Concerned about the side effects of anastrozole

Elizm, 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

@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.

@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.

@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.

my 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.

@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.

Anastrozole.. nurses deny side effects. My hair is falling out significantly. Emotional depression. Now taking nutrizac. Nurses and doc do not seem to know if that is ok. I am not impressed with lack of knowledge or care.

Hello and Hugs........
I have read all these posts with great interest. I am about to go to my 6 month checkup again (3 years now) since my mastectomies and each time I begin to worry. I worry because we all have to make so many choices and I hope I made the right ones but it's hard to know. The problem is seems is that cancer treatment is evolving (at least it's moving forward) and doctors will disagree and no two cancer patients are alike, not really. Some women tolerate the AI's and some do not (I couldn't....horrible depression, pain and they all caused my immune system to 'attack' me and I ended up with Shingles, Mono and various other unsavory side effects). So I have opted not to use them. I do get hormone tests (but that was with my previous insurance and doctors) not sure how going back to my Kaiser doctors will go. They weren't keen on the hormone tests but if needed I will get them myself elsewhere. I have no hormones to speak of....very low Estrogen and Progesterone, so I'm holding out hope that's what is actually causing my cancer. I am 'low risk' and grateful that I could skip radiation and chemo.
In addition, my husband has a cancer of unknown primary (CUP they call it). He has cancer, Stage 4, but the doctors don't know what kind of cancer it is. That's a thing.....who knew. We are on our third oncologist for him and second radiation oncologist. We've gotten a second opinion from a highly reputable hospital, the best in our area. Talk about fighting through nonsense. It's been a truly horrible experience. Because they can't identify the cancer they can't move forward with treatment (other than huge doses of chemo of all types that will kill him) so...........we're using marijuana, with their blessing and his tumor has actually gotten smaller and the lymph node activity has pulled back. But will that last?
What I now know is this.........doctors don't always know what to do. They can't know how a specific patient will react to treatments and they do their best (whatever that is at any given time). I sometimes wish I didn't question so much or feel the need to research and make all the decisions, but that is who I am. I do think that being an oncologist must be extremely hard because there are so many variables and unknowns. Always advocate for yourself. Change doctors if the ones you have aren't listening to you or if you don't feel comfortable and never apologize for expecting the best care you can get. And never let them dismiss you or what you're experiencing. I think doctors and nurses can become hardened to their patients (perhaps they must) but this is YOUR experience and you should trust how you feel.
While in the hospital we were in a consultation for my husband with an internist who had not seen my husband but of course had his chart. We were explaining his symptoms, meds, etc. and the doctor asked if I was a nurse. I thought they were confused and didn't understand I was his wife and they said they knew I was his wife, they just wondered if I was a nurse. I was amused..........I've spent so much time on my cancer, his cancer, (my sisters and step father's cancer) and various other caregiving tasks.........I now 'play a doctor on TV'.......ha ha. Hugs and Good Wishes to all.......