​Stage 1, Grade 1, ER/PR +, thinking of refusing AIs

Thank you, Moderators! This is an incredibly calming site, I'm grateful to have found it. I had my 4th radiation treatment today (17 to go -- I'm on my oncologist's version of the 'Canadian' protocol, 21 sessions in all). I feel pretty good so far. The hardest part for me is sleep issues, because I had to stop HRT cold turkey (I've never been a good sleeper anyway, but the sweats are pretty horrible. Neurontin helps, however). The other hardest part is trying to figure out what to do about taking Tamoxifen (or the like) when my numbers are all so low. 9mm lumpectomy, Grade 1, no node involvement, OncolDX a 5 (I realize this means around a 10 without Tamox, but that's still very low). At the moment I'm leaning against it. I'll keep the site updated on my decision and my health. Positive feedback is welcome (negative not so much)! Thanks again! (And to MartyAZ22, if you're still posting here -- what did you decide to do? It's an awful decision to make, isn't it? All best to you.)

Thank you ceanna. I am not in chemo (didn't need it with my OncoDx score of 5) but am in radiation treatments. I previously had post-menopausal bleeding because of HRT (no longer on that, it might have stirred up the cancer to begin with), my mother has osteoporosis and cataracts, my father had terrible heart problems. The SE problem goes beyond the immediate, for me, and is very worrisome. Without Tamoxifen my OncoDX score goes from 5 to 10, essentially, still very low. I've read comments here which state, as a general statistic, that women in general have a 12% chance of getting bc in their lifetime. My MO stated that bc often comes back the longer we live. She is not pushing Tamoxifen on me though. Everyone is leaving it up to me. I'm very confused and kind of fixating on it now! My follow-up with her is at the end of July, after radiation is done. I hope things seem clearer to me then. May I ask, did you choose to take Tamoxifen? I hope you're doing very well, and thank you for responding!

tshembe, no I did not choose to take tamoxifen due to other health issues.  So far no problems but that's not to say I wouldn't change my mind if followup appointments indicate.  I am trying to clean up my diet and environment, not use plastics for food and drink, and use nontoxic household cleaners--all info from other threads on this site.

Sounds like, with your family history, you might want to go to the appropriate specialists for their opinions before you decide.  I know that when I went to my cardiologist, he would definitely put me on a blood thinner if I start tamoxifen. 

I think we all rethink our decisions from time to time.  I'm comfortable with my decision not to take, but continue to read additional information and studies and read at lot of posts on this forum to keep current.  Since we don't know what will happen to us in the future, no matter what treatments we utilize, we can only make an informed decision based on multiple sources of information and doctors.   

I am also leaning towards not taking anything, I had a bilateral oopherectomy and I also eat very well and exercise 5 days a week. I am tired of all the side effects, still have joint pains from the neulasta and neupogen, I have Osteopenia and still have some neutropenia, evnthough my last chemo was April 1, 2015

Cuddyclothes, take in the info and let your inner being help you decide on treatment. What does your heart say?

Uhmm...hello? I realize my post is on the hysterical side, but it would be nice if some of the other people here said hi.

cuddyclothes- I was leaning away from taking AI's because of the side effects, until I did some research. My cancer (IDC), 2+ cm, was 100% ER+ and 95% PR +. Even though I'm low risk per the mammaprint gene test, it seems clear that even a tiny bit of estrogen is risky for me. I had my ovaries removed and have been on aromasin for 7 months. Side effects have been minimal so far - a little joint pain in my right hand and foot - and a little bit of acne (yuck, thought I was over that). It really is a personal decision - I just didn't want to be second-guessing myself if it came back and maybe I could have prevented it. Of course, I'm also a little paranoid as my mother died of cancer at 28, and my father at 54. I didn't have chemo despite the size of the tumor because the MO said it would do nothing to help me in light of the high ER/PR status. She told me that the best thing I could do for myself is to take the AI for at least 10 years, if not 15. There are so many variables involved that it really is an individual decision. you just have to do what's right for you and not look back. Right now it seems like you dont have enough information to make an informed decision.... Best of luck

Thanks so much for your comment. I've been doing a lot of research. I am so sorry about your parents!

My mother had b/c at 65; radical mastectomy, no chemo, no radiation. She's 91. My grandmother had b/c twice: double mastectomy. She lived to be nearly 90. However, cancer is almost the only hereditary condition in my family. The other is longevity.

cuddyclothes, did you get test results yet? I'm one who has been on anastrozole (arimidex) for just under 7 years with little to no SE's. The mild SE's I did have (trigger thumb, carpal tunnel) are gone but they were easier to fight than a recurrence would be for sure. Someone earlier wrote that many of the posters report on their SE's mild to horrific. I think it's because they can get support and/or suggestions to deal with the SE's, while many others stop posting because they are not having problems. My BC is ILC which is the sneaky one so I choose to fight back. Everyone has to make their own decision, without judgment from anyone else. It is a daunting task and one you have to make sure you are comfortable with as stress is also not an option for us.

I'm not quite sure how this works - my oncotype test results came back today and I'm a 3!

Do you have an appt to discuss with your MO? She would probably have to give you a good, STRONG, reason to do chemo or hormonals with such a low score. Yippee for a 3!

I am so sorry about your sister!!!! The system is tremendously unfair. I take quite a few meds now and sometimes the prices are so high I am simply astounded. There's only one drug where I can't take the generic, so I was switched to a different drug where I can. Depakote - Lamictal.

Girl53, hoping for low Onco score for you and no chemo. You are correct that many of those without SE's don't post and the ones who have them need our support and a 'safe' place to rant. I'm one of those who had no significant SE's on arimidex/anastrozole, almost 7 years now. Many others found that uncomfortable SE's eased up after a short time. Some others are pushing through despite discomfort because that is what they have decided to fight with and then others have tried other manufacturers or a different AI altogether.

Hoping your journey will be uneventful and this new normal will work out well for you.

Hi Camc7444 and welcome to Breastcancer.org!

We're sorry you have to be here, but really glad you found us. We're sure there are many members here who can weigh in on your situation!

You may also want to try posting in the DCIS forum to talk with others with a similar diagnosis.

Looking forward to hearing more from you!

--The Mods

jdavis,

Have you considered tamoxifen as an alternative? I also have osteopenia and high risk of osteoporosis due to my family history. I discussed this with my MO and she prescribed tamoxifen for me instead of an AI. Tamox can be taken by both pre and post menopausal women. She said in my case, the AI only offered a 3% difference in reducing the risk of recurrence. That small difference just wasn't worth the side effects, joint pain, and risk of osteoporosis with the AIs. So far I am tolerating the tamox well.