Hi all, just wanted to get thoughts about not taking hormone blockers and Bisphosphonate. If there was anyone who’d decided not to take and if so why not. And like wise those that have decided to take them and why.
I have just received my oncotype test result which came back as 31 so am about to start chemo and then radiotherapy but really unsure about the hormone blockers. I am just menopausal.
Thank you.
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I’ve been finding it hard to get any information on not taking hormone blockers. I am 76, have completed my surgeries and radiotherapy, been prescribed Tamoxifen, which I have had in my drawer for nearly three months now, I can’t bring myself to take them. I’ve read everything I can about Tamoxifen & how it reduces the chance of cancer coming back, but it doesn’t stop it 100%. I look at all the possible side effects, I know lots of women tolerate it with few side effects, but I can’t accept what it might be doing to my body. To me, quality of life is more important at my age so I’m going to take my chances as I feel healthy & fit. I’ve got my 3 month post op appointment on the 21st with my oncologist, who will advise me again to take the Tamoxifen. Every morning when I wake up I ask myself, should I take it, but so far I haven’t. I am fortunate at my age that I have never needed medication for anything as I have always been healthy, maybe that is why I won’t take them. If the cancer comes back as a secondary cancer, I may regret my decision, it’s a difficult one.
Hi @nicnac17 here is a long thread discussing exactly what you’re asking. There are arguments for and against. It is quite long but you can give it a go and see if it’s worth getting to the end. Just click the pink header.
I think @balchik is right - the decision on whether to take it can be very different depending on your age. Older women tend to take their chances. Two other quick points - 1. The people who tolerate endocrine treatment well (and there are many) tend not to come back to the forum but just get on with life, so you’ll see a disproportionate amount of posts from those who don’t tolerate it well and 2. You have nothing to lose by trying and giving it six months to see how you get on. The side effects, if you have them, dissipate quickly once you stop the drug. Finally you have to determine how risk averse you are because, if you were to get a distant recurrence, treatment tends to be much harsher. Having said that, it is estimated that 30% decline to take it or give it up so you would not be alone.
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It is a difficult conundrum. It’s a shame there is not more research into the pros and cons of taking hormone blockers. It would be great if we had a crystal ball to see what the future might bring. I’ve had breast cancer twice with 26 years between the two diagnoses and at the age of 72 wonder if it is worth the side effects of Exmestane and Letrozole, not so much the immediate side effects, but long term ones like high cholesterol and osteoporosis. In the end we all have to decide on whether it is quality of life rather than quantity. Really not an easy decision.
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I read that 29 women have to tak AIs for 1 to benefit and 46 for 1 on Tamoxifen. Not sure if these have been verified but unfortunately, we don’t know if we are the one that benefits. And some take them and still get a recurrence. It’s a very personal decision, Im on month 4 of Anastrazole. Seeing how I go . I’m 56 but my Oncotype was 18 ( funded by insurance cover as NHS wouldn’t pay ).
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I feel the same as you. I too haven’t had any hospital/NHS visits until now and I’m not a keen pill taker and here I am having to make all these really difficult decisions I don’t fully understand and feel like I’ve got to play Russian roulette with my life and choices. I was on HRT before my cancer diagnosis (now stopped) & really understand what all these hormones do for the body and stopping oestrogen just seems crazy and all the possible effects on other bodily functions and then taking something to combate them continues to make it seem crazy to me. And yes just like you quality of life is hugely important but at 54 am I too young/too old/crazy/stupid/fool hardy.
All the luck for 21st.
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Oh my goodness, yes that’s difficult to read. I am 54 with a score of 31, my oncologist told me
I’m in the grey zone. I’ve kinda got my head round chemo but the hormone blockers and the bisphospanate is really doing my head in! Best of luck.
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Oh my days me too, why isn’t there more research on this? Why aren’t there nutritionist/HRT/physio/fitness/mental/wellbeing specialists within each cancer department to advise and work with us and the oncologist. My long term affects really worry me and having taken HRT for those very reasons and understand why I need those pesky hormones keeping those long term affects at bay are very important to me. As you say a conundrum, thank you for replying.
I have taken letrozole for 2.5 years after breast cancer diagnosis 2 which came a mere 19 years later than bc diagnosis 1 for me. I am now 69.
After 2.5 years of drug use, have started to get hot flushes and mood swings, two symptoms I did not get when I actually went through the menopause up to age 54.
That is in addition to stabbing pains in my ankles, knees, hands, poor grip, weakened bones, poorer balance plus now high cholesterol and high blood pressure neither of which I had pre taking this medication.
Old people are not valued by the NHS. If you are old and ill you are a bed block blocker. At the age of 69 I qualify perfectly for end of life as does my mum age 97.
Hospital docs are keen to boot anyone chronically ill out of hospital into a so called care home where they are soon diagnosed as “end of life” , especially if the person gets any memory loss and poorer general health.
Care homes put each “old” person into their own single room, but these rooms generally offer little stimulation. They will have a big tv but in my experience it is often in a place where the resident “old person” cannot see it.
Also the staff only come to a room when an alarm is set off and the tv is tuned to stations without input from the residents.
I find them very depressing environments
Seagulls are you going to stop taking the hormone blockers if the quality of your life with all the pains and stabbing aches you mentioned are impacting that quality. You mention symptoms you didn’t have in Peri or menopause have now cropped up. Or will you continue to take them with the belts and braces scenario?
My oncologist has said if I don’t take them that’s fine but if BC comes back in years to come will I think what if! Well of course I will but constantly playing Russian roulette with my choices I feel with whatever choice I make, do chemo, don’t do chemo I’m always going to think what if. I know there is no crystal ball but trying to work my way through this myriad of medical jargon and trying to work out what’s best for me is scary as fudge!
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I’ve made myself dizzy these past few days reading so many different opinions. I’d settled in my mind not to take Tamoxifen, now I’m so worried if I get secondary cancer will I regret it, but what if no cancer comes back for 5 years I’ll be 81 & will have had 5 years with good quality of life. I think we should be told a lot more about these drugs, rather than you must take it & lots of people tolerate it. I’m going to have a break from googling anything as it has made me so depressed recently worrying about it. I don’t really mention my cancer to family & friends now since I got the all clear, but the fears & worry don’t go away do they? Every morning it’s the first thing on my mind, would I still feel like this if I took Tamoxifen, will the cancer come back only incurably? Ah well, another day to get through.
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Have you been through the Predict model with your oncologist? This will give you an indication of improved survival if you have various treatments, including hormone therapy. It is not there to predict recurrence, however there is a statistic included about how many people of one’s age and histology are likely to survive over 5, 10 and 15 years and of those who don’t, it indicates whether they die of breast cancer (basically those that go on to develop stage 4 metastatic cancer) and those who die of something else. It is something your MDT will have included in your recommended treatment plan. It might help to focus your mind on whether to take it or not and would be the basis for a further discussion with your oncologist.
The bottom line is, and we have all been through this, there is just no way of telling who will get recurrence and who won’t. It is something we all have to learn to live with because an Er+ cancer can come back any time, even years later. When I first joined the forum two years ago I was in a state of near hysteria about mets but someone said to me that the only time I’ll have certainty that I’m not going to develop mets is when I die of something else. Which, unfortunately, is true. So I decided that it’s impossible to live a quality life with that level of fear so, in time, I have pushed it to the back of my mind. I take Letrozole because my tumour was Er+ 8/8, so an AI is extremely effective but, so far, haven’t had a panoply of side effects. If they develop, I’ll reconsider. It comes down to a binary choice for which each of us has to take responsibility. Other than the statistical models like Predict or NPI, there is nothing much to help you decide apart from your level of risk aversion.
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I only took anastrozole for about 6 months and couldn’t tolerate the side effects so gave it up. 4 years later I got breast cancer again. I take exemestane now and side effects slightly better and not sure if I’ll manage 5 years of it. I don’t regret not taking anastrozole because I’m 75 and preferred a better life x
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I am reaching 4 years of Letrozole and it has been increasingly depressing. I had my treatments during the Covid lockdown and ongoing treatment access problems, and had the barest of follow ups and advice - really just the annual mammogram and a brief telephone call from the oncologist for the first 2 years. I have never heard of Predict and was just told that I should take Letrozole for 10 years, and the biophosphates, daily (and it was a huge dose). Both of these had an increasing impact on my daily life. On the 2nd oncology call, I questioned the biophosphates and was told that most women reduced to weekly after a couple of years (nice to know). Chemo sent my mild neuropathy rocketing to chronic, and that hasn’t improved in 4 years. Letrozole caused depression, weight gain and tiredness, itching, and digestive problems but I thought I had to be stoic to survive, even though my quality of life was plummeting. Finding this forum has been a life-saver. I have used the Predict model and now have an idea of the life expectancy whether or not I continue with Letrazole and that is huge. I agree that people have to make their own decisions based on their unique circumstances, but my experiences show that not all oncologists and cancer care teams give the correct amount of advice, and Covid didn’t help. Reading such honest posts has enabled me to question whether more of my side effects are due to Letrozole and not to the neuropathy. I can now make informed decisions. I am 73 now and used to be so active and self-motivated - perhaps I can get some of that back. Thank you all.
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Hi @madoolitle I was diagnosed July 2022 so whilst my treatment was impacted by the Covid backlog, it wasn’t actually during the lockdowns. How surreal and lonely that must have been for you. Well done on getting to four years on Letrozole, very many don’t. My oncologists weren’t all that either and I soon came to the conclusion that they follow the NICE guidelines rigidly and actually cannot tell you anything you want to hear. My first appointment was “this is what’s going to happen about rads, here is your prescription for Letrozole. Next”, the second was a phone appointment with a registrar, so a junior doctor who had zero experience, and then I was discharged back to my surgery. I had no idea about Predict myself until people I talked to whilst waiting for rads mentioned they’d been through it with their oncologists. So I managed to get another call, once again with the Registrar, and asked six questions. All the answers were “we can’t answer that, there are no guarantees, it’s impossible to say etc etc” and having done Predict with her over the phone (v2.2) she continued to insist that I should continue. So I get the suboptimal interactions with oncology. In truth, I stopped it for a few months but I can’t take the stress of taking a risk so went back on it. I am coming up to 69 and have been on it almost 2 years. I’ve been fine on it but don’t kid myself that this may not change over time. If it does, I will review my thinking because I completely understand the need for QoL as we age. What do you think you are going to do?
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It is great that you don’t have the side effects, and if that was the case for me, I would continue without hesitation. However, in addition to the debilitating side effects (which did worsen over the years - it didn’t happen all at once), my cholesterol is now sky high and I am having trouble standing straight when doing my version of walking. I am petrified of getting a ‘dowagers hump’. I live in a different area now, but was under a 5 year care pathway so I have travelled back to the original hospital for the mammograms but have a different medical practice. I have a prescription review in 2 weeks and I am going to ask the GP for his thoughts on my withdrawal from Letrozole, and if he doesn’t want to commit to anything, I will ask for a referral, but I think I have already decided to take the risk. The Predict model has given me the confidence. I will stop after that review and if I get a referral, talk about it further. My treatment was extremely isolating and I was separated from family for 18 months. I had chemo first as the tumour was large, then surgery and then radiotherapy, and the continuing Herceptin injections for months. I was totally alone and although I coped well with the treatments, I struggled with eating properly and pined for someone to just offer me a cup of tea and a chat. And of course there was the ongoing risk of catching Covid and getting supermarket deliveries for even essentials. It was a difficult time. But I did a lot of crossword puzzles!
i feel like Hamlet to be on letrozole or not to be on letrozole that is the question. Whether it is nobler to face the slings and arrows of outrageous fortune, or by opposing, end them. well that’s probably not how Shakespeare put it but I do feel like I am in a bit of a tragedy where you worry you die, you don’t worry you die.
Seagulls
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Good for you @madoolitle, I’m glad you’ve come to a decision that you feel comfortable with. My GP, who is very good, won’t countenance a discussion about Letrozole. She is a senior partner at the practice but will not go against the Senior Oncologist at the hospital and, of course, the oncologists are so concerned with stopping cancer recurrence, they don’t seem to consider our health in the round. Just bear in mind that Predict is not foolproof, it’s an amalgam of thousands of individual stories which have been averaged out but, as I have said before it’s as close an indication of what our outcome might be as we are going to get. I’m glad the suggestion has helped. I wish you a speedy return to your energetic self and many cancer-free years ahead.
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If I may continue your theme, Seagulls, my favourite quote from Hamlet is “if it be now tis not to come. If it be not to come it will be now. If it be not now yet it will come, the readiness is all”. What “it” is in our context is not clear!
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