Concerned about the side effects of anastrozole

I was diagnosed on 12/07/2021 and had lumpectomy on 1/27/2022. I was put on Anastrozole on 1/27/2022, roughly a week out of surgery (at a time when I was battling a seroma that required me to take 500 mg. of Cephalexan every 4 hours for weeks. I was not given a bone scan until May 22nd,even though I am a Type II diabetic and have osteopaenia, which, in 2017, was -1.4T. I inquired about an oncotype of my first Illinois oncologist, and he said, "You don't need one." My presentation was 11 mm., good margins, no spread according to seminal lymph node biopsy and 95% estrogen positive. Because my oncologist refused to order an oncotype, I did not receive chemotherapy, although my current Texas oncologist says, had I been his patient, I would have had 3 bouts of chemo. Iowa City, where I now have to drive 3 hours to doctor, said they would not have radiated me at all, because I am a woman in my 70s. (76 at the time of diagnosis). They told me that 3 days before I was to start radiation sessions in late May. I first noticed symptoms while we were in Cancun, Mexico, where we go for Weeks 13 and 14 of each year (time shares). I was at dinner with 17 family members when I suddenly got very teary and felt that I was going to cry (for no good reason.) I excused myself and went to the rest room to avoid making a scene. The "game night" in our unit was canceled, as I went right to bed after dinner. (My daughter was unhappy, as it was only 8:30 p.m. and I am known to be a night owl.) I had brain fog, EXTREME joint pain that was the worst pain I've ever had in my life, teariness, blurry vision to the point of consulting an opthalmalogist (he said dry eyes), dry skin, insomnia and vivid violent nightmares. On September 15, 2022, while I was walking along a city street in Chicago (no fall or injury) to meet a girlfriend for lunch my left knee---previously injured in a bicycle accident while on vacation in 1997---quit working. The symptoms were like a meniscus tear. I had X-rays o 9/19, 9/21, 9/28 and 11/15. On 9/21 I went to a joint pain clinic and was injected with 32 ml of an anti-inflammatory drug and 6 ml of Durolane and was given Tramadol for pain. I had to hobble with a cane and was wheeled to my first post-operative mammogram (on Oct. 3) in a wheelchair, which I was in, off and on, for 6 months. I now cannot walk any distance without bracing my injured left knee, which has meant a lot of changes in my life. (I am a critic for film festivals and often have to stand for long periods of time on Red Carpets, awaiting the talent. I did stand from 3:15 p.m. until 5:30 p.m. at the SXSW Premiere of "Stormy" (documentary on Paramount Plus) on March 8th, and it was not easy for me. I had been placed in an arthritic joint/damaged joint study, the MOST study in 1997 and was in it until 2020. My doctor either didn't know or didn't care and he has effectively semi-crippled me for life. My surgeon called me in to ask how I was doing (my Illinois oncologist never saw me, but pawned me off on "the " and only saw me 2x in 8 months). I told him I was completely desperate, the pain was unbearable, and I was very concerned about recurrence, but, without an oncotype, I had no idea whether I was at high risk or my otherwise good presentation somewhat protected me. He suggested I ask for a ki67 to gauge the tumor's aggressiveness. I asked (through the patient portal) for 17 months. My doctor never met with me. but twice. At the first meeting, I told him of my side effects and he said, "Don't take it then" and walked out. No discussion of any alternatives to Anastrozole, and I don't think he ever knew or cared that I had been identified as someone who had a family history of bad arthritic joints and also had damaged her left knee in a bad bicycle fall. At the second meeting (Oct. 5, three days after my NED mammogram, which I was in a wheelchair for) I asked him in person to please order a ki67 to give me peace of mind. He said, "I won't order that for you. You'll have to get someone else" and walked out. I asked the radiologist why this physician would never order things that other cancer doctors have considered "standard of care" since 2013 and he said, "He doesn't want to get dinged by Medicare." We spend winters in Texas and I had a HerScan test that did not go well and led me to my current Texas oncologist, who got me the oncotype. It is 29. Over 25 usually means chemo, but it had been 17 months. He convinced me to try Tamoxifen, which I did for 5 months, but my experience with the Anastrozole was so bad that I told him I was going to take only 10 mg.. not 20 and I then took that from April 23, 2023 until June 23rd. The side effects were bearable, but there. I constantly had to urinate and everything from the waist down felt dry and itchy and uncomfortable. On July 23 my Texas oncologist said I should move up to 20 mg. because there is no data or clinical trials for amounts less than that. I complied and began taking 20 mg. daily. I had EXTREME fatigue (could only be up for 3 hours daily), non-stop UTIs and the 2 different antibiotics given me for the UTI led to a fungal infection. I had a pelvic ultrasound to make sure that 5 months on Tamoxifen had not led to endometrial cancer. (It was okay). I quit all adjuvant therapy drugs on August 30, 2023. I cannot spend the next 10 years this way. I am now 78 and am 2 years and 2 months past surgery. I feel more-or-less normal and just covered SXSW for 8 days, turning in 32 reviews for my WeeklyWilson blog and for ThetMovieBlog. I still can't walk as well as I could beforen a completely egotistical, narcissistic, uninformed, uncaring physician consigned me toa wheelchair with his high-handed (and uncompassionate) treatment, but I now will not suffer in silence as I did initially. I spent one full year trying to adjust to the toxic substances in these drugs. I am 78 years old and also battling Type II diabetes, osteoporosis (my bone density declined from the -1.4T mentioned above to -2.2T where osteoporosis usually starts about -2.4T. I have lost 44 lbs. and joined a gym. I will try to stay on top of recurrence, which is estimated to be 36% if I don't take Tamoxifen for 5 years minimum. and 18% if I do. It is sheer lunacy that older women are not in clinical trials to determine dosage based on age, weight, etc. I no longer trust the medical establishment and feel that the modern medical mantra is YOYO: You're On Your Own.

Totally agree!

I love yoga - just cannot seem to get myself to DO it! Thanks for the encouragement.

Oh thank you for the validation!

I do am not working outside the home now. I really not sure if I could. We’re building a house now and I had so much to do and couldn’t figure out where to start , I almost started to cry. I went for a walk- did some stretching and a little work in my green house. Then started “new house” stuff. Yoga has also helped- especially the breathing techniques.

I wonder if I want to mess with less dose or alternate days. Kind of down on the whole thing right now. If I go off them and get my brain back - I don't think anyone can really predict the risks. I thought once surgery and radiation were over this would be past tense! (Sort of like thinking parenting stops when the kids move out!)

It seems like every woman I talk to is having some effects from these drugs - maybe I live in a weird "non-majority" community! It just matters how much you tolerate. I was OK with the warm flashes but the brain fog...Thanks for the support!

Boy I don't know when it will get to an on/off take/risk it stage. I appreciate the support!

Thank you for sharing. I really could remember things before Feb 15 and now it is super stressful at work!

Anastrozole did not work for me. Took almost a month to feel better. Started Exemestane- side effects not as bad but after about a month insomnia kicked in ☹️. Not sleeping makes all other side effects worse- including brain fog and yes unable to recall or takes a while to recall. I started taking it ( after talking to my PCP) every other day. It’s been about a month now and not much difference. I’ve tried taking it at a different time and adding various sleep aids. Not much luck still. The only other option I see for me- is stop taking or try acupuncture. I really wanted to stay on until June. Closest acupuncturist is over an hour away.