Mayo Clinic Connect
I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?
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Lymphedema Update – I've been having 'words' with my breast surgeon department regarding this lymphedema issue and I can report a 'win'. They offer no lymphedema treatment presently (it was cut) but as of today they offered me an outside referral to get treatment that will be covered by my insurance. My nature is to be cooperative and pleasant but sometimes you have to push to get attention and change. The doctor group even said they have 'learned so much from my experience' and they agree that more should be addressed for women moving forward. I hesitate to kick up a fuss but I'm pleased to say this time it has made a positive change for me and I hope will help women to follow. Now on to the hard work of figuring out how to manage this and never go back to the hospital with sepsis again…….but first, I'm going to make some Merry Christmas here at my house!! Hugs to all.
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Since most of the people in charge haven't had cancer, they have no clue. God bless them anyway. It's been almost a year now and I have finally been shown how to work the lymphedema for my breast. Hoping you get help soon.
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YOU are terrific!
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Glad you're getting that help @trixie1313 ……..Since my swelling had completely stopped I was only doing the minimum and not being as careful as I should have. Cautionary tale……add lymphedema management to daily chores!!
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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)………..
Hi Cindylb, thanks for posting about your story here. I've asked the tech guys to move it along with the related replies into it's own discussion in the Breast Cancer group so that your story isn't buried in conversation about AIs. It deserves to be seen.
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.
Thanks for the info on biotin and especially regarding biotin and labs. By any chance, did you have any side effects from that much biotin and did you split up the biotin throughout the day?
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I had no side effects (it was recommended by the nurse practitioner in my oncologist's office), and yes, I divided up (and continue to do so) the doses between morning and evening. For me, it's been preferable to Rogaine which made a mess of my hair the few times I tried it. [I also lost my toe and finger nails to chemo, and Biotin helped them grow back rather quickly without expected splits and chips.]
Obviously, you'll want to check with your PCP and oncologist before taking any new (to you) supplement and its dosage, especially if you're diabetic.
Interestingly (to me), many doctors are not aware of what biotin and other supplements can do to lab assays. I found out, quite by accident. About six months after starting biotin, a neurologist ordered a thyroid test for me. The results said I was hyperthyroid. My PCP said my thyroid felt fine to him, but then ordered an ultrasound of it, and referred me to an endocrinologist. I couldn't believe that I was hyperthyroid and decided to research it on the web where I found that, until ap. 2016, endocrinologists (and others) were unaware of the effects of biotin on thyroid tests, and had been treating those people for hyperthyroidism (which is quite serious)! In an agreement with my PCP, I stopped taking all supplements for a week and, sure enough, the next thyroid assays were quite normal. Ever since then, I go off of 95% of my supplements before any lab test, and the results for several measures are much improved over those when on supplements.
Why doctors don't understand the above and require this is a curiosity to me….
This study, just presented at the San Antonia Breast Cancer Symposium, Dec of 2019 might be of interest.
MY SUMMARY AND TEXT FROM THE STUDY
Anastrozole significantly reduced breast cancer after even 10.9 years after stopping the drug–a 50% reduction vs a placebo. Now on to deaths from breast cancer. At the time of analysis, 129 deaths had been reported, with no significant difference in all-cause mortality between the anastrozole and placebo groups. There had been only five deaths from breast cancer, two among those assigned anastrozole and three among those assigned placebo. “This is too few breast cancer deaths to determine if anastrozole reduces breast cancer mortality, so we are planning to follow the IBIS-II Prevention participants for longer to investigate this,” Cuzick concluded.
THE WHOLE STUDY
SABCS 2019: Breast cancer preventive effects of anastrozole persist long after stopping treatment
12 Dec 2019
Breast cancer incidence among post menopausal women at high risk for developing the disease continued to be significantly reduced 5.9 years after stopping five years of the aromatase inhibitor anastrozole, according to data from the International Breast Cancer Intervention Study II (IBIS-II) Prevention trial presented at the 2019 San Antonio Breast Cancer Symposium, held Dec.10–14.
The study is being simultaneously published in the The Lancet.
“IBIS-II Prevention was designed to investigate whether fiveyears of anastrozole can safely and effectively prevent breast cancer in postmenopausal women who are at high risk for the disease,” said Jack Cuzick, PhD, cochairman of the International Breast Cancer Intervention Studies. “In 2013, we reported that in the first seven years of follow-up, anastrozole significantly reduced breast cancer incidence compared with placebo and that it did so with very few side effects."
“Our new data show that after a median of 10.9 years of follow-up there continues to be a significant reduction in breast cancer incidence,” continued Cuzick, who is also director of the Wolfson Institute of Preventive Medicine, head of the Centre for Cancer Prevention, and the John Snow Professor of Epidemiology at Queen Mary University of London.
“It is exciting to see that anastrozole has a continued impact on breast cancer incidence even after stopping treatment, as this strengthens the case for its use as a breast cancer prevention therapy.”
Cuzick and colleagues enrolled 3,864 postmenopausal women at increased risk for developing breast cancer in the IBIS-II Prevention study from 2003 to 2012.
Women were considered to be at high risk for breast cancer if they fulfilled any one of a number of criteria, including having two or more blood relatives with breast cancer, having a mother or sister who developed breast cancer before the age of 50, and having a mother or sister who had breast cancer in both breasts.
Among the participants, 1,920 were randomly assigned to anastrozole for five years and 1,944 to placebo.
Five-year adherence to treatment was 74.6 percent for anastrozole and 77.0 percent for placebo, which is not significantly different.
After a median follow-up of 10.9 years, the researchers found that women assigned to anastrozole were 50 percent less likely to have developed breast cancer compared with women assigned to the placebo.
Cuzick explained that there were no new adverse side effects to add to those reported in 2013, which were mostly small increases in muscle aches and pains, and hot flashes.
“No excess of fractures or other serious side effects were seen with anastrozole,” he said.“The 50 percent reduction in likelihood of breast cancer incidence after 10.9 years of follow-up is slightly less than the 53 percent reduction we reported after the first seven years of follow-up, but it is still a significant effect and larger than that seen for tamoxifen,” said Cuzick.
“Another way to consider the data is that it translates into an estimated 29 women needing to be treated with anastrozole for five years to prevent one breast cancer during treatment and in the next five years.
“This is far fewer women than the estimated 49 women that need to be treated with tamoxifen for five years to prevent one breast cancer in the same time period,”added Cuzick.
“Therefore, our new results strongly suggest that anastrozole should be the preferred therapy for breast cancer prevention in postmenopausal women at increased risk for the disease, with tamoxifen used for women who experience severe side effects from anastrozole.”
Cuzick cautioned that the preventive benefits of anastrozole are seen for oestrogen receptor–positive breast cancer and for ductal carcinoma in situ but not for pestrogen receptor–negative breast cancer.
This is to be expected, he says, because anastrozole targets the oestrogen pathway.
At the time of analysis, 129 deaths had been reported, with no significant difference in all-cause mortality between the anastrozole and placebo groups.
There had been only five deaths from breast cancer, two among those assigned anastrozole and three among those assigned placebo.
“This is too few breast cancer deaths to determine if anastrozole reduces breast cancer mortality, so we are planning to follow the IBIS-II Prevention participants for longer to investigate this,” Cuzick concluded.
Great excerpt (and news)! As a triple-positive bc patient, I always wonder if such news applies to me, however… and such trials/studies rarely get into the subtype differences. (Triple positives often are resistant to chemo and AI benefits, for example, and yet we end up taking both!).
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