Take the drugs . Cancer coming back if it is local recurring is one thing . That’s treatable.
Metastasis however is basically incurable and will kill you in the end . Median survival is about 3 years but obviously always outliers but they ARE outliers . It’s not a pleasant way to die . Why play Russian roulette . The new Predict with the latest stats shows mortality has dropped significantly with new treatments including taking hormone blockers for 10 years not 5. My own stats have increased long term survival chance by about 10 per cent since 2019 ie 90 per cent .
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Hi, lizziellama–
My oncologist put me on anastrozole. Also D3 and Ibandronate sodium because I have osteopenia. I had ER negative high grade DCIS. I had a lumpectomy and another surgery a week later to widen the margins. I had 16 RT treatments.
I started the anastrozole and tolerated it okay until about 7 weeks in. My mental health suffered terribly. I’m already on bupropion for depression. It was Nov-Dec and that’s always a hard time for me but I was having suicidal thoughts multiple times a day. I decided to stop the anastrozole to see if that helped. It did. It helped a lot.
I’m still not taking it and will see my oncologist in a couple of months. I’m 67 and not sure if I will go back on it. The first time I saw the oncologist, she was shocked that I didn’t have a bilateral mastectomy and removal of my ovaries. I thought,
“Good grief, you want to hollow me out to add another 3-5% to my survival outcome?”
I’ll discuss it with her and make a final decision then. I’ve done so well with bupropion and I don’t want to mess with that to better tolerate the anastrozole. This journey we’re on is full of questions and decisions at every turn. We all have to do what we consider best for our own situations. Making an informed decision with the help of an oncologist will give you peace of mind with your decision. Best of luck.
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Hi Joanne,
I feel very similar to add also tubular, but 11mm and clear margins and negative SNB.
No dependents either. I don’t have an oncologist but saw the radiographer to discuss next steps as the MDT had put me forward for Tamoxifen and radiotherapy.
I wasn’t convinced about having either to be honest and discussed with the radiographer about chances of recurrence and she said for me it was 5% without radiotherapy and with radiotherapy this would bring it down to 1-2%. So a 3-4% benefit of radiotherapy.
Interestingly the radiographer hadn’t seen version 3 of the Predict test but what alarmed me on there was that over 5, 10 and 15 years it showed a -0.1% of survival and came up with a warning that for patients like me there was more risk from having radiotherapy in terms of survival than not which I found worrying!
I’m not sure if anyone on here has read a book called Oestrogen Matters by Avrum Bluming? He’s looked at all 26 studies done on BC survivors who took oestrogen blockers over those on HRT and there is no difference or a slightly increased benefit of HRT. (Except for one study that has had to be discounted due to the women starting it but having had mammograms)
Even as breast cancer survivors we’re more likely to die of the number one and two killers of women in the UK which are dementia and heart disease so if I can take something that will prevent help prevent those in the future then surely that’s a benefit if it doesn’t disadvantage me in terms of my breast cancer reoccurring?
So basically I’m staying on my HRT but am still undecided about the radiotherapy. I was ER8 and the reason I’m still considering radiotherapy is if I want to stay on the HRT at least it would get rid of any bita still lurking so that my HRT wouldn’t be feeding anything.
I think I might ring the radiographer and ask her to have a look at predict version 3 because we didn’t look at it in the appointment
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My prediction was low for both chemo and only marginally higher for radiotherapy. Due to post surgical complications following lumpectomy the oncologist advised I took the hormone blockers for 5-10 years if I didn’t have the other therapies. Although it was only 8% benefit without the other therapies, I chose to take them I’m on exemestane as they’re for lactose intolerance and apparently have less side affects. I had side effects🙄 but my homeopath made a remedy from the drug which I take whenever I have a flare up. Ive decided it’s best to take them as research shows they’re more affective than either chemo or RT for my type of cancer (ER+8, HER- stage 1, grade 2). I need to reduce estrogen production to try and reduce chances of reoccurrence. Others I know have also received acupuncture but my theory is that those who are not predisposed to any of the side effect conditions will probably not have side effects.bIf you have no allergies or other health issues I’d suggest taking for a year and then review before making any decisions. Might be worthwhile looking at recent studies and research on autophagy too,
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I keep hearing about that book I’ve got it downloaded but haven’t read it . I’m sceptical to be honest and from what I understand the studies done do suggest that it does more harm than good.
I haven’t at any point taken HRT as I didn’t need to - I won’t say I didn’t notice being in the menopause as I certainly did but the menopausal side effects I had from Anastrozole were far worse than anything I experienced during the menopause . When I was younger I took the contraceptive pill for a long time - partly as contraception also for acne and pain ful heavy periods but I regret that now as I think long term it might have done me more harm than good. I’m quite distrustful of anything that is prescribed that is going to meddle with my hormones one way or the other without a concrete reason - for instance if I was hypothyroid I would take thyroxine.
If it had been just menopausal side effects I might have stayed on Anastrozole longer as I did get a degree of control over those after a while though I had a surge just before I stopped it due to humid weather and my hair had also become thinner. It was the joint problems that were the killer for me. I was initially prescribed Tamoxifen by my surgeon but on reading the possible side effects decided not to take it . I think he hadn’t taken into account my retinal vein occlusion and it was later decided that it wasn’t an option for me. My Surgeon was quite forward thinking though and said that if I really didn’t want to try it or didn’t get on it with it it would be reasonable for me not to take it or to stop. One reason for trying was that I didn’t want to be booted of the SMALL trial but as it turns out because my VAE failed and I then had successful surgical removal WLE and clear SNB I able to stay on the trial .
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I suppose it’s different for me in that I was already on HRT for my joint pain and sinusitis and I want the long term benefits of it for my future health.
I’d probably say if you don’t want to read all of the book just read chapter 3 as that’s the evidence of all the trials done so far on this, analysed one by one.
Ultimately, as others have said though we have to make our own decisions on the evidence. My benefit of Tamoxifen was 0.4% so too low for me to risk it even alongside my HRT, I felt, whereas others will take any risk that potentially might improve their chances.
I want longer term health and quality of life which to me, personally, is more important
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I understand why many people take HRT . My Mum was on it for a long time and had very complex health problems including severe autonomic neuropathy that affected every system of her body and which most Drs. she saw did not seem to fully understand. Also intrinsic asthma and various joint disorders . She begged to stay on it and was willing to sign a disclaimer to say that she would take full responsibility for any health problems incurred as a result of being on it for a long time . It was eventually stopped however and her health did deteriorate quite quickly . I understand why you want to stay on it and better quality of life and risk of making existing health problems worse is also why I stopped taking Anastrozole . I just think that what is for one person is not necessarily for another . I will take a look at the chapter you suggest though I doubt I’ll change my opinion but I wish you all the best xx
I haven’t read the book but it creeps up a lot in forums.
My understanding is that it does not say refuse hormone blockers or everyone can take HRT but more that it needs to be a nuanced approach esp for low risk BC survivors or those who are not hormone +.
Some of us fall into intermediate or even high risk so this is why I’m giving my AI a go.
Also, stats are tricky to understand. My PROSIGNA was 11% with hormone (which gives me 5% benefit in this) but it reduces my chance of reoccurrence by 40-50% (so from 22% to 11%)
Not gonna lie. It’s hard & who knows if I will carry on for 5,7 or 10 yrs
Taking each day as it comes and doing all that I can to mitigate horrible side effects (and hope they settle)
Xx
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Thank you all for the advice. I’m still not much clearer on what to do. I see my surgeon this week and hopefully will get a lot of my questions answered.
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It is really confusing , a proper dilemma . Make sure you write your questions down beforehand so that you won’t forget to ask them . If my risk had been higher and my Surgeon hadn’t said that it would be reasonable to stop I would have tried harder / longer with it.
I would say that changing brands has made a difference for some and changing drugs has helped others . I have also met people who don’t seem to have many or even any side effects. I don’t think enough support is given during the first year to people who are starting it - there seems to be more help available in some areas then others. My honest opinion is that it’s worth a try xx
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Hi
I did letrozole for a year and, in addition to the usual horrendous side effects, I then started having blurred central vision and couldn’t drive. I came off that and started Tamoxofen about 6 weeks later - first 2 days non eventful but day 3 and 4 it was worse as I had pains (like childbirth pains) in my back and knee, couldn’t sleep and had to lie propped up on a pillow. Neurofen helped. My chances of it not coming back would have been improved by 1.6%. I run my own business, am sole carer for my 96yr old mother who lives with me and simply couldn’t function. Not going back on it. Hope that helps.
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I hope your blurred vision has cleared up. My previous retinal vein occlusion is why I couldn’t have Tamoxifen and I was also worried I might run into ocular side effects with AI at some point and Hough I’ve rarely heard it mentioned in the UK.
I was advised to give it a go with Tamoxofen but the pain was excrutiating so my consultant said to come off it. I did the Predict thing and it didn’t seem worth it but it’s still a worry. I looked at quality of life and if you simply can’t function you ask yourself what’s the point. I was told that there is no right or wrong answer - really helpful!
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Totally understand where you’re coming from.