How Many are doing 10 years on Aromatase Inhibitors
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Well said, Patoo - like so much else when it comes to cancer, it all finally boils down to you, your MO and your gut. Even though we came to opposite conclusions, each of us made absolutely the right decision!!!
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Beau, I switched to Tamoxifen back in 2012 after my 5 years of Femara. So happy to be off that stuff! I have much less stiffness and joint problems now. Plus I am able to use Vagifem for the dryness we all know and love because if any estrogen sneaks into my system (which is highly unlikely) the Tamoxifen will block it from attaching and encouraging any bad cells. So wonderful not to be having monthly UTI's!!!!!!!! I would take it for the rest of my life, but I don't think my MO is going to go for that.
Cyndi
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NatsFan my MO said they haven't released any info (which probably means nothing significant to report yet). It does seem that those of us with large tumors and/or node involvement are getting the recommendation of 10 years.
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lago, may also be the reason for those of us with ILC as well (not sure but that was my MO's reason).
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Iago - that's exactly what my MO said - I phrased it too loosely in my post. No info from the studies have been released, and my onc made the same point that others have made - if there were any kind of significant findings shown, they'd release at least some preliminary info. The fact that no info, not even preliminary info,has been released probably means that there's nothing significant to report.
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patoo you are correct about ILC. When I discussed this the 1st time with my MO she told me I was high risk due to tumor size but then she mentioned also that since I was ILC that was a risk factor… that when I asked her who the hell is she talking about. I was never told I had ILC. Sure enough there was an error in my chart. But yesn my understanding is ILC has a slightly higher risk of recurrence.
NatsFan We also don't know how much time has passed since they finished the 10 year course of AI. I will be asking my MO that question in April when we discuss this again.
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Hi Cyndi
I am very interested to hear about the fact that you have gone from AI to tamox with such a positive result. I am interested also in hearing about the results of the studies of 10 years on AIs, but not sure if there will be info on the studies shortly (and I am on my 5th year now). When I first started AIs, my onc told me not to get fixated on 5 years as I might be on something longer. My original thought process was that after 5 years on AI, I might switch to Tamox. My theory at the time was that after 5 years, the toxicities of AIs would be "switched up" for the negatives of Tamox. So maybe, in the long run, my overall health would be better. Of course, now at the end of 5 years on an AI, I do have some thoughts about "don't fix what ain't broke". In any event, I thank you all for adding your advice and experience to this thread.Help me a lot!
Best
Beau
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I do think your gut is a big thing! When my Onc said, "You will be on an AI for 10 years, plan on it" I felt nothing but relief!!
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ILC has the tendency to recur in later years, rather than earlier, but not necessarily a higher rate of recurrence. That's why the 10 years on AI or at least Tamoxifen (if you can't tolerate the SE from an AI).
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I will be hitting my 11 year anniversary next month and will continue on with the AI's indefinitely. When I think about it, I'm not sure what would make me stop them at this point.
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Jillian.....do you have any se's? Wondering if you don't have them at the beginning will the show up later? I've been on AI 1 year and aside from a few aches I'm doing good.
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- Hi, Jillian, I will be on Aromasin for 10 years in April! I took a break from it for about 6 months, but then went back on it when I moved to California!! I will be 11 years out in November!! I see my onc next week, and I know she wants me to continue on Aromasin until April, but will ask her if I should stay on it indefinitely! It has kept the cancer away, side effects are tolerable!
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Nash54, I have been fortunate as far as SE's go. For the first couple of years I had some joint stiffness but that has been gone for years now. That's about it for me.
Kindergarten, we were diagnosed just 12 days apart! I have taken 2 to 3 month breaks over the years and my onc is fine with that. There is a study in some country where you are on an AI for nine months and then off of it for three. I asked my onc about it but he didn't think it sounded like a good idea. He wants to see the study results.
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Well just found out today that dexa shows osteoporosis beginning in spine so will be discussing with MO in couple of weeks if should switch to Tamox instead. It's almost 7 years on anastrozole so if I do have to switch to tamox and no major SE's then will still be in for the long haul (and beyond, maybe). Maybe between the two I will take a vacay though not sure that would be a good idea as don't want the body to think it's free and get mad at me when startup on tamox! Will see.
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Hi All,
I see my onc on Monday. I am 5 years out from my original diagnosis (yeah!) so I am anxious to talk to him about what to do going forward. He has already hinted that he wants me to stay on something so now the question will be what - AI or Tamoxifen. I feel like I need a break from the arthritis and vaginal atrophy and am hoping that he thinks that a switch to tamoxifen might make sense. He is a wonderful onc at a major chancer center so I will listen to him carefully. I will circle back here to let you know what he says!
Have a great Halloween!!
Beau
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wow, Jillian, interesting study, on nine off three!! Thanks for sharing!
Patoo and Beau, thoughts and prayers in the decision process of which inhibitor to take!! Keep us posted!!!
Have a wonderful weekend!!
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For those of you considering 10 years.... This was shared on a different forum, very educational, it may have been shared on here before. Watch the video, and for those of you that were node negative or N1, you might want to show your oncologist and consider the test, it can help you decide if continuing an endocrine drug would be helpful or not...
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Thanks lago. My PCP just mentioned tamox but punts to my MO to discuss with me which other AI I might try.
LindaKR, thanks and will take a look at that link later today. I'm finding many posting here are IDC but I'm ILC which is the sneaky one that does not normally show up and so that is why, since I have no SE's, I have no problem staying on for the longer term. Yes, my bones may have suffered a little and my cholesterol is elevated somewhat, but I think they can be addressed as those SE's, IMHO, are a lot easier to fight than a recurrence locally or metastasize of BC. My PCP is absolutely thrilled with my labs and lifestyle otherwise.
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Hi All
I met with my onc to review what to do next, if anything, after being on an AI for 5 years. He wants me to start by taking a break - yeah! He says there is no data yet on whether people benefit from being on an AI for more than 5 years, but he expects that there will be some data coming out within about 9 months or so to give him and me more information. He thinks my body deserves a break - no argument from me! After a break, we can look at whether I want to stay on something - tamoxifen or AI depending on whether I feel enormously better after the 3 months and want to try something different. Or, he advised we can play "catch up" and go back on something when the data comes out if it is compelling for folks like me - node negative, etc.
I did ask about the BCI and PAM50 tests that have been mentioned on this site. He said that those tests primarily determine whether cancer is highly proliferative (luminal
and ER+/PR+ scores. He said with my Oncotype score of 26, high ER+. PR-, those tests would not give him any new infornation or change his recommendation for treatment. Basically, he thinks my cancer is luminal B which I kinda knew already from what I had read on this site and also the fact that I had chemo. 
One powerful (and slightly depressing) point he made was that even knowing that a person has luminal B and a higher rate of recurrence, we do not yet know if extended therapy helps in any way reduce that threat. At least for someone like me with ER+/PR- cancer that theoretically might get less benefit from being on an AI to start with. In other words, the jury is still out on whether I should continue. Do folks agree with that?
I feel really grateful to have made it to 5 years and I am really looking forward to the break! Would appreciate any thoughts/words of wisdom from folks.
Best
Beau
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Jillian777, the trial you are speaking about is the SOLE trial, whereby you need to meet the following criteria:-
Have had hormone sensitive breast cancer
Cancer also detected in nearly lymph nodes
Had hormonal breast cancer treatment for at least 4 - 6 years prior
Completed menopause
Been free from breast cancer.
After the initial 4-6 years of treatment, you then continue to take Femara for another 5 years, with 9 months on medication and then take 3 months off medication.
My friend has been on the SOLE trial and is at the end of her total of 10 years of treatment with no recurrence. She found being on the SOLE trial for the additional 5 years very easy and had very minimal side affects of this 9/3 program. We are now waiting on the results of the SOLE trial which we are hoping to be out in the next 6 months or so.
Ched
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I see my oncologist today - for the 5 year check up. I'll let you know what we come up with. I like the 9 months on, 3 months off thing. Thanks for the info.
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Hi, Everyone!! I saw my onc today!! I will be on aromasin 10 years in April!! I asked my onc what is her opinion on staying on it for longer than 10 years! She wants to see me in April and we will decide then after blood work and another bone density scan!! She also wants me to have a complete physical with my Family doctor!! Thanks for all your info!!
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So I saw my oncologist yesterday, for my 5 years of taking AI appointment.
Things still looking good - appear to be NED still. Yipppeee! 
I'm definitely in the stay on the AI for another 5 years, or longer group - no question about it.....and he doesn't really want me to even take a break. I said I would like to know how much of my pain, fatigue, depression, night sweats, etc... are attributable to the AI and how much are due to something else, so he agreed to a 4 week break, possibly 5 weeks. I kind of wanted to go off it until after my daughters wedding on January 2nd, and he said he would agree, but really wasn't for it. Of course my husband and parents are saying don't even risk it by taking a break, makes life fun. Anyway, in the next few days I'm going to start my break and according to my MO he said I should really know within 3 weeks whether or not it will make a difference. He also said that only about 10% have as severe issues as I do. 0 -
Congrats, Linda. I am looking forward to my 3 year mark. Go us!
I want to share with you my experience with AI-induced arthralgia. It is real and you can do something about it. Here's the skinny:
I started suffering from AI-induced arthralgia about a month after starting therapy. After one year, with my doctor's guidance, I stopped the medication for 3 weeks to verify the correlation to the AI. It was a very clear answer, so much so that all pains went away for the weeks after I started the medicine (switched to Letrazole after Anastrozole) up again, then it came back even worse. Knowing it was reversible was consoling, but I wanted relief before I opted out of taking it altogether. I found acupuncture to be a remarkable solution. I highly recommend it to any suffering from this debilitating side-effect (I couldn't dress myself, walk or exercise normally). Find a practitioner that works for you, it may take a few tries. I found mine at the Integrative Medicine center at Memorial Sloan - Matthew Weitzman and Jonathan Siman, in particular. I am indebted to them. I can now continue to comply with my doctor's recommendation to take AIs.
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Dear deenaoren, Welcome to BCO and thanks for sharing your story. We are grateful for the support and information shared here. We hope that you will stay connected and keep posting. The MOds
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deenaoren Thanks for the info - I live in a rural part of Oregon, there are acupuncturists here, but....? I'd like to know if there is a certain protocol or something that I could ask the accupuncturist to help determine if they can help me? Thanks!
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Thanks, Ched! Yes, that is the study I was talking about. It just makes so much sense to me. Thanks for posting the criteria and great news about your friend who has been participating in the SOLE study. I will watch for the results of the study.
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I mentioned the SOLE study to my MO, he said that logically it shouldn't work that way, so until there was enough data he wouldn't consider doing a 9 month on, 3 month off protocol. He felt it would raise your risk of recurrence and resistance to the drugs.
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Raise risk of resistance to the drug - Yikes! This is first time I've ever heard that we could be/become resistant, again I say - Yikes!
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