Absolutely agree with you. Im 62 and I don’t have children of my own which makes my decision easier. My husband is my nearest and dearest and he doesn’t want me having years of side effects either. I’m going for quality over quantity too.
None of us know what’s going to happen to us. My mum had breast cancer at 70 and lived to 83 then died of something completely un cancer related. One of her friends had breast cancer around the same time and died 2 years later in a car accident. I think all we can do is live as well as possible and try and enjoy whatever we can in life. I certainly won’t feel cheated or have regrets if I don’t live till I’m 80. In fact I can’t afford to anyway! Xx
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We all have a 50% chance of cancer.
With BC my risk of recurrence is about 15% and taking AIs reduces that by about a third. It is a high stakes risk though as a recurrence would likely be far worse. But 20-25% of ER+ cancers are AI resistant (so if they are going to recur, can recur potentially during the 5 years we are taking the tablets). Plus there is some debate about whether AIs prevent or just delay recurrence. The registrar I saw openly said that many of us are unnecessarily prescribed AIs but they don’t know yet who benefits from them so it’s good sense to prescribe to all. (It’s also cheaper than regular bloods / screening etc).
Ultimately it is a personal decision to weigh up the different factors. For some of us, regardless of AIs, healthy lifestyles etc., we will get a recurrence. We can only decide based on what we feel is right for us. My heart goes out to all of us on this journey - it’s pretty crap, right? having to make these decisions. Am truly grateful to all for the shared stories and tips. Let’s hope we can all live our fullest lives however we feel is best for us.
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I follow Dr Liz O’Riorden. I’ve found her to be an incredible source of information. Being a breast cancer surgeon who has had BC herself with recurrence, she’s a safe place to listen.
I think it’s relevant to note about her that she often posts about how she has struggled with side effects of active breast cancer treatment. Most recently about how she suffers with a burning mouth which must be horrendous.
My point here is, that despite her struggles and suffering, I don’t remember her EVER saying she stopped her treatment. No doubt she wanted to for a better quality of life, but in so far as I’m aware she hasn’t ever done that.
Happy to be corrected by you if I’m wrong.
This forum is for shared experiences, emotional support and is a useful source of information. It is not somewhere to post inaccurate or incorrect medical statements or indeed any medical advice whatsoever, apart from that given by the BC nurses.
Thankyou for listening.
Frances.
Yes I did hi k it makes it easier if you don’t children / dependents to make that decision. xx
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Do think xx
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I’d also love to join this group too if you make one! Or let me know if there’s a thread already on here.
I’ve been making a lot of my own healthy plant based and fish based recipes and feel like it gives me something good to focus on at the moment. Would be great to get more recipes to add to the collection.
I currently buy the seeded sourdoughs from Sainsbury’s or Lidl bakeries, but would like to try my own sourdough starter.
@jayesse I’m interested too in how oestrogen is processed through the body. My sister told me about a beetroot and ginger drink that’s good for that. I’ll ask her for the recipe. xx
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I hear you shame others dont. Been taking Letrozole six years no side effects whatsoever. I think these threads suggesting we stop treatment should be deleted tbh . It’s madness .
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There’s a difference between ‘coming out to others’ that you have declined treatment and ‘recommending that others stop’. The latter of which nobody has suggested. This is a thread for sharing personal experiences only, nobody has recommended otherwise.
There is lots of reseach to say that risk factors include being overweight and inactive, so if people want to share tips on how to lead a healthier lifestyle, and what they are doing about it, thats a good thing.
Lets all try to be positive and supportive.
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That’s fantastic to hear. I’m so pleased for you. I’m pretty okay on it too despite a bit of a ropey start. It gets much easier doesn’t it. That’s all anyone should know, that it’s okay to persevere (with medical advice), and that very often it pays off. If we got a recurrence in the future then at least we can tell our kids that we tried everything …… for them.
Frances x
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That’s not quite correct entropy. Some
posts have been edited by moderators because of incorrect medical statements. For example that AI’s damage the heart, that was removed. It’s really more about the suggestion. People can share their experiences but when the majority of a long thread supports stopping hormone blockers, even after a few weeks, then we are entering dangerous waters. People’s personal choice is their own but I think everyone should take responsibility for their comments and realise that for someone starting out on this journey, those comments may plant seeds of doubt about whether they should take these drugs prescribed by their oncologists. A lot of people tolerate them well and that’s an important message too.
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I had to sign a consent form to have radiotherapy and I think you should have to sign a consent form to get hormone therapy . The Doctors should explain it to you fully - the risks , the benefits the side effects how it works and go through your medical history to make sure the correct one is prescribed . The latter was not done in my case and the seeds of doubt were planted for me right there and then by the people who prescribed them.
There should be a lot more support from the professionals especially in the first year and for people who are struggling . When I said I was struggling the person on my team who responded made my side effects sound trivial whether she meant to or not. She then made a phone appointment for me with the BCN which I waited in all day and the next working day for but they never rang me. I hear in some areas that they are trialling better support for people in the first year which is a good thing .
I don’t think that everyone trawls through every thread on here - for every one person that reads this there will be far more who do not and I think you’re overestimating any potential risk to people. I tried the therapy I usually recommend others to try it. On other threads when people have been struggling with side effects I have tried to give answers that will help them and certainly have not told any of them to stop the therapy . Perhaps you might consider devoting a bit more of your time to supporting people who are struggling instead of using scare tactics. That’s not to say that I don’t think that stopping incurs a risk - just that in my case with my particular cancer and medical history it’s worth taking that risk.
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I’ll be keeping my fingers crossed it works for you.
I think nearly everyone who has posted on this thread has tried some form of hormone therapy and unfortunately for some it wasn’t right for them. I’m sticking with mine but I have to take 4 other medications to combat the side effects. We are all individuals and we all respond differently to medication. Everyone has to do what is right for them.
Please don’t be put off by my situation, I just wanted to share my own experience. I’ve said we are all individual, our ages, health, family history all have implications.
There are lots of threads about hormone therapy, Letrozole, Tamoxifen, Anastrozole or Exemestane. Please use the search icon above if you want to read other threads.
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So, being someone who has to take food into work or pay extortionate prices for mediocre food at the works canteen ( I refuse to). I have bought a microwave veg steamer and have made steamed veg miso ramen by adding itsu ramen, and wok noodles ( and some mackrel - I’ known as stinky fish eater at work lol). All good stuff and instead of relying on coffee to get through a shift, I drink grean tea now.
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Oh no… not one of the stinky fish eaters! I love fish but really hate the smell in the rest room when someone has cooked it. In Summer I have green tea with mint or sometimes pomegranate but it’s good old Yorkshire tea for me for the most part. Xx
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I get a few moans about it but its all been in good humour rather than serious - did kippers for tea this evening lol. I’m pescatarian, have been for 4 years, well before I knew what was ahead. I’m cutting down on the frequency of smoked fish now though as smoked food isnt the best for you ( though it tastes good). Couldn’t live without prawns though, Ill never give them up. I also do tofu meals too which doesn’t smell.
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Yes I love prawns - often take those and enjoy tofu occasionally xx
Hello, I know that mushrooms are well researched (and have long standing use in other countries) and white, chestnut and portobello are recognised as natural AIs - has anyone found a supplement / powder / tincture (preferably organic) for this family of mushrooms? Thanks.
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I have seen research about a lower dose with Letrozole too. The only downside is that even taking Letrozole 2.5 mg, the usual dose, once weekly (yes once weekly, you heard that right) there was no benefit with regards to fewer side effects, which makes me wonder whether 2.5 mg daily is far far too much for all of us if the Letrozole stays in the system working up to 7 days? I will try to find the link and post it, although I already have done so in another thread.
Here is the thread:
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