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Concerned about the side effects of anastrozole
I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?
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@oilermama @colleenyoung A few thoughts about opinions and breast cancer.
When I first got the news about the possibility of breast cancer (immediately following a mammogram from the lab's radiologist), I was in shock. Following the succeeding core biopsy (where the Nottingham and FISH histologic grade scores disagreed...), I went directly to my GP who had several recommendations on surgeons and oncologists (translation: doctors who had good reputations). It took another month to get an appointment with the breast cancer surgeon I chose... another several weeks to get on her surgical schedule... another ten days to get on the schedule of the tumor board (a group of cancer specialists) which she had convened.
With the tumor board report in hand (saying radiation and AI is all that was needed for Stage 1, ER+, HER2+, Grade 2), I called one of the recommended oncologists (another 3 weeks to get on her schedule) who disagreed with the tumor board report and insisted that I begin with 12 weeks of chemo and 12 months of Herceptin infusions, followed by radiation at the conclusion of the chemo part and an AI. She gave me ten days to decide what I was going to do. Back to the surgeon for her recommendation on a second opinion oncologist who saw me two days before my decision was due. The whole time, my head is swimming. The second oncologist agreed with the first one on complying with those treatment standards because of my HER2 status... the first oncologist said it was due to the Grade 2 status of the tumor.
During chemo, a second radiology oncologist disagreed with the first radiology oncologist on whether radiation was recommended at my age.
In the meantime, I'm reading how the British National Health System had decided that 9 weeks of Herceptin infusions were as effective as the 12 months of infusions (recommended by the oncologist), resulting in fewer cardiac effects and lower costs. My oncologist disagreed. I stopped the Herceptin (concurrent with chemo) after the recommended 3 months of chemo. My surgeon agreed with my decision, my oncologist did not. Four months later, the American Society of Oncologists declared that six months of Herceptin is as effective as 12 months. My oncologist continues to opine that this group's conclusion does not comply with the established treatment standards....
Cancer is a harrowing swamp of opinions (locally, regionally, nationally, and internationally). I live in the San Francisco Bay Area with access to plenty of top-rated hospitals and physicians, and yet, in the end, YOU have to pick your way through the alligators... YOU have to decide between all the varying opinions and in a short period of time (and last I looked, I don't have a medical degree). I recently read that some researchers now believe that breast cancer is caused by a bacteria...? that recurrence increases once AI treatment ends? ... on and on. The science of it all will continue to evolve and the physicians will continue to rely on treatment standards and be behind the curve as they wait for long-term trials to play out. In the meantime, breast cancer is effecting 1 in 7 women and, according to my surgeon, is predicted to effect 1 in 4 within 15-20 years... and each woman basically is on her own in her fight for survival.
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3 Reactionsmy first suggestion is to read about the new specialist; their bio, anything that they have published, etc. My second suggestion is to ask friends, co workers, neighbors, support group members who have had breast cancer for their experiences with area specialists. That has been extremely helpful for me. Finally, I would ask the current doctor about the specialist - how they know the doctor, what their working relationship is, how many patients they have sent on to that doctor, etc. If you are working with a nurse navigator, ask that person as well.
Best of luck - I was fortunate to be referred to an amazing doctor for a second opinion.
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2 ReactionsExcellent response.
@elizm, this is a very wise post. I would like to get your tips on this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Mayo Clinic would like to make a brief video for patients by patients on how to work with your doctor. Everyone is invited to add their tips.
@gwinter It is absolutely a quandary and sometimes a Hobson's Choice. All the time we're reminding ourselves that it's our life and we want to get this right. I switched oncologists during my first week of chemo because the first was so condescending with my questions. The second one and i have good discussions regarding what I've found in my research; that doesn't mean that he agrees with me all the time, but upon occasion he concedes that there are plenty of people in the field who have similar concerns, doubts, etc. as I regarding a treatment standard, for example. This is not easy for the doctors either... each individual patient has chemistry, age, genetic, weight differences, multiplied by all our different cancer profile differences, and the science of cancer changes daily, too. And then there are all the personality differences between people in general (doctors and patients)... they're stressed and we're stressed. It indeed is a quandary!
If you are having trouble tolerating anastrozole, definitely demand that you be switched to another AI (there are many), and to another, if need be, before giving up entirely on them. And, you have the option of doing what I did which was to cut the dose in half and see how that goes. (If I can get somewhere with my chemo-induced neuropathy, I may try easing into a whole dose of anastrozole every other day and see what that feels like.) My argument with my oncologist was to note that I'm extremely sensitive to most pharmaceuticals, and that most women give up on AIs after two years. I'd like to be able to continue taking mine for 7 years, but it may well be at half strength... we'll have to see how that goes.
And don't forget, messing with a woman's hormones is going to have reactions... including your hysterectomy in February... and your body is not static in any event.
Even taking a full dose of any AI does not guarantee an absence of recurrence (another cancer) in two, five, seven, ten, etc. years. That's just the way cancer is and the oncologists know it, too. I will be faithful with my screening mammograms every six months, I will have my bone density tests every two years, I will eat healthfully and exercise and meditate regularly, I will have another colonoscopy in three years, but I also will continue to research applicable updates in the cancer field and be my own "general contractor" with my life (my advanced age of 71 may play a part in that decision). Other patients may prefer to have their doctors make decisions for them and, if that works psychologically for them, then I support their choice. In any event, never hesitate to contact/email/call your physician(s) with questions which you may have. The worst that can happen is that they won't respond, and that is information in itself.
This journey requires a certain amount of bravery, faith, and serenity... and I wish that all for you.
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1 ReactionElizm, thank you for your post! I have been rereading everbodys posts and not sure if I am finding answers or coming up with more questions.
I was diagnosed with stage 1A borderline stage 0 breast cancer. Marginal tissue clear and only 2 lymph nodes out and they also were clear. 20 radiation treatments and was to start arimidex...did once terrible side effects....did again a month later worse side effects plus blood pressure went up! Trying to decide whether to try again. Hysterectomy coming in February...this is so hard to have question everything or email or call doctor. He seems to not believe me. I asked to have hormone level tests and he said absolutely no. Then I read in my paperwork I have only3% of recurrence....this is really a quandary
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1 ReactionAfter three months, I began to experience terrible joint pain and numbness in my fingers, hands & wrists, and fatigue set in — my greatest challenges. No hair loss.
Wishing you good health!
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1 ReactionIt helps a lot! Thank you
Yes, of course! For background, I had a hysterectomy at age 45 and my Dr. put me on Premarin to avoid hot flashes, etc. I felt wonderful and took this for 15 years. I had regular mammograms each December and at age 60, my cancer was discovered. I had estrogen positive intraductal cancer stage 2 that had broken through the wall in one year. I had a lumpectomy, chemo therapy, and radiation. It was a rough time but I had huge support from family and friends. Arimidex was prescribed as I said, and took that for 13 years. I think all survivors think about their journey every day and I am so thankful I had the best doctors and treatment. I really had no side effects from the arimidex and am so thankful I am a very healthy 75 year old. I try to share my journey, if asked, if this will help another person.
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4 ReactionsHi @karenrbach, As a 14 year breast cancer survivor, your experience and knowledge will be welcome on Connect. May I ask what type of breast cancer you had and which treatments besides Arimidex?