Hi, just curious if anyone has said no to taking tamoxifen??. I am terrified of the idea of taking it and cannot see past the array of side effects it can inflict..I mentioned to the onco that I wasn't going to take it and was met with some resistance..and a bunch of figures about recurrence..and sent away to rethink my desision..I have a followup appointment in a few weeks..I feel like a naughty school kid atm, but I am still reluctant to take tamoxifen.

Hi Red1,well I think chemo is way more dangerous and toxic than Tamoxifen! My friend took Tamoxifen for 5 yrs and had no side effects at all.I tried to take it for 3mths and couldn’t stand it- that was in 2003 and I was 47 and premenopausal. I’d had a lumpectomy and radiation.So 7yrs later bc came back in the same breast and I had to go through it all again- mastectomy and chemo. I then took Tamoxifen- I didn’t dare not! This time I was post menopause(54)and it wasn’t as bad. However, I did take a very low dose antidepressant which helped with hot flushes,sleep and low mood.I managed to take it for 4 yrs and then I’d had enough. I was starting to get a few health issues from it.Even if you took it for a few years, there would be benefits.I would suggest getting annual blood tests whilst on it ie. Cholesterol,trygliceride and liver function.Tamoxifen has been around a long time and is very effective(not always ofcourse).It can’t hurt to try it and see if it agrees with you.I’m 9 yrs clear now(or 16yrs from first bc)and I seem to be ok.I get how you feel about taking drugs but they do save lives( look at antibiotics) and we can’t afford to be flippant about bc.By the same token, you are an individual and have to do what feels right for you. Somehow you have to find a compromise that still sits ok with you.

I said no. Was going to make less than 1% difference to my 10 year outcome. I did a lot of reading. Tamoxifen doesn’t prevent cancer, doesn’t cure cancer, can cause cancer, permanently alter cell DNA, can slow the growth of cancer that feeds off estrogen. There was a study looking at the benefits of giving it to women without BC too see how that effected the likelihood of them getting BC later. Interestingly the study was disbanded and no report released.I was 42, a fair way off natural menopause. I wanted quality of life, for as few or many years as that may be. To look after the body parts that need estrogen to function. Keep my eyes, brain, bones, etc working as well as possible. Chemo oncologist said, “you probably don’t have cancer anymore “. Yet he was willing to give me chemo, again for less than 1% possible benefit to my 10 year outcome. I am astonished that something so toxic can be recommended to people in a vulnerable situation for so little or no possible benefit.There is also interesting research regarding alzheimer's and there’s thinking that the reason more women are affected than men is due to the dramatic drop in estrogen after menopause. Given my grandma ended up with alzheimer's I’m keen to defer that as long as possible. Definitely don’t want symptoms in my 50s.There are no guarantees with cancer treatment. Balance what you need to do based on your priorities. There might be a trade off between peace of mind, quality of life, quantity of life. All the the best to everyone with their treatment decisions. Xx

@Red1 I think its a relevant point for sure and you are within your rights to reject the medication if you so wish...my only suggestion would be to be absolutely sure no matter what you decide its best for you and that you feel without a doubt you have done everything in your power to make sure it doesnt come back.I say this because...I was diagnosed at 43 DCIS ER+, I had a lumpectomy and radiation treatment and put on Tamoxifen. I was on that for 4YRS, I had ZERO side effects, 14yrs prior I had irregular cells on my cervix, surgery and been fine ever since, I had no gynecological issues or anything. I did however have a recurrence in the scar tissue at 47, I had to have another major lumpectomy and chemo being Stage 2, Grade 3 aggressive...all this inspite of all treatment? BUT at least I could say I did all I could. I was pre menopause even with the 2nd diagnosis...chemo threw me into menopause and I ended up with a mastectomy with immediate diep flap recon. I dont like drugs either and am so drug sensitive that chemo nearly killed me...tamoxifen pffft nothing. I have been on Arimidex and Aromasin for 4yrs now and its been harder but the only thing I can say is I can say if anything ever happens again...Ive done absolutely all that I could. I wish I had the power to say NO...Im not doing it or taking it...but after my path I can't gamble with it anymore sadly.My Mum also had BC at 40 had zero treatment only a mastectomy/reconstruction and passed away 26 years later with an unrelated cancer...it never returned. I don't have the BRCA Gene as many don't 95% of BC is random...so many mutations havent been found yet...we are a loooooong way from solving it. So all I can say is unless you try it you dont know how it will be, but if you honestly feel confident that no matter what happens in the future and not take it...you have that choice. I wish you all the very best..its a hard road...but my life hasnt been better for where I am right now :) Tamoxifen attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow.M x

I’m on letrozole not tamoxifen, but if your oncologist is recommending it, why not try it with as open a mind as possible? You may not have the side effects you fear, and even those with difficult side effects often stay with it because of the potential benefit. You can always stop if the side effects are too bad, no-one can force you to take medication. But as side effects can vary immensely, perhaps you owe it to yourself to try and see what happens in your case, rather than relying entirely on the experience of some others. Best wishes whatever you choose.

Yep, no harm in trying it - you'll find out pretty quickly if it doesn't suit you. A lot of people don't get side effects & stay on it for many years, even 10 years (both my brother's mothers in law were on it for 10 years & still going strong, both now in their 90s.)Have you been thru menopause already?

Tamoxifen I want to say no | BCNA Online Network

29 Replies

melclarity
Member
6 years ago
I did notice that it said this?? ...However, according to Bernstein and colleagues, few studies have investigated the effects of aspirin use on the risk of certain breast cancer subtypes, and it has been unclear as to whether low-dose aspirin, or "baby" aspirin, protects against breast cancer.

It would be so fantastic if this comes to be, I'm all for anything that works, unfortunately the problem is there are so many things that 'they' say reduce the risk but are all minority studies. Hopefully one day they'll find the answer but seems to be a very slow process.
Michele_B
Member
6 years ago
Hi @Red1,
I took Tamoxifen for just over 4 years and tolerated it quite well. I was 54 and post menopausal when I was prescribe it!
Main side effects for me were: fatigue ( I have still managed to work full time tho), and endometrial problems which required 3 hysteroscopies.
This year my surgeon thought it would be best if I swapped to Arimidex because of increased risk of endometrial cancer on Tamoxifen.
I have found Arimidex okay so far, however had osteoporosis prior to starting so now having Prolia injections to help with this.
Your body, your choice, however for me, even tho the percentage of benefit may not be huge, it is still a benefit and I really want to give myself every chance at keeping this shitty disease at bay.
All the very best whatever you decide.
Michele
Flaneuse
Member
6 years ago
@kmakm I eventually got to view your webcast and yes, they avoided your key questions.

@Red1 I took myself off Letrozole because I couldn't cope with the side effects. My med oncologist tried to persuade me to take Tamoxifen but I said I wouldn't even consider it until after my explant surgery. That's been delayed and delayed, but is now scheduled for 8 Aug and she wants to talk to me asap after that. I'm determined not to agree until I'm well and truly recovered and fit again. At 76, I want quality of life rather than duration. I may consider a Tamoxifen trial after I've done of a couple of key projects I want to achieve. To each of us our own choices!
primek
Member
6 years ago
Interesting on the aspirin wjich if course has its own list of sude effects.
Not much use for those of us allergic to NSAID and also Her2+ interesting it didn't improve that also since still estrigen driven in many cases.
arpie
Member
6 years ago
OMG! @"~Millie~" That is SO interesting with all that aspirin info - tho you DO have to be very careful of not developing stomach bleeds! My brother was on 1/2tab for years (to try & prevent stroke/heart attack - the bane of our family - our dad died at 51 after having his first major heart attack at 40 - I am the only family member who's had cancer!) and my brother ended up with a stomach bleed & now needs regular uppies & downies (NEVER pleasant!)

Tho obviously, the baby dose would be a way lesser strength than 1/2 a full one. (And 3 times a week would NOT be considered excessive I am thinking - and a double bonus if it actually reduces the risk of BC!)

Good find!! I reckon a few of us will be following up on your research!! Sometimes Australia can be a tad 'behind' on some research as we just don't have the population stats for lots of tests etc (compared to UK, where London alone has the same population as the whole of Australia!) Tho in some areas, we are world leaders in research!

I just figured it was a compromise to try the tabs for at least a year or so (if I can put up with them!) - but sadly, there is still a % of us who will go on to develop Mets anyway, no matter how proactive we have been in surgery, chemo, rads & tabs ..... it really is a lottery.

All the best with your decision making xxx I am off to research your links! ;)
_Millie_
Member
6 years ago
@kmakm I'm sorry to hear that. It is definitely a tough road for a lot of people, and the mental side can be very difficult to deal with. That's great you can take a couple of months off at the end of the year. Something to look forward to. Sending good vibes & love. xx

@arpie I applaud everyone that takes a concerned effort in evaluating the risks, benefits, outcomes, quality and quantity of life when deciding their treatment path. It's not easy to figure out which way to go. Mostly the Docs only give you an overview. They're doing their best with the info and treatments they can offer. One interesting part of my journey was an acquaintance who suggested immunotherapy as the way to go.. put me in touch with a cancer researcher here in Adelaide.. and the recommended treatment was in Germany.. at a cost of around 50,000 euros... !! Needless to say, this was not going to be an option. I look forward to the day when immunotherapy is offered more widely here in Australia.

For those that are interested, there is some interesting research on Asprin. The seems to be both sides, those who say it may offer benefits, and others who debunk it. When it comes to cancer treatment, there are a lot of studies.. but no cure yet.

Overall, regular baby aspirin use reduced the risk of breast cancer 16 percent, the study says. But the more significant finding was the risk reduction for developing HR-positive/HER2-negative cancer, the researchers said.
Aspirin not only reduces inflammation, but it's a mild aromatase inhibitor," Bernstein said. Aromatase inhibitor drugs are used to treat hormone-receptor positive breast cancer in women past menopause, since they reduce the amount of estrogen circulating in the blood, and the estrogen fuels the tumor.
"This is really very exciting work," said Sushanta Banerjee, a professor of hematology and oncology at the University of Kansas Medical Center. In his research, confined to the lab and animals, "we found that aspirin has the capability to destroy the tumor-initiating cells that can lead to breast cancer."
https://www.webmd.com/breast-cancer/news/20170501/low-dose-aspirin-may-lower-risk-for-common-breast-cancer-by-20-percent#1
Daily low-dose aspirin almost halved tumor growth in breast cancer mouse models

The researchers found that the aspirin killed the majority of breast cancer cells, with those it failed to kill left unable to grow.
According to Dr. Banerjee, the team found that the aspirin blocked the self-renewal activity of the breast cancer cells. "Basically, they couldn't grow or reproduce," he explains.
https://www.medicalnewstoday.com/articles/295304.
Taking low-dose aspirin at least three times per week may reduce women's risk of breast cancer by up to 20 percent, a new study suggests.
https://www.medicalnewstoday.com/articles/317248.php
Best wishes to everyone. xxx
arpie
Member
6 years ago
@millie - mine was also only 1% chance of reduction of recurrence as well, but because my cancer was aggressive and is known to recur and even come back as Metastatic Cancer - I decided to try the AIs for at least a year & see how I went. I lasted 6 weeks on Letrozole, 6 months on Exemestane and am now on Arimidex (2 months so far.) My side effects from Arimidex is way less (so far) than the previous two mes - but Exemestane took 6 months to 'work up' to the same as Letrozole in 6 weeks.

My surgeon said he would respect my decision to go off it, if it was causing extreme discomfort - as quality of life IS a very important factor. Right now, I am also taking medicinal cannabis oil (with the knowledge of my Onc) that reduces my side effects, making it more bearable - so I will continue taking the meds for the time being, being checked again in 2 months by my Onc.

Having said that - some people have no side effects on Tamoxifen, Letrozole or Exemestane - everyone is different.

As @melclarity says - it is more about giving it your best shot in case of a recurrence, and you may beat yourself up if you hadn't given it a go.

I figure, even if I give it 1-2 years, it would be better then not taking it at all.

Good luck in your decision making xx
kmakm
Member
6 years ago
Thanks @Millie, I wasn't aware of the similar receptors on the other organs. Fascinating!!

I'm poor to average. Grief, anxiety and depression are my companions along with a variety of Letrozole side effects. I have better days but mostly bump along the bottom. It's a rough road. But as I'm playing in a 10% risk category I have to keep taking the AI. Looking forward to my oncologist advised two month break at the end of this year.

Here's hoping the next year is a good one for you. K xox
_Millie_
Member
6 years ago
@kmakm Tamoxifen is a receptor blocker, but other cells in the body with identical oestrogen receptors to the breast will also get starved of oestrogen – the ovary, pituitary gland, lining of the vagina.

Blocking of oestrogen in organs with receptors the same as the breast, e.g.ovary and pituitary glands, interfer- ing with the menstrual cycle and causing hot flushes and vaginal dryness as at menopause. These side effects are common at least initially. Depression, like that at natural menopause, may also be caused by blocking of oestrogen action in the brain.

all from
https://www.bcna.org.au/media/2220/10-beacon10.pdf

I’m doing pretty well thanks, but next Sat will be 12 months since diagnosed. It’s been a brutal ride, but fingers crossed this year will be smoother sailing ⛵️ Hope your doing OK too.

Xx
melclarity
Member
6 years ago
@Red1 I too have a family history of cardiovascular disease in fact my Dad only passed 1yr ago, there are also mental health issues too. My percentage was only 1% but I think the hardest thing has been for me? is that I couldnt live with myself if I didnt do everything recommended and I had another recurrence. Its got to be what youre comfortable with. The thing is the benefits far outweigh the negative and honestly I had zero side effects in 4yrs on it. Even with being on AI's now apart from fatigue and a little pain Im the best Ive been. To be honest tamoxifen is the least of it all, i found treatment far worse in all respects and something I'd do differently in hindsight.

The problem is we only have the treatments we have which is so frustrating, and NO you dont get thrown out in the cold at all. I attend my Surgeon every Jan and have my mammo and ultrasound and every July is the Oncologist. Mind you to me I think I should only see the Onc if I need to as its a waste of time. They'll continue to monitor you 6 monthly or yearly depending on the complexity of your diagnosis.

Having said all this my Oncologist wants me on the medication but if I choose not to he supports it too and this is the Oncologist who was on the latest webinar.