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Breast Cancer | Last Active: Jan 30 9:43pm | Replies (22)

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@einnoc

Took Anastrozole for 7 months. Side effects: dry skin, dry eyes to the point of blurry vision; insomnia for weeks; excruciating back pain, when I had never had back pain previously; teariness; mood swings; brain fog; vivid violent nightmares and on 9/15/2022 my left knee blew out (meniscus tear) and put me in a wheelchair for 6 months. Had X-rays on 9/19; 9/21; 9/28 and 11/15. No break. Could not walk at all. Had to go to a knee joint pain clinic in Oak Brook (IL) and have injections from a board-certified physician of 32 ml of an anti-inflammatory and 6 ml of Durolane. Tramadol (50 mg.) for pain. Was in a wheelchair at my first post-operative mammogram on Oct. 3, 2022. Quit the A.I. drugs, which had given me the most pain I've ever experienced in 76 years. Off them for 9 months, but went in for an ultrasound (HerScan, at my own expense) on the first anniversary of my lumpectomy (1/27/2023) and had to secure an oncologist in Texas where we winter. Hadsha diagnostic mammogram, but declined having another stereotactic biopsy (which would have been my 3rd) because the first one was so bad that it didn't heal for 7 months. (The second one was done with a different instrument like a curly pig's tail and didn't hurt much). We gathered all my mammograms from years back and it showed no change in the calcification that showed up in the "good" left breast. I had had calcification on the right in 2018 and 3 years later it was the 11 mm. tumor, caught early via mammogram. Good margins, 95% estrogen positive. No spread. I am concerned that the calcification on the left might turn into a tumor in that amount of time, also, but i am ALSO concerned that digging around on the right side may have caused the tumor to form in the first place. Had 33 radiation sessions, but no oncotype or ki67 because my Illinois physician was a complete jerk. I now doctor 3 hours away in Iowa City and, when here, in Austin. Current Texas oncologist talked me into Tamoxifen, which I began on April 23, but I told him I would only do 10 mg. (and I took it every other day). Side effects with that low dosage were tolerable, but it still felt as though everything below my waist was going South. And you have to pee all the time. I was told I needed to step up my dosage to 20 mg. daily on June 23 and did but I couldn't stand it past Aug. 30 when I had blood work. The blood work in March was good. Ten things had gone bad by August on Tamoxifen. I also had non-stop UTIs, EXTREME exhaustion (could only be up 3 hours) and the same urgency to urinate, which wasn't always genuine. I quit taking the Tamoxifen Aug. 30 and have not taken any adjuvant therapy since then. I would ask if anyone knows what the very best method to "track" and keep on top of any recurrence might be? I know mammograms, of course (the last one broke open the skin under my "good" left breast in a 6" x 3" gash) and possibly MRIs, if my doctor will order one, but is there another test of choice that would help me exercise Eternal Vigilance? I was in a MOST knee study for TWENTY YEARS (1997-2020) that tracked deterioration of one's joints, especially injured ones. Had frequent MRIs of my left knee (bicycle injury) and other damaged joints (elbow from volleyball) and excruciating pain when on Anastrozole. Two oncologists in Texas have said I should never have been put on A.I.s in the first place, and I definitely agree. I asked for an oncotype for 17 months, but it took my Texas doctor to get it. It is 29, not a good score. So, I'm concerned about the fact that my original doctor just dismissed my inquiries about an oncotype, saying, "You don't need one" and walking out. He also dismissed my surgeon's suggestion of a ki67 saying, "I won't order that for you. You'll have to get someone else" (and walked out). I did, and I don't go to that jerk any more.

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Replies to "Took Anastrozole for 7 months. Side effects: dry skin, dry eyes to the point of blurry..."

Dear einnoc (@einnoc):

I am so sorry for all your sufferings:(( Thanks for sharing your journey so far to help us!

Could you please let me know what is a ki67 test, please? What is the normal range - if there's one - of this ki67 test?

Thanks! Wishing you better days to come on this journey ahead!