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)...........

I also tried Rogaine, actually the generic Monoxidil. My doctor told me to buy the mens version that is stronger than the women's. Check out the effectiveness online. I stopped using it because I had to wash my hair too often. I found the liquid much easier to apply than the foam. Good luck!

@lig46
When I was on chemo and lost all my hair, I started taking 50Kmcg/day of biotin. After the first year of that, I scaled it back to 30Kmcg/day. My hair returned as thick as it was before chemo and remains so on anastrozole. The one thing to remember is to stop all supplements at least 3 days before any blood tests (especially ones for thyroid) as biotin is among the supplements which distort blood assays.

My doctor told me to take Rogaine - You have to take it for like 3 months to see if it will even work. I bought some but have not used it yet.

I took Anastrozole for 5 years. I stopped 2 months ago, and I am still loosing hair. I have thick hair, but it is becoming more noticeable especially in the crown of my head. I am wondering when or if it will stop as well. Does anyone have any input?

Faslodex. Sorry about that

@dianamiracle, wow it looks like auto-correct made some interesting changes to some of the words in your text.
stomp tase inhibitors, obvious was supposed to be aromatase inhibitors, but "galoshes?" Is that supposed to be goserelin (Zoladex) perhaps? Or a new Minnesota winter phenomenon? 😉

I’m glad that you had another option. Wishing you the very best.

I could not take any stomp tase inhibitors. The pain and side effects were too intense and I was too close to going to the er. Mayo recommended galoshes, which is a monthly injection - one shot in each buttock. The only side effect is the day I receive the shot I am very fatigued and sleep in the afternoon. My body seems to be doing well on this. It is different for everyone, but worth asking about

@kathyomaha55
Kathy - I don't know if this will help. A cousin is on anastrozole and purchased some sort of "copper" gloves that she wears at bedtime and says that helps with the hand pain. I never tried that while on anastrozole because my heels, elbows, hands, spine, etc., were so greatly affected so I went off that as well as having horrendous headaches. I next tried letrozole - no headaches but the bone pain was bad. Have been on exemestane now for 3 months and can say it is not so bad, just some bone aches although not like with the other two types of pills and manageable - when it gets too bad then I take some ibuprofen. I was taking the pill at night to avoid any side effects but wound up with insomnia and now that I have switched to taking in the morning, not really having that problem. I do have some hot flashes, but they are not too bad - I just try to dress in layers and that works for me.