Concerned about the side effects of anastrozole

Hello All! - Re: Lymphedema that the doctors told me I couldn't/didn't have and the consequences

I am posting to this page because it's a large and active group of breast cancer survivors but perhaps theres are more places or better places to post this so I'm reaching out to @colleenyoung to share at will. (I'd do it myself Colleen but I'm not very good at navigating online, ha ha).

My post is regarding my Breast Cancer Experience and Lymphedema.

I have been lucky because I caught my cancer early, first as LCIS and then as Stage 1 Lobular Invasive, with no lymph node involvement. I opted for bi lateral mastectomy and am cancer free now at four years last month. I had a few complications and I've had the usual worry and stress and decisions we have to make to hopefully get and stay healthy. What I didn't realize that 'breast cancer, the gift that just keeps giving' would throw me a curve ball and I'd like to share that information to hopefully help other women avoid the mess I've just gone through.

During my surgery my surgeon removed only two lymph nodes from my right side (the invasive cancer side) and one lymph node from my left, where there had been LCIS two years earlier. My lymph nodes were clear but during my surgery there was a surgical error that resulted in damage and large hematoma (bruise). It resolved slowly but I noticed swelling in my hand and arm on that side. I had a hard time getting my doctors to acknowledge it because they said I was at very low risk for lymphedema. I persisted and had PT and took it upon myself to get massage therapy (which my medical group offered at the time). After a year my oncologist finally acknowledged the swelling problems and I had 'revision' surgery which removed a considerable amount of tissue under my left armpit and the swelling stopped. I never had to use the compression sleeve I had purchased and continued with massage therapy for several more months and continued my own personal lymphedema management.

On November 14th I woke up with a very, very small cut and a very swollen hand, went to the ER and was sent home with a splint and an x ray showing no broken bones (that was their first assumption despite me telling them of my lymphedema.) At my second ER visit (different hospital) a couple hours later I was admitted to the hospital for 6 days on IV antibiotics and went into sepsis. I didn't know it was possible to have a worse experience than breast cancer but I may have found it.....sepsis. My experience was random, we still don't know what the cut was from (I don't know either) or why it escalated in a few hours to a life threatening experience.

I am a little over a month out from making it through this and I'm working on trying to understand how to move forward. I have been to numerous doctors and follow up appointments and credit the good doctors I have had in patching me back together. But still, the most disappointing encounter I have had is with the surgical breast team who still don't acknowledge how little support they provided or are providing.

Moral of my story - I should NOT have gotten lymphedema (according to statistics) and I should not have gotten sepsis (although there a bit of randomness to sepsis). But I did and the surgical team where I was treated have now discontinued massage therapy, only offer limited Physical Therapy and are still telling me I was 'low risk'.

My hope is that no one else has to experience what I have gone through the past month (although my oncologist says that it was not so long ago the leading cause of death in the world) but if you are facing breast cancer surgery involving your lymph nodes or if you already have.............taking a long look and researching everything you need to do to remain safe from or with lymphedema is well worth the time. My doctors kept pushing my concerns aside but deep down I must have known my own body and I wish I had been even more proactive in caring for my lymphedema. Not to make anyone facing breast cancer surgery even more distressed, but this is a real problem that isn't managed well yet by the process.

Cindy (who will be wrapping herself in bubble wrap every day in the future)...........

My right foot also....ball and toes numb after 4yrs anastrozole--- right a kle swollen in the last 2mos-- thank you as your sharing is helpful and comforting.

Elizm— I took 600 mg divided into 300 mg at two meals daily. I’ll never know if it really helped or not, because I started having symptoms early into the taxol portion of my treatment and my doctor advised me to take it... so I don’t know how bad my neuropathy would have been without it. (The chemo nurses also had me keep my hands and toes iced down during infusions...never will know for sure if that actually helped or not either.) The doc told me to take 300-600 mg daily but recommended I take the larger dose. After two years I still have significant numbness/tingling in my fingers and ball/toes of one foot. Interestingly about three months ago I realized that my other foot had improved so much it is almost back to “normal”! Have no idea why just one foot is better. For my hair I was taking 5000 mcg of Biotin daily.

Good luck with your doctor visit. I hope they help you figure out what is best.
This a complicated situation for a lot of us. Nothing is guaranteed.

Hi Flowergal, My breast cancer was in 1 breast, Ductal Carcinoma 1.5 Cent. small mass. I have been taking anastrozole for 2 years now and the last 6 months have been having some very uncomfortable symptoms. Bone and joints very achy most of the time, nights are worse. Very tired (I teach elementary), hot flashes occasionally. I had 20 days consecutive radiation post surgery. Then this hormone therapy to decrease estrogen in blood stream. I am spending the weekend researching info to help me make a decision to continue, take a break, or stop. The other meds, seem to have greater risks. Oh, I have osteoporosis. Dr. wants me to take the reclast infusion once per year, I've had one does, then a tooth split in 1/2, had to put off any more reclast tx. Yes, this is complicated. I see oncologist Mon. Not sure how it will go.

It is so complicated! I took have osteopenia and on Anastrozole. I had Prolia shots in 2019 and massive dental work in early 2021. Luckily everything went well.
I had been in fosamax in earlier years, but my jaw bone was good.
So many things we have to balance now that I never worried about before. I understand what you are saying.
Right now for me it's fatigue. Really struggling.

I thought Tamoxifen is prescribed for premeopause women...

Thanks, Flowergal. I review at WeeklyWilson.com and also on TheMovieBlog.com,
I've been reviewing film (a sidelight, as I taught and had "real" jobs, too) since 1970, first starting out in the real newspaper (Quad City Times, Davenport, Iowa.) In fact, I compiled my reviews from that paper in a book entitled "It Came from the 70s: From The Godfather to Apocalypse Now." (available on Amazon with 10 trivia questions per film, with the answers upside-down on the next page.)
I have covered the Chicago International Film Festival for over 20 years and have done SXSW since about 2015 and also, over the years, have been Press at Sundance and the Vancouver Film Festival and in Denver, Nashville, and others (Windy City Film Festival, but that time I was a finalist in the screenplay competition.) The injury to my left knee was devastating for SXSW last year, but they were very kind to me, and, somehow, I made it through the continuous standing that occurs when you are waiting for the "stars" to show up. I hope to be able to continue reviewing, as I have for 52 straight years, for the forseeable future. I also write "long" on occasion and those works (30+) are up on ConnieCWilson.com. To say that I found being in a wheelchair for over half a year inconvenient is putting it mildly. Would any of us want to be unable to take ourselves to the bathroom? Is that the price I must pay to "protect" myself against a recurrence---being semi-crippled? It's not even a guarantee of protection and it's too steep a price to pay. As for the Tamoxifen, my good friend Sue Ann Raymond (now 84) had her lumpectomy in 2013 and was put on Tamoxifen and described how she could not even get out of bed! Sue Ann is an Episcopalian minister in small-town Iowa and she simply pushed the pills back on the oncologist's desk and said, "It's in God's hands." Since then, she has shepherded her flock, jumped out of an airplane to raise money for a new roof, and been approached to run for Mayor. None of those things would have been possible if she had remained on Tamoxifen back in 2013 when it was prescribed to "protect" her. It really is a "risks versus benefits" thing, and, while I am justifiably apprehensive, I practice what I call Eternal Vigilance and try to push thoughts of my demise to the back corners of my over-active imagination. I'm in Austin (Tx) right now, planning our annual trek back to Illinois to avoid the heat of summer and thinking about "writing long" again with a 4th book in my 3-book series "The Color of Evil." I'll be attending the Rolling Stones concert at Soldier Field on June 27 and, in the 3 days after that, the Sundance films are being shown in Chicago for 3 days (although I reviewed most of the winners on my WeeklyWilson blog already.) As I have written elsewhere, my mother---a 4-shots-a-day diabetic---lived to be almost 96 and played bridge ALL the time (once flying to Hawaii to play in a tournament that Omar Sharif played in!). I'm not about to quit living life, nor am I willing to suffer the tortures of the damned on the off chance that these toxic substances might "protect" me somehow. I'm going to be trying to find out about any other clinical trials of the sort explained here:
https://www.icr.ac.uk/news-archive/research-uncovers-how-to-target-sleeping-breast-cancer-cells-and-prevent-relapse?fbclid=IwAR30J3Q-rBjOi2h653iqloUDgUD-2TV6B9qUjB2G1uLrSk2Mnxb12SCW4OY_aem_Ac_UcOuM91zMYSJF2X-kEA47-wtYrIKVQjcqT08TocMmdZp6Z-yVPtB2EKZR2x9liFgCGfYbeVjOTOcI-CDMi9za