• breast cancer and arimidex treatment

    Asked by happygirl on Friday, March 15, 2013

    breast cancer and arimidex treatment

    I am stage1 clean margins and nodes. Estrogen positive and oncotype 19. I agree to radiation and had first week. After treatment they want me on arimidex for five years. I am post menopausal. My recurrence risk is 12% and from what I have read with side effects I am not sure if I want this treatment. My question is has anyone out there not do this treatment and how long has it been?

    14 Answers from the Community

    14 answers
    • gwendolyn's Avatar

      If I were you I would consider how you will feel if you don't take the recommended arimidex and do get a recurrence, especially one that is metastatic. Also, I'm wondering why you are considering not taking it without even trying it first. You don't know what/if side effects you will experience.

      over 3 years ago
    • Debbie's Avatar

      I've been on arimidex for one month with absolutely no problems. Like Gwendolyn said, everyone is different so don't let the "horror" stories sway you. Best of luck with your decision.

      over 3 years ago
    • nancyjac's Avatar

      I have been on anastrozole (generic for Arimidex) for almost a year with no side effects. I wouldn't put much stock in risk statistics. They are all based on old data and other people's cancer. The bottom line is, the only point of taking an aromatase inhibitor such as Arimidex is to prevent estrogen from encouraging cancer cell growth. The stage, oncotype score clean margins, no node involvement and radiation are all irrelevant to taking or not taking an aromatase inhibitor. The only relevant factor is the your are ER+

      over 3 years ago
    • karen1956's Avatar

      I took AI's for 3 1/2 years and quit due to side effects...BUT please know that some gals have NO side effects at all or they are mild....You can always try and then styop if it is not good....For me I kow that I gave it my all.....

      over 3 years ago
    • JennyMiller's Avatar

      I have been taking Arimidex for 9 months and doing fine. I may get a little bone pain early AM - but when I get up and move around, it subsides immediately. I personally feel that we have to use every available weapon to fight this evil and elusive enemy -- so that we have no regrets later. I wish you the best.

      over 3 years ago
    • Nellie's Avatar

      My onco dx score was 19 also and I'm ER+. I take tamoxifen and I too worried about side effects. I have been on it for 2 months now, so far so good. i do get hot flashes every now and then. i would at least try it, goodluck to you!

      over 3 years ago
    • Gabba's Avatar

      I have been on Arimidex for a little over two years (stage 2A, clear margins, radiation, no chemo based on oncotype score)...I did have terrific hot flashes in the beginning...like a second menopause...but they have subsided...I get some joint pain, I take a Tylenol if really bad...I have developed trigger fingers but with hand exercises I can control the discomfort and my grandchildren think I am the coolest with my "curvy" fingers (does not interfere with work, sewing, etc.). ..here is the bottom line...I was STRONGLY estrogen positive, why wouldn't I take this little pill...the way I look at it is if I am having side effects it's because IT'S WORKING to suppress my estrogen levels. There is something you can do for almost every side effect and no one gets every side effect...I could not live with myself if I had a recurrence and had not at least tried an AI.
      Good luck, you will make the right choice for you...be sure to let your oncologist know your dilemma.

      over 3 years ago
    • DianaL's Avatar

      I started on Arimadex last August and took it until February. However, I have osteo arthritis and had to come off my Relafin for two weeks before and after breast reconstruction started. I got to where i could hardly get up and walking was difficult to walk. My doctor changed me to Tamoxifen and so far so good. A few hot flashes and that is it! I would not hesitate to take any of these drugs for ER+ breast cancer. If and I say if, you have really bad side effects there are many more out there to try! Side effects are different for everyone, so please do not take a chance on recurrence--it is not a place I would want anyone to ever go to again when a little pill can keep it away!

      over 3 years ago
    • leslie48240's Avatar

      Happygirl...like the others here, I would encourage you to try the Arimidex. I had a couple side effects that were keeping me from getting a good nights sleep --- that in turn, was keeping me from the life I want (being a loving wife, being able to watch my grandaughter, being in my usual good mood, being able to move around easily). I compromised by cutting my pills in half. So far so good...but has only been 4 years since started Arimidex. My oncologist says I should stay on Arimidex 'forever' as I was stage 4 BC, metasticized to spine and liver. Can't be sure this will work to keep the big C away...but at least I feel like I am trying and still living my life the way I want to now. I repeat and stress...everyone reacts differently to these things. For instance, I never got sick from 18 months of Chemo and it got rid of all my tumors! You just never know! So try it first...then look at options! ps...my Dr does NOT approve of this 1/2 pill program.

      over 3 years ago
    • jad's Avatar

      I will be going on an aromatase inhibitor soon, as I have finished my chemo and am almost finished with my radiation. I, too have concerns about side effects. But I keep reminding myself that people post here usually when they have concerns (aka side effects). I suspect there are people who don't post because they have no, or minor side effects. That's the thought I am holding to help quash the anxiety about yet another problem.

      over 3 years ago
    • Ajfunstuff's Avatar

      Happygirl, Research all your options and make a choice. Gwendolyn laid a guilt trip on you to think about possible future regrets and you don't need negative advice. You must stay positive. The whole journey of having breast cancer brings all of us to many crossroads from how we pick our doctors to how we want our treatment to go. For me, there was no way I was going to take the Anastrozole/ Arimidex. Possible side effects found on PUBMED said it can cause traction of the eye yet "vision problems" is all that was listed in the handout given to me by the oncologist. Since I have two retinal issues in both eyes that put me at high risk for blindness, that drug could cause traction of the eye and I told the doc I'll fight cancer twice but not as a blind woman. That said, it is different for everyone. I don't know my chances for blindness or cancer recurrence; no one does. I had Stage 1B in both breasts (two primary ER+ cancers), surgery, no node involvement, radiation on one side, mastectomy on the other. While docs like to quote stats, and my doc didn't like my decision, it was mine to make. Educate yourself to empower yourself.

      over 3 years ago
    • nanc's Avatar

      I have been on Arimidex for over five years now and was feeling that finally this was something I could take off of my "pills everyday" agenda. After attending a "cancer survivor, thriver" event, I learned that taking Arimidex, if it is not causing, especially bone problems, is something that is being recommended even for up to ten years. Research changes and so do responses to the drugs and I am so grateful for the teams of educators who are constantly working to not only keep us alive longer, but to keep us thriving! It was explained that at least yearly checks with your oncologist were advised, but if it's working, keep letting it do it's job. I had a reoccurrence after 4 1/2 years while taking Tamoxifin and it's been over 5 years of taking Arimidex and I'm feeling GREAT! I refer to it as "my staying alive pill".

      over 3 years ago
    • AlizaMLS's Avatar

      Hi happygirl,

      Hi, I'm Aliza, a BC patient, like yourself and also a Medical Librarian (retired) who offers advice (non-medical) research (medical and non-med) and referrals to folks on this site and elsewhere. I read your profile and I'm able to speak from my own experience as a BC patient (as well in other cases of other cancers, as the experiences of other friends' and family I know [we number too many]).

      I'm Stage I as well. I had a Mastectomy. My Oncotype was 8. I was lucky in that I didn't need radiation or chemotherapy; it wouldn't have benefited me. I'm on Tamoxifen because I'm perimenopausal (I'm 54) and when I reach Menopause, I'll be going on one of the aromitase inhibitors.

      There is no free lunch. There is no fairness in life. I watched 12 years ago as a close friend of mine died from this disease. Today, after losing track, I've located her daughter and we're going to get together for lunch soon. And I now have the same disease that killed her mom.

      Tamoxifen has side effects as well. I know. I've got three friends on it. One reacted badly. The other two are fine. You can't take a poll here (well you can but it's hardly scientific) to base how you should proceed with your cancer treatments. You need to find an Oncologist that you Trust (with a capital "T") and let go and let G-d. You need to rely upon someone who has expertise in this field, who has studied it for years, who went to school for it, who reads the latest studies in the latest journals, etc.

      You can by all means feel free to question that person to the nth degree but if you want the best shot at surviving this without a reoccurrence, you will find yourself and Expert that you like and can relate to. If you're having difficulty doing that, I can try and help you. Feel free to message or even email me privately to discuss the particulars, but the one thing I would never do (and I have less chance of a reoccurrence than you) is not take the Tamoxifen (despite the hot flashes, depression and slight bone pain it causes [it's a bummer, but it sure as XXX beats a metastisis to the bones, to speak plainly]).

      Don't go for any kind of nonsensical treatments that they offer in Mexico (like coffee enemas, or hypothermia [that's what killed my friend]). Stay the course, though it's sometimes not easy on the mainstream path and talk to folks at CancerCare -their Social Workers are very understanding and knowledgeable and click on the purple box on the right for more resources that can support you through your journey.

      I wish you well and hope you make a good decision.

      Warm wishes,

      over 3 years ago
    • Tami's Avatar

      My Oncotype was 7 and I was put on Tamoxifin. The side effects from Tamoxifin were severe so my Dr. took me off but did not offer any other alternativies. Unfortunetly I have had a recurrence. I cannot think about the what if's but I do try and encourage others to be informed and not to rely on the results of the oncotype test results. (I turned out to be one of 7 out of 100 who had a recurrance). Talk with your doctor, get the facts, and if necessary, get a second opinion. I am now taking Femara and have only minor side effects. I wih you well with your decision.

      over 3 years ago

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