Forum Discussion
Red1
7 years agoMember
Tamoxifen I want to say no
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.
29 Replies
- melclarityMemberI 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_BMemberHi @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 - FlaneuseMember@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! - primekMemberInteresting 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. - arpieMemberOMG! @"~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@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."
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
- arpieMember@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 - kmakmMemberThanks @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@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 - melclarityMember@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.