones are ok
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Has anyone had issues with hair thinning on Arimidex, and if you did, did your hair improve after stopping? I've been on it for 7 years and will be on it another 3. My hair mass has thinned out all over my head, and I already have fine hair. I miss the volume of having a lot of hair.
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@HomeMom. I completed 10 years on Letrozole over a year ago. My hair certainly thinned during those years. I was really hoping that my hair would thicken up by now, but NO. I have tried various shampoo, etc regimens for thinning hair. Nothing seems to help. So frustrating.
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My hair has always been thin but it has thinned out considerably these past 5 years. I’ve moved into wearing hair toppers and wigs. Baseball caps are also my new best friends.
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4My3kids, I'm glad to see that your cancer was Grade 1 and not found in any of your nodes. Mine was Grade 3 and had spread into multiple nodes, which is a big part of why I'm staying on hormonal treatment past 10 years. I would feel more comfortable coming off if my cancer had been less aggressive. Hope you have a good visit with your surgeon.
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So the thinner hair is a permanent reminder.... awesome
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I've not been on these boards in a while--been living my life which included moving from the US to the Netherlands. I am finishing 10 years on Letrozole. For years, I've been told I'd be on it for 10 years or life. Now it's time to make the decision of whether to be a "lifer" or not, and my MO here in the Netherlands has given me the choice. My bone density is borderline osteopenia, so that is not a reason to go off of the medication. My MO is concerned about possible cardiac side effects of Letrozole along with my other risk factors and family history for that. Like others of you, my MO has said that there won't be a study about use after 10 years--there's just not enough women. This is really the first time I've been given a decision in my treatment, and it's not easy. I thought I'd come here and see what others in the US are doing who are in my situation or similar.
The MO said that he would call in a month to ask for my final decision. I decided to stop for the month, see if I noticed feeling better in any way (I've not had side effects in years), and research this before making a final decision. I'll call the month a medication holiday and resume Letrozole, if that seems to be the right decision.
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