Why is there so little conversation around rejecting treatments (particularly AIs / Tamoxifen) ??
Considering how many risks of resultant serious conditions they carry and how life-impacting their side effects can be (necessitating yet more drugs to combat them), I am surprised more people on this forum don’t express the preference of saying ‘No’. It doesn’t mean we don’t still fear recurrence or metastasis, just that it’s a gamble preferable to drug damage. Maybe people who have made that choice aren’t likely to be checking into a cancer forum any more? I would be interested in anyone’s opinion on the matter. 
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Hi @MistyK there are loads of discussions about this very topic on the forum albeit many from before the forum platform changed last year (although I think there is still access to some of them via the search facility, try searching on the Hormone Therapy stream). There are some ‘robust’ exchanges of views (well, as robust as things get on this supportive forum). I have been involved in a lot of them over the past 15 months. Many women tolerate endocrine treatment reasonably well and want to do everything they can to prevent recurrence. Age plays a part, with some older women choosing quality over potential quantity of life. Prognosis also plays a part with many who have a small difference in Predict scores deciding to take their chances. It’s worth remembering though, if cancer does metastasise, the treatments that keep one alive have much more unpleasant SE than those that come with endocrine tablets so it is arguable that it’s better to take the “pain” up front.
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Hi MistyK, More than happy to debate this one with you. I have a high risk of recurrence but rejected Paclitaxol before and after mastectomy as couldn’t risk peripheral neuropathy. I’m now on Letrozole and taking it six days a week. I plan to experiment with taking it every other day and also to try the 6 weeks on 6 weeks off approach. I am putting up with the side effects at the moment(insomnia, vaginal atrophy, stress and urge incontinence) as I’m hoping it may shrink my 8cm uterine fibroid. Quality of life is everything to me but I also have a high risk of recurrence as tumour was high grade and her2 positive initially. The plan is for ten years. I have asked for a review at 5 and dont plan to go beyond 7. I am also planning to review whether to continue with Herceptin after 6 injections as I have comorbidity which raises my risk of heart failure. I have also rejected Zometa. Nothing is black and white when it comes to these decisions. Just an awful lot of grey. Love Tulip x
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The fear of a stage 4 diagnosis is pretty powerful for most of us and we weigh risks versus rewards in that regard. Most people decide the rewards of endocrine therapy outweigh the risks so they go on it. If they try it and can’t deal with the side effects that’s where most of the debates start from.
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Hi Mistyk I have been taking letrazole for just over a year now. When I was first diagnosed and given my treatment plan letrazole was always going to be offered. I had planned to refuse it. However after my lumpectomy and radiotherapy I thought differently. It was a decision that I didn’t take lightly, but it’s always been my choice. The hospital always said it was my choice. I felt I needed to have tried every possible option to stop cancer returning. If it does I know I’ve tried everything. Maybe I’m lucky but after the first 3 months my side affects calmed down and apart from hot flushes I’m fine. As far as I’m concerned that’s a small price to pay if it helps keeps the cancer away.
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Hi @Tulip29 I’m intrigued about the 6 week on 6 week off regime with Letrozole. Have your team suggested this or something from another source?
Hi MistyK,
I chose not to have chemotherapy as the side effects out weighed the 4%benefit it gave me.
I had radiotherapy, then because my menopause symptoms are so severe and frankly debilitating I have now also chosen not to take letrozole.
My choice my body.Quality of life to me is more important than lenghth,but then I am in my late 50’s,if I was a bit younger I would probably have chosen differently.
All the best and take care.
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Hi Tigress, no my team did not suggest 6 weeks on 6 weeks off. They want me to have everything by the book. What the oncologist did say was that if i didnt tolerate letrozole i would be taken off it for 6 weeks and then put on a different ai. This indicated to me that it was ok to come off it for 6 weeks - what the oncologist called a washout. Then i read about this on another post on this forum. I would not recommend it to anyone but it is something i may consider further down the line. My team did tell me that if i get a recurrence it will be in the first two years hence why i am sticking with it for now. They know i only take it 6 days a week and didnt bat an eyelid. Love Tulip x
Thanks @Tulip29 I’ve had a couple of 6 week breaks when the joint pain or low mood has got too much so know that the side effects do calm down during that time. I was offered a change from Letrozole but it seems to me that the point of all AIs is to eradicate oestrogen and that is what causes the problems so I decided to stay on Letrozole. I was also offered Tamoxifen but that seems to be the worst of all worlds for someone in their 60s as I am. Highly unlikely to complete the course though but I didn’t have a high risk of recurrence so will probably get to the point where I’ll take my chances. Good luck with whatever you choose to do, I know it is a huge conundrum as you feel damned if you take it because of the SE and damned if you don’t because of the anxiety of recurrence.
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Hi everyone, it’s good to have found this lively debate. I am age 60 post menopausal, have had chemo & then surgery. Radiotherapy is still to come in Feb, I’m on 3-weekly Phesgo injections until Sept as I am HER2 +ve & most significantly here, I am in my third week of taking Letrozole! I do have several of the named side effects - urinary urgency, insomnia, low mood, but I also know all of these are worse during the first 3 months of taking, so determined to tough it out. I’ll let you know how I get on, or perhaps you’ll hear from me sooner! As a rule I’m taking the avoid recurrence at any cost approach, but I really appreciate other viewpoints expressed here.
Pink love & best wishes to you all.
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Hi, thank you for bringing this up as I am having this dilemma at the moment! I was changed from Letrozole, which I took pre SMX surgery, to Exemestane, post surgery. I have returned to work full time & am finding it difficult to cope with the side effects (hot flushes, fuzzy brain, broken sleep). In Predict, the benefit of taking medication is less than 3%, so I’m going to have a conversation with the Breast Care Nurse about having a break at first to see if things improve, with a view to stopping altogether. I’m 54.
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Good morning all.
I just thought I’d throw my tuppence worth into the mix……
I’m coming up on my 2nd anniversary of diagnosis. After my mastectomy I was intially started on tamoxifen but the side effects were so severe my oncologist put me on a break. Discussions then started with regards to trying Letrozole. But, first they needed to check my menopause status. During this time I had very little input from the breast care team and actually started feeling like they’d abandoned me. So, I researched and read everything I could lay my hands on. I also used the NHS Predict tool. I spoke it over with my partner, my mum, my niece and my friends, I wanted to hear varied pro’s and cons etc.
In the end I chose to take my chances and go drug free, much to the disdain of my BCN.
I honestly feel I’ve made the right decision for me.
Yes, I risk recurrence but I know of women who have taken hormone therapy and had their cancer return, sometimes 10yrs down the line.
We are all on the same journey but are each an individual. What works for some doesn’t for others.
I just feel we need to listen to our bodies and dig deep to find what suits us best. We can follow the recommendations but in the end the path we take is ultimately our decision.
Good luck and best wishes with whatever choice you make. xx
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Dear Mistyk
I did look into the risks of taking Letrozole compared to the risks of not taking it and made a personal choice to take it based on my personal risk appetite and my health at the time. I think these types of decision come down to personal choice and asking lots of questions
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Dear MistyK
I too had wondered the same thing regarding people weighing up everything and making the decision to say no - not a light decision to make.
I’m 46, found lump last May and was diagnosed last July and had a lumpectomy (16mm Grade 3 PR+++ ER++ HER2 negative) with clear margins and the lymph node biopsy was clear. My Prosigna genomic test score came back high at 82 which meant chemo was recommended.
I spent ages deliberating what to do, but I am not one to rush to the doctor anyway and believe in the body’s natural ability to heal. I really didn’t want to subject my system to all the toxins.
A lot of what you read on the forum is women expressing their main belief to just throw everything at it - even wanting chemo and worrying when doctor’s haven’t recommended it in their case - suggesting a conspiracy that it might be a money saving move on behalf of the place they are being treated. I wish my doctors had told le I didn’t need chemo!
I decided against it, honestly believing it was the best thing for me to do. I also didn’t want to take the hormone blocking drugs and in the end decided not to do the radiotherapy after all. I believe I would have been having that treatment for 2 weeks at the start of this year had I decided to go ahead.
Anyhow in mid December I found a new lump near the site of the initial lump. I finally had this checked out and a biopsy was taken on the 18th - I am due to get the results this Thursday. When the doctor spoke with me, and examined the new lump (8mm) he talked about how I hadn’t followed the complete recommended treatment plan…
I have no idea what I am going to do now, or what the new treatment plan will be…
The doctor did say that a mastectomy might be the better (only?) option if I am not going to do other treatments again this time round, but I guess I will know for sure after the appointment on Thurs.
I think I am more scared now than I was 6 months ago (when I had initially thought I would have the op, do radiotherapy and take the hormone blocking drugs - as they had made it sound so easy / straightforward) This was until I got all the information leaflets and read about the possible side effects for the proposed treatment plan.
I had looked at all the figures with the doctor, and by doing all the treatments, I would reduce the percentage chance of dying within the next 10 years from 18% to 12% - which can be seen as just 6% or 33% better off depending on how you look at things…
It scares me more than anything that I might subject my body to all the chemicals and then still end up with the cancer coming back again anyway, and my body also dealing with the possible long term side effects of the other medications at the same time…
Luckily my friends and family have been supportive and understand I wasn’t making any decisions lightly, and who can say what they would actually choose were they in my shoes unless in the position themselves… there are so many factors at play… I have only told a few people so far though about the new lump…
Out of interest, would you mind saying how old you are? Also it would be interesting to know more details of the type of cancer.
Wish me luck with the next stage in this journey xxx
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An ongoing dilemma to which there is no ‘right’ answer.
What is encouraging is the amount of women who now ensure they are fully informed and then spend time evaluating the medical advice and scientific data against their own personal circumstances. For many years one just took whatever treatment/drug the doctor dished out without question. I know some people advocate ignoring Dr. Google but I disagree and believe that knowlege is power and that when in the grip of cancer, one needs to be working in collaboration with the medics, rather than being a passive observer.
Whilst it is pretty widely known that chemotherapy isn’t a walk in the park, there are still patients unaware of just how little extra protection Letrozole and its ilk actually provides. I did my homework whilst I took the drug for several months, during which time I lost everything that made my life meaningful. Painful limbs, sleeplessness, hot flushes and an overwhelming lethargy. And I was doing all this for a an increase of a rather pathetic 2% on the chances of my getting cancer again. Like other respondents, quality of life is my lodestar but I am early seventies. Yes, one plays the odds but having had surgery, chemo and radiotherapy, I feel I gave it my best shot and I wasn’t prepared to give up the rest of my life so that I might enjoy a little longer of such an uncomfortable existence.
I fully understand those who value longevity above all else, I’m just not one of them. If the cancer comes back, then I’ll throw whatever they can give me at it again and hope for the best. At least I will have had several enjoyable years. Yes, my oncologist is a little sniffy about my decision but his raison d’etre is to keep me alive. Now that he understands my views on quality over quantity, I hope he will cut me a bit of slack. However, I do wish oncologists generally would be more upfront about how hideous the side effects of Letrozole can be for many people. They seem to me somewhat dismissive of the affect it can have on whats left of our lives.
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Thanks, Tigress.
Yes, each of us a variation on a theme, so always a different set of priorities to order.
Regarding metastasis treatment being worse to endure, I hear you … and the oncologist who said the same. This is a real worry for me, since I had extracapsular spread (1 affected node only), so did some cancer cells break free and float off? Also, radiotherapy was late due to NHS backlog, and hormone treatment delayed by myself. (I was ER+8 and PR+8 too.)
At the outset, I determined to throw everything offered at keeping cancer at bay - double mastectomy, axillary clearance - rather than working blind with radiotherapy alone (for which I paid, with lymphoedema in my arm/hand), followed by belt and braces radiotherapy. (No chemo, as OncoType DX score low.)
When it came to the hormone therapy, I postponed for 4 months, then took for 10 months, but whereas I was led to believe symptoms would settle down (as we’re always placated with), the reverse was true and by month 7, I feared the drugs more than cancer because I was becoming more and more debilitated and less and less like the whole me. And in any case, there are no guarantees that they will save you.
But the real point here is, even more than suffering unpleasant daily side effects, I feared the surprisingly high risks of serious, permanent damage and even life-threatening conditions that these habitually-strongly-promoted drugs could bring on. In the interests of frank debate, I will state that these are always played down by oncologists … of course.
The various AIs all do the same thing at the end of the day - suppress oestrogen - and yet this little hormone is vital for the normal functioning of many bodily processes. Tamoxifen may work in a different way biologically, but the effect is the same - of rendering oestrogen impotent in all of its functions.
Also, I had invasive lobular cancer, and as some know, so little research has been done into this very different subtype of breast cancer over the last 50 years (when enormous strides of progress have been made regarding ductal breast cancer treatment), and as a result there is still no specific targeted treament for it. This means all these drugs that have been developed using ductal data might well be useless against lobular anyway.
Thank you for the heads up about how I might dig up old threads on this issue.
Wishing everyone luck, and most of all, peace with their choices. Ultimately, that’s the most important factor.
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I am so sorry for all of you that have had horrendous side effects. It’s such a difficult decision to make in regards to whether to quit or stay on and I hope all you have the support of your doctors regardless. For indeed quality of life does matter. Longevity isn’t worth much if you feel horrible.
I do want to add though for anyone who is contemplating endocrine therapy and later finds this thread and feels frightened. There are many of us who are on endocrine therapy who do very well with it. In other words apparently lack of estrogen doesn’t mean anything to how we function physically. Now it will usually have an effect on bone health but luckily there are drugs that help mitigate that. Anyway I have had no real side effects despite being on both lupron and letrozole and I am far from the only one. We’ll see how I do as time goes on but I suspect whatever I see would have happened eventually just because menopause was in the cards for me since I was never eligible for HRT even before my diagnosis. But I feel great, if anything even a little better emotionally since highs and lows thanks to hormone fluctuations are over. And I know I’m not the only one since I see lots of people like me post in response to enquiries like this. Anyway just some hope for any person who fears going on endocrine therapy.
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Hi Mir! I am so sorry that you might be contemplating a recurrence. I hope it’s not and that you get good news and can continue on as is. I thought though I might perhaps offer another way of looking at treatment. Yes it is chemical we are putting into our bodies. But everything is a chemical. Even water. There is no way to avoid them and what all of us must do is figure out which chemicals will be better for our long term health. If you do indeed have a recurrence it may be that the chemicals of treatment are going to do you more good then harm. Will there be harm? Probably. But once you have cancer you know your body is forever prone to it. There is no making it immune. It just is what it is and the chemicals of treatment might help kill it so that your good cells have a chance to repopulate in place of it. If you don’t kill off the cancer it will eventually take over because that’s what it does. It’s a cell after all and everything that nourishes your good cells nourish it. Anyway I wish you so much luck if you have to make a decision but I truly hope you don’t have to.
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Heartfelt thanks to each and every one of you who has felt motivated to respond to my request. And so swiftly. I am very grateful for all your perspectives.
I’m also responding to Tigress, Pentland_girl, mir-ie and teddy271 with specifics and a little further debate, so if you’re interested, check those too.
Postscript:
I am 63 now.
Had diagnoses (yes, a different cancer in each breast, simultaneously), surgeries and radiotherapy from mid - end of 2022, took AI Anastrozole from Jan - Oct inclusive 2023 and 2 bisphosphonate infusions (zoledronic acid) 6 months apart during that period.
Tried to have a full and frank debate (before taking any decision) with 2 oncologists (one private and one NHS), neither of whom would engage properly on the level, and just trotted out the same old superficial patter. They did not allow me to work through my notes systematically, so I came away with most questions unanswered. I think it’s time for consultants to climb down from their pedestals, acknowledge that we are - or want to be - more informed, and to bone up more on their subject so that they are prepared to have a proper discussion !
Most of what I know of my own specific cancers I’ve gleaned from my pathology lab reports which I had to request independently (obtained via comms on the secure access website of your own particular NHS Trust). Not one clinician, of any grade, even mentioned I had lobular cancer (which is kind of important), much less explain it to me (until I flagged it up).
After 12 weeks of ‘washout’ (total abstinence) it’s such a relief to be able to use my dominant hand again now that it’s free of the crippling pain, to feel normal again, and so much more motivated, enthusiastic, rested, energetic and mobile! Just saying.
Am I scared? You bet. I’m human. But it’s time to focus on improving my general level of fitness, to get on top of diabetes Type 2, and keep my lymphoedema to a minimum.
Thank you again and good luck to each of you. x
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Pentland_girl - Thank you!! Abandonment, self-research, NHS Predict, being cold-shouldered by the medical profession for your viewpoint, heeding our poor old body’s signals, digging deep (so very deep) … you are my echo. I’m not the only one in the frozen wasteland ! 
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