Concerned about the side effects of anastrozole

Exemestane Reduces Breast Cancer Risk in High-Risk Postmenopausal Women
Adapted from the NCI Cancer Bulletin.

The list of drugs that have been shown to reduce a woman's chance of developing breast cancer can now be expanded from two to three. Clinical trial results presented at the 2011 American Society of Clinical Oncology (ASCO) annual meeting showed that the aromatase inhibitor exemestane (Aromasin®)—commonly used to treat early and advanced-stage breast cancer—substantially reduced the risk of invasive breast cancer in postmenopausal women at high risk of developing the disease.

The findings were also published online June 4, 2011, in the New England Journal of Medicine (NEJM).

At 3 years of follow-up, women who took exemestane were 65 percent less likely than women who took a placebo to develop breast cancer. This is the largest reduction in risk seen in any of the four large breast cancer prevention trials that have been conducted to date. In previous trials, daily use of tamoxifen or raloxifene reduced breast cancer risk by approximately 50 percent and 38 percent, respectively, after 5 years of follow-up; both drugs were eventually approved by the Food and Drug Administration (FDA) to reduce breast cancer risk.

@einnoc , my new oncologist/surgeon did my Oncotype test probably a year after my mastectomy. He said they keep the tissue for 7 years. He requested it. Maybe you can still have it done.

Yes, Sequoia. I know this and---17 months after politely requesting the oncotype through the patient portal repeatedly---my new oncologist in Texas got it for me. It was 29. This means that my recurrence % is 36% if I take no adjuvant therapy pills If I were to take Tamoxifen for 5 years the % for recurrence drops to 18%. Neither is a particularly "good" score and---if he had ordered the oncotype at the outset of my treatment in December of 2021---my current Texas oncologist says he would have ordered 3 bouts of chemotherapy for me. (He said what kinds, too, but I don't remember the technical names.)

So much for "you don't need one."

Learning the recurrence score was the main reason I wanted one at the late date of spring, 2023. I had hoped it would put my mind to rest about the likelihood of another tumor forming. It did not. A score of 25 or above usually indicates the need for chemo.

On the other hand, my Iowa City oncologist (I no longer struggle with the guy who only saw me 2x in 8 months and was horrible in every way) told me that the threshhold for chemo was lowered to 25 from 30 about 3 years ago because of the proliferation of younger women being diagnosed with b.c. By those standards we could view my score of 29 as "borderline" and excuse the failure to suggest chemo.

I don't feel sad that I missed the window for chemo back in 2022, because I am of the opinion that older women (I am almost 79) will not tolerate some of these extremely toxic preventative pills or actions as well as our younger counterparts. My Texas oncologist agrees that the window for chemo has closed. He did talk me into trying Tamoxifen (for 5 months) but, much like the 7 months on Anastrozole, the side effects were so debilitating that the risks, to me, outweigh the benefits. I had nonstop UTIs, which, at almost 80, are not something to fool around with, and the fatigue was so debilitating that I could only stay up for 3 hours at a stretch. I also felt as though I had to urinate non-stop.

My advice to others is not to try to be a "good little patient," putting up with horrible pain and being ignored by the primary physician. I should have spoken up more loudly and not just let him walk out of the few (2) appointments that he bothered to show up for. Usually, I was pawned off on "the minions," a cast of P.A.'s who all looked alike and seemed to be very submissive drones who were about as memorable as a doorknob. They never asked how I was doing and they never listened if and when I tried to tell them. They also were responsible for the tactic of saying, "That is a question you need to take up with the doctor" and "shining me on."

Hearing the remark from an oncologist at MD Anderson that Anastrozole is "the drug best tolerated by their patients" makes me less likely to go to MD Anderson. If I did go there because of their reputed expertise, I'd ask you for the name of the oncologist who made that statement so I could avoid that person. Anastrozole has semi-crippled me and caused me the most pain I have ever experienced from anything in 76 years of life; I find it very difficult to swallow that individual's remark without some sort of statistical data to back it up.

You’ve given me some hope. I start Anestrzole in June. I’m 58. No joint pain and fairly fit so I’m just hoping I might do okay.

I have osteopenia, and as soon as I started AI's (I've taken both Letrozole and Anastrozole) I was put on Prolia paid for by Medicare. It has to be authorized by Medicare before each shot at least 60+1 days apart. I was also told by the technician for the bone density scan that Medicare would pay for it every year as long as I was actively being treated for bone loss. FYI I've been treated by both UIHC Iowa City and Genesis. I do have BCBS supplemental.
I have osteoarthritis in the knees, and when it got crippling (from Anastrozole?) I took collagen supplements which totally worked.

I started experiencing dizziness, but I thought it was vertigo, never thought it could be due to the Anastrozole. This medication causes so many side effects. My dr told me to stop and we are going to try a different medication in a couple weeks. If I still have the side effects, I've decided to trust God and stop taking them.

I appreciate your reply. I read this study when my oncologist recommended that I try exemestane as an adjuvant therapy, since I was unable to tolerate anastrozole. It is my understanding that this study was to determine the efficacy of taking exemestane as a preventative for women who have a high risk of developing breast cancer. It is encouraging that women who took exemestane as a preventive were 65% less to develop breast cancer than those who took a placebo.
In my case, I took anastrozole as an adjuvant therapy after having a lumpectomy and radiation. According to my oncologist, my chance of recurrence without an aromatase inhibitor is 12%. If I took it for a minimum of 5 years, my chances of recurrence would be reduced by 40 to 50% - 7 or 6% respectively.

I had osteopaenia going in to treatment, and my experience(s) while on Anastrozole for 7 months, including my left knee totally blowing out and putting me in a wheelchair for 6 months, has led me to the very likely conclusion that the knee collapse (of an already fragile joint) was exacerbated by Anastrozole. I started out with the intention of being treated, start to finish, by Genesis in Davenport, given very bad interactions at Trinity in Moline since 2018. I wouldn't even go to Trinity for a simple mammogram after 2018, but the pandemic upended my plans to avoid the Illinois side of the river and the 33 radiation treatments I was told I needed, which was a fairly lengthy process, as you can imagine, did not help, so, having been told that I didn't even need an oncotype, I interpreted that to mean that my b.c. was a garden variety tumor that could just as easily be treated locally. Not sure that was a wise decision, but it is why I ended up back at Trinity and not at Genesis, where I had already selected a surgeon (Dr. Hartmann), who, among other pandemic crises, totally disappeared without a word to the patient(s) as to where he had gone or when he would be back. (It was very weird that those of us whom he was supposed to operate on were not told anything about the sudden cessation of his office. Since I had done some reading on optimal times to have surgery and knew that simply "hanging around" for months wasn't ideal, I tried to be positive and gave in to the idea of going to the much-closer Trinity for the radiation, despite bad experiences there during a breast biopsy in 2018. The reason I have not gone forward with more active treatment for bone loss is that I am "borderline" currently and the discussion(s) on taking biphosphanates (among other things) and on the veracity of Dexa scans are everywhere. With a T score of -2.2T currently, I filled, but did not take, such a pill. It was prescribed me by my endocrinology team at my request. I was told to step up my calcium intake (with D and K) and did. (There is some information out there about whether or not an uptake in calcium can contribute to heart attacks and strokes, so taking 600 mg. in the morning and 600 mg. at night is about all I've done, so far. My next trip in to see the endocrinology team is in early May. Meanwhile, I've been locked into major dental work ($10,000) since November and was glad I could truthfully say I had not taken the biphosphanates that they feared might weaken my jawbone prior to their implant procedures.

As to the collagen, I ordered (Amazon) collagen and put 2 scoops in my morning coffee every morning. I cleared it with my Texas oncologist (some say their doctors disapprove). My knees are still osteoarthritic and were X-rayed most recently in October, right before we left the Quad Cities to winter in Texas. I was asked if the pain was bad enough to warrant a shot for it, and I said "no" at that time. I had fallen in a darkened Chicago theater and was unable to put any weight on my knees at the time, so there was a precipitating event in going in to be X-rayed. I've even been told that, after the injections following the blow-out of my left knee on September 15, 19, 21 and 28 of 2022 (Oak Brook Joint Pain Center) that the osteopaths at Moline's OAR (9/28/2022) could "see cartilage on the patella" in the X-rays they took on---after I'd already had injections of 32 ml of an anti-inflammatory and 6 ml of Durolane on 9/21 and been given some Tramadol pills (50 mg.) for pain. I hope the collagen is helping, but I really feel that I'm "flying blind" most of the time regarding my health status. There seems to be no easy or available way to monitor the dormant cancer cells that might exist in our bodies and little or no efforts are made to measure estrogen levels, before, during or after taking A.I. pills or Tamoxifen. It's all just "take this 20 mg. pill" and pray. I posted the current clinical study that is working towards a method of identifying dormant cancer cells in our bodies and (potentially) weeding them out. In the meantime, I've been a big advocate of giving b.c. survivors all the information we can get. I'm not sure what BCBS supplemental means: I'm guessing it's insurance, but, again, flying blind here. I have Medicare and a United Health Care policy. As for the Signaterra test, yes, I've been told that they primarily want to use it to monitor women who have metastasis and I understand that, but I've also written to and spoken with the company and it seems that a truly motivated person who wanted it to be used to monitor the cancer cells that might (or might not) still be circulating in their body could pay for it themselves out-of-pocket. While it was not cheap, it definitely interested me as a relatively easy method of "monitoring" our condition as we go forward as b.c. survivors, since I'm sure both of us know of many people who went along fine for a number of years before the bad news of a recurrence emerged. It was exactly what my 3 employees whose mother was treated by my former Illinois Trinity oncologist experienced. She had been taking the adjuvant therapy drugs and many years had gone by. When she asked her oncologist to please run tests to find out why she felt that something was "off" in her body, his response was that she couldn't be experiencing a recurrence because she had taken the adjuvant therapy pills. (She was, and it had moved to her pancreas and killed her.) He was similarly resistant to letting her 3 daughters take her to the Mayo Clinic for treatment and was not helpful in regards to gaining access to the tumor removed years prior, (One of his remarks to the 3 daughters, who were lobbying for an oncotype late in the game, which he was not supportive of, was, "After I talk to you three, I need therapy.") I hope you didn't fall under the treatment of the same guy I had, because anyone who says, "Why do you want to take her to the Mayo Clinic? I interned there and I know everything they know" is obviously a huge narcissist who is used to playing God and will brook no discussion about treatments he is not totally supportive of (which means nothing additional that would be expensive, since he "doesn't want to get dinged by Medicare.") I'm impressed with the care and compassion I've received at the Texas Oncology Clinic in Austin; the verdict on Iowa City is still out. Been there 3 times. The oncologist has not (yet) examined any part of my body, including my breasts. On Visit #2 he said he was going to do an exam when I showed up for Visit #3. He did not. He poked his head in the examining room and said "Hi" and disappeared. I see him again on May 24th. It will be interesting to see if the 3-hour drive yields any sort of real "examination" worth the name this next time. At one point he told me that I was the "healthiest" of the 22 women he had seen that morning (which I do not doubt) and that "cancer isn't going to kill you; something else will kill you first," On the positive side, when I asked him to recommend a good oncologist in the Quad Cities he laughed and said, "Why do you think everyone in the Quad Cities comes here for treatment?" He also did share with me the information about how the baseline for chemo treatment had moved downward from 30 to 25 in the recent past, which made me feel slightly better about not having had an oncotype with an onco score of 29.