At the moment I am waiting to meet with Radiotherapy and discuss it and Letrozole. I am thinking I may not take either as I react so strongly to all drugs and couldn’t do any analgesics. Its a very tough decision but its one I don’t want to make. Just a single dose one time taking a drug can have effects that last many months for me. So I am being cautious around any extreme intervention. I feel my body needs healing and not more onslaught of drugs of radiotherapy. I sort of cant get on board with it so far. will wait to see what oncology say!
I so understand your concerns about reactions to drugs or other medications, as I get strong reactions to drugs and most medical interventions. I have been looking outside of the NHS around other things that do work but not wholly. So far found things that only work in certain % and I need more assuredness in what I do, so it maybe a mixture of products I take to help with dumbing down the receptors. This alongside other therapies. I don’t feel its all the cause of the hormone receptors, although they are involved and its about opportunity. I recognised I got unwell late December 2023 after Covid. That’s when I started to get a lot of viral things come up and I feel viruses can drive cancer along, alongside these hormone receptors. Messing up how our bodies should work. So I am looking a things that interrupt viruses in breast cancer. This doesn’t make me right but I have to have something there if I cant take drugs or radiotherapy. My whole body, mind is shouting at me not to do these interventions, as they only interrupt for a few years and do not wholly cure. So I am also looking for a complete lifestyle intervention that improves my life. Like you I followed an holistic approach to life since my early 20’s and I am now 76 and realise for me that quality of life is more important that longevity.
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The Surgeon said generally secondaries are usually more obstinate and that’s when they look more deeply at the genes. It’s that the body has already had a go at trying to knock out the first cancer and if it comes back it can be stronger and harder for the body to resist. I don’t think this is so in every case but it is in some cases. I have known of older ladies who have lived with breast cancer for 20 years. they go and have little treatments of chemotherapy and it keeps it under control. Not curing as some cant be but they live normal active lives.
My thoughts on skipping eostrogen blockers is please don’t. However hard going it feels better than having stage 4 breast cancer metastasis in your bones and organs. So please continue to take it to reduce the risk of it coming back and if in it for five or ten years continue with it. Cancer is a sneaky fucker and you might feel better off the drugs and then bam !!! It’s found a way back . It’s working its way through your body and then it’s stage 4 and then your at a different diagnosis which is living on drugs to contain it but it’s degenerative and life limiting. For anyone Er &pr+ please take everything your oncologist recommend for hormone shutdown and if you can have your ovaries removed xx
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Have you had your ovaries removed @louisea77 ? X
There are other things which can be done to reduce eostrogen in the body too. Body fat produces eostrogen so keeping at a healthy weight is important. Exercise helps to metabolise hormones as well as a high fibre diet. Not drinking alcohol is an unpopular one, but the fact is alcohol increases eostrogen and then the liver prioritises processing alcohol before hormones meaning levels can be elevated for a while after drinking.
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@southwest123 & unfortunately healthy body weight, fit, fibre eating, Non-alcohol drinkers are diagnosed with hormone positive breast cancer all the time & wonder what they’ve done wrong. These good health factors may together help reduce risk but if cancer wants estrogen to grow it will find a way regardless. I’m only 50 & dreading the blockers & what this will do to my quality of life for this next decade when I felt so young & full of life before I was diagnosed. However with stage 3/grade 3 I have to try to do anything I possibly can to stop this coming back as all the good health stuff had zero impact on me being here in the first place (not to say I won’t continue with those too because they are supportive of my general health!)
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Sorry, I did mean these things in addition to the hormone therapy. The only person who can decide what is right is the person themselves but for me personally that is to take tamoxifen. As far as I am concerned it is a non-negotiable. I recognise that’s easy for me to say as I am fortunate and don’t have any side effects but I do wonder if that is because I am ‘lucky’ or because I regularly exercise and don’t drink.
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Agree there are other things that reduce oestrogen receptor sensitivity. I am using several different things at the moment and agree exercise is considered very important to deal with fat content and weight increase + the other things already mentioned.
there are also plenty scientifically tested nutritional products that also have good response.
Important to take things that help the oestrogen/progesterone travel down the right detoxification pathways, is also essential. There are a host of other things out in the world if the medical drugs are a problem with side effects. You cant do just one thing, it is important to mix several things if you can’t do the drugs.
So sorry to hear you are going through, not only the cancer but also mental health issues to cope with as well. That is harsh medicine. You do sound a very courageous person, sbee. I am debating whether to have 5 rounds of radiotherapy, as I react strongly to any intervention and not good on drugs of any sort. Anaesthetic was awful. Couldn’t take analgesics. I think you will find a way through. Hope is important for all of us. None of us know what is around the corner. The only thing we can be sure of is “change.” It comes no matter whether we want it or not. So I try to embrace it, as much as possible.
You know yourself best and what you can and cant take. Changing things for any of us with cancer can have profound effects. I ask myself often, ‘what can I change in my life’. I have been asking what is important to me and I am answering this. That’s important for me at this time of treatment.
Sometimes tiny bits of a drug do more than the large doses. Its not about more is better but what is better for your body and how it functions. Some power is taken away from us by having cancer. We need medical people to step in and make good decisions for us at a critical time but I felt I also needed to take steps to be a part of this healing journey, by possibly taking less of a drug, as it may suit me better. Doing what my body needs and not what NHS England is telling me that I need to be on something too strong for me to cope with. Each one of us on this forum is finding out own individual way. I feel you are going to do very well, whatever you do and take. xx
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As a follow up i have now been seen by my breast cancer team and i am taking 6 weeks off from the anastrozole, i cried and the nurse gave me a hug xxx
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It’s been recommended by my oncologist several times that I can have that done and I’m going to have it now so also reduce risk of ovarian cancer. Also saves the NHs giving me the injections every month to suppress ovary function.
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I find it terrifying how contradictory all the guidance/advice is.
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I find it terrifying also contradicting information but don’t google or go off plan from what your oncologist has set for you. They are the experts and have reviewed your individual cases and explored the treatment options. I stick with what they tell me to do and however hard I find it in letrozole and Abemaciclib and zolodex these drugs are giving me another 10 years protection from cancer returning. I know first hand my mum has metastasis breast cancer everywhere. These treatment options were not available to her ten years ago and she is now on palliative care and I am hoping to get to 60 cancer free in all of the drugs I’m prescribed and my hope is that following the oncologist treatment plan however hard is I will get to 70 cancer free. Xxx
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I’m starting letrozole shortly but so nervous given how bad my hot flashes are already & don’t know what will be left of me if they get much worse on it?! Taking pregabalin which has reduced the intensity a bit & having acupuncture, eating so well & drinking all the water, no booze, no spicy food-all the things they recommend. They make me feel so unwell. The only suggestion the menopause Dr had was CBT which I feel I’m doing already as I imagine myself in a cold plunge pool when they start. I really want to do well on letrozole but can’t see how I could go about life normally if this is all about to get even worse. I will try though as I’m only 50 I just hope I get some quality of life with it.
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I couldn’t disagree more. I think it is good for patients to gather as much information as possible so that they are able to work in partnership with their medical team. The days of ‘doctor knows best’ and ‘just do as you’re told’ are surely long gone? Your oncologist is quite understandably fixated on keeping you alive for the longest possible period of time and that is as it should be. However patients differ in their needs and requirements. Post treatment I was crippled by the drugs and made the decision that as quality of life rather than longevity was my goal, I would discontinue a regime that offered a maximum of only 3% extra protection. I only discovered this through my own extensive research and therefore my decision was an informed one.
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Not everybody gets the side effects so it is worth a try. I suffered horribly. Switching to Exemestane helped a bit but after a year I decided quality of life was my goal. Let’s hope you are one of the lucky ones.
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@teddy271 So sorry it was awful for you & I hope you’re doing well now. I’m just not fancying my chances given how bad the flashes are from going off of HRT over the last 7 months x
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Oh god, tell me about it. How much I miss HRT. Bloody cancer, the gift that just keeps on giving. I have this dream that in about one hundred years time medics will look back and say ‘they did WHAT to people?’ Of course I am grateful for treaments that have saved my life but they are still barbaric, both in the actual treatment and the side effects of the so-called medication. I remember the day my oncologist told me, proudly, that letrozole would give me ‘up to 3% more protection.’ I just stared at him, disbelieving as I had it in my mind it was a definite barrier to cancer returning. After more than a year of not feeling remotely like myself, I told him to come back when he could provide something that offered at least 30%! He laughed. I am of mature age so quality of life is my goal but I admit I might have made different choices if I was 30 with three young kids. Still, it amazes me that women my age who are reduced to shadows of their former self, carry on taking these dirty drugs.
@teddy271 My photo memories flashed up today with a “benefits of estrogen” graphic I had taken a few years ago when I was trying to ask for HRT so I could get through a working day without wanting to explode with the sweats…read it today & just think wow & all of those things now become risks if we’re going to drain the body of the stuff. I agree with you if I were older I’m not sure I’d go for it but at 50 I think I have to try although it’s terrifying to think the next decade could be spent feeling awful all the time. Hormones-what a thing!
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