Thank you. I hope you are able to have a good day today.
Big hug xx
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I’m confused when did I say your comments were not welcome. I just thanked you for reconsidering your wording.
Everyone has a right to say what they want but not to tell others what they should do.
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Menopause and Cancer podcast ep105 . They talk to an oncologist about side effects of AIs and tamoxifen but they do discuss treating all women to prevent a few recurrences .
There aren’t really any stats about recurrence because nobody seems to monitor what type of cancer someone who has a recurrence had originally .
The TRAK er trial is trying to monitor how many women who didn’t have chemo , have been on AIs minimum 6 months , had lymph positive or tumours over 5cm to see who gets a recurrence .
The thinking is that women with node 0, small tumours won’t get a recurrence but that’s not the case😢.
I hate taking Anastrazole . As soon as I was disgnosed ( early stage), I knew they would be the worst thing . I have a underactive thyroid , so my hormones are shattered anyway.
I’m 11 months in and I’ve just started with dizziness . The GP is referring me for all sorts of tests but I know it’s the meds 
.
It’s a well known side effect, listed on thd information leaflet .
I know 5 or 6 women who are on hormone therapy and none of them are thriving . It’s awful that we have to make these decisions without support .
I did have an Oncotype ( I had private medical insurance that paid ). It was 18. I’m post menopausal , so no chemo but that score is borderline medium risk recurrence , so I keep taking the meds . Along with exercise , not drinking and smoking . Which is what I did pre cancer !
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I’m so sorry @klf that you are having these side effects and that you “hate having anastrozole”. I really admire anyone who can stick with them despite the problems they are causing them. It’s such a tough road to take.
I am sending you a hug and hope the side effects get easier with time. X
And giving up smoking and drinking - that deserves a medal too. I luckily haven’t smoked for 18 years (giving up was awful) and have never drunk, so haven’t had to factor that into my cancer wellness. But I have a very sweet tooth and after not eating much of anything during chemo I have started eating again and been totally unable to stop eating chocolate (one particular type). I know I shouldn’t be eating it but I try and stop myself from buying it then ask my husband to go and get it for me! So well done you for your willpower xxx
If you’d like to have a private conversation with more than one person I think you can start a private message with another user then add people to the conversation .I’m not sure if there’s a limit to how many people you can add ?
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I think some posters have proven the point of why ( although many women have taken a reasonable approach, weighed up the prose and cons, and on balance elect not to take hormone-blockers) there is a need for support. Its because some people can’t accept others decisions, feel they have to change their minds to their own opinion, and so we have to take on some people’s disappoval. That takes energy that is in short supply, hence support by empathetic people is welcome. There comes a time when its appropriate to give up trying to bend others to your will.
Health professionals work under conditions of informed consent. That includes oncologists etc. They understand that ultimately, its everyone’s right to make their own mind up once they have the info. Only you have your current lived experience, nobody is in your exact shoes, with your exact social circumstances.
Being alive, as opposed to dead, is not a panacea for some, as being alive, but wishing you were dead, or feeling like death, is not living. The holy grail is not life at any cost.
Its quite cynical to say a forum, where people share their similar experiences, shouldn’t exist. We can’t put google back in the box, or the Internet, though some get damaged by what is read. There will always exist people who fear things before trying them, thats just how they are. If a person is put off meds without trying them, as they have read about side effects, that is not our responsibility as a forum, that is not a reason to be censored. Drug companies don’t omit patient info leaflets that are in every drug packet, informing of possible side effects, for fear that patients won’t take them, it would be ilegal. Chatting about giving up hormone blockers with other people is as valid a topic as any other.
I take the middle ground, I think anyone should try the drugs first, see how they feel on them, then decide. Most effects are reversible once off them, so no harm in trying - I say, most, and my heart goes out to some who may have experienced undoable effects (blood clots, endometrial issues, osteoporosis etc). I may think its foolish not to try it, but I respect fear is a powerful emotion and would never throw shade or cast blame for how they feel. We have all suffered in one way or another by being diagnosed with cancer, so we all are deserving of support.
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I was never a smoker and a light drinker but I’d stopped years ago ( thank you thyroid!).
But I do like a bit of chocolate x
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Moving on, I’ll hold my hands up to probably having drunk a huge amount of alcohol over my prior lifespan, compared to the average person. In many other ways I toed the line, lead an active life, ate healthily, gave up smoking over 16 years ago. My liver and kidney function are fine thankfully, and I am mostly well behaved with alcohol, though have got a liking for alcohol free drinks - it was as much about the taste for me. I will never be tee-total, but mostly stick to 5 units or less per week. Have increased my gym efforts. I also take magnesium, glucosamine and vitamin-D supplements. Not to stave off cancer, just trying to keep my older aching joints and muscles at bay.
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Hi everyone,
It’s clear this is a topic which has lots of different points of view, and that some have even found the discussion to have triggered some strong emotions.
Everyone’s experience is different, and everyone is entitled to their own opinions.
We would like to remind you of our community guidelines to keep conversation kind and respectful of different opinions. You can find out more about our community guidelines and how we moderate the forum here: How and why we moderate & forum guidelines - Welcome and how to use the forum / How to get started - Breast Cancer Now forum.
Our specialist nurses are here for you if you have clinical questions or concerns.
They are also here for you if you need support, as we know hormone treatment and the decisions around it can be overwhelming. If you ever need someone to talk to, please do reach out to our nurses on 0808 800 6000. Even if you just need a chat or if you’re feeling low, they’re always happy to talk things through.
Sending our warmest,
Alice
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I didn’t tell others what to do. I was just sharing my experience on hormone therapy. I wondered if it may give some perspective that some do tolerate it quite well. It’s tough for anyone that doesn’t of course. I’ve read more times than not on the forum about people choosing to stop taking it and very little positivity about people who do tolerate it. I wonder if that may encourage others to consider stopping too in the belief that it’s not really beneficial. That concerns me actually. Thank you. I evidently haven’t put my views across in a way that they won’t be misinterpreted. I’ll leave it there.
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Thank you so much for your kind and measured insight. You have very eloquently hit the nail on the head.
Massive hug. X
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Show me a person who has never done anything that they know they perhaps shouldn’t or have done it to excess ! We are all human and pushing our boundaries is as much a part of life as anything else. And let’s face it the naughty things are often jolly good fun!
It’s usually illness or financial worries that make us have to reappraise our lifestyles and make the changes we need to but I hope we can all still have some fun! Xx
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@jayesse you picked a good title as it happens, which was clear in its topic ‘no hormone therapy-support’.
Quite reasonable to think that it could be support for people who have decided to not take hormones and realise its a tough decision, as opposed to people who do take hormones despite the bad side effects- there are already forums for that, which people in those circumstances, can join, this topic is not for them. This is why I don’t post on TNBC, or for younger people - I didn’t have that kind on cancer, and I am sadly not young anymore. I also don’t post on male prostate cancer forums - because I didnt have that either. I rest my case. Some people mistakenly post in the wrong places, in the wrong way.
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Hello Frances @Frances55
I hope you have the same sunny weather that I have.
Thank you for clarifying that you were trying to put some balance into the conversation.
I agree with you that these forums generally don’t have many people posting positive experiences (on all aspects of treatment). I think it’s true what someone else said - that most people only use forums when they are looking for an answer to a difficulty or going through a rough patch, so the majority of posts have a ‘natural’ bias towards the more negative side of things.
Thinking about what you said about it mainly being negative and the need to balance out with some good stuff too - perhaps we could all consider sharing some of the positives we have experienced on new threads - to show others that not everything is negative. Mine would be that surgery was absolutely fine for me and all my fears were unfounded.
If we can put some positive threads out there it would help balance out the weight of the ones that are presenting the drawbacks, the difficult choices we have to make, the fears etc.
Do you think that this might be something worth doing? X
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Yep, there’s no point in totally sucking the joy out of life. I for 1, will be down the pub tomorrow night, only for the 2nd time this year so far. I haven’t decided how much I’ll be drinkinking -it will most likely be more than 5 units, but that’s my choice. Will I enjoy it ? - heck yea. Will I have a hangover- hopefully not, as I do apply common sense and know my limitations and experience has taught me, its not worth it, I’d rather feel healthy the next day too.
Life is about balance and happiness, and it will make me happy.
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Go for it @entropy !!!
I’m have a well earned curry out tonight. It’ll play havoc with the IBS but it’s got to be done. Xx
Enjoy, I love a good curry - usually prawn or veg for me, as I’ve been pescatarian over 4 years.
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Hi jayesse,
What a brilliant idea. Bless you. I agree that sometimes people only use the forum when they are going through their dark days, and what a wonderful source of support it can be. You’re quite right there are positive aspects too as you say, successful surgery and quick recovery, that type of thing. It’s so tough this journey but I think it’s nice for people to hear that they will and can get through it and that for many, life can return to some semblance of ‘normal’, whatever that is! Enjoy the sunshine wherever you are, and the daffodils too.
Xx
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Please can you let me know how I can set up a private group chat for people who have had to stop hormone therapy and would like to support each other. Thank you
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