Just wanted to reach out and to say thank you for starting an interesting discussion, and to say I am sorry you have been battered by some of the responses. I have no skin in this topic - I have metastatic TNBC and have no hormone receptors on my cancer. But I have also been faced with making decisions about treatments with risk profiles. I have suffered kidney, thyroid and lung damage from Pembrolizumab and nearly died. I don’t regret my decision to take it because I had no other real options for my cancer.
Oncologists tend to work to standard schedules and I think downplay risks. Everyone has to consider their decisions in the light of their other health issues and priorities. Your decision may not be someone else’s but it doesn’t mean it’s not valid.
Hang on a minute, since when was mine or anyone’s opinion not welcome on this forum.
[edited due to community guidelines] you’ve over stepped the line in being judgemental and making me feel that my comments were offensive. I’m sorry that my sharing my reasonably positive experience on AI’s was offensive to others. I felt it may provide some reassurance to some in that for some people, they are tolerable, even after a bad start as was my experience. You evidently don’t think my experience is helpful.
I think an awful lot of the posts and threads on this forum could be interpreted as putting people off certain treatments. As someone previously stated - reading all the posts about side effects from various stages of treatment could be enough to put others off having that treatment themselves. Should we be making those posts private too?
Everyone who has shared their experience of giving up AIs has explained why they had to do so and how they came to the decision with their medical team about stopping. Nobody has advocated refusing AIs from the very outset - everyone has given them a go. All have acknowledged that for a lot of people they are absolutely fine. Nobody has tried to normalise giving them up.
There is a lot of reference on here to “going against doctors’ advice” but all of us who have given up the AIs have stressed we have made our decisions with our medical team and it hasn’t been a “stand alone” process.
I do respect your concerns but I also feel that if you look at the forum in the wider context there are an awful lot of posts that would be far more influential in making people give up treatments than this one - details of surgeries gone wrong, side effects, not being able to access support etc etc - all capable of putting people off the various stages we have to endure. If we made them all private threads only out of fear that the open debate could stop someone having a treatment then there wouldn’t be much of a forum left.
Several people have voiced their right to express an opinion - I advocate that absolutely but it works both ways and people who have had to decide to stop a treatment have just as much right to discuss it and express their opinion as those who haven’t had to stop it.
One person said, “these drugs save lives”. That is true for a lot of people but not for everyone. As you will have read, for some of us they have made life unbearable.
Thank you for sharing your story. I can only imagine as a single mum your worries about the consequences of stopping Letrozole. But as has already been said it’s an individual decision and these decisions are not made lightly. I’m so sorry to hear about your secondary diagnosis in the spine and hope you have a plan in place.
@JoanneN I’m sorry to hear of your loss and that Mother’s Day is a challenging day. I don’t think you’ve overacted, your comments are always well measured. Having others try imply that this thread is trying to stop others from hormone therapy is misguided and when you have struggled with the drugs, it’s understandable you want to express views.
I lost my mum in Oct 21 and my brother in Nov 22 and I was left to deal with the estate including the family home. I had to exchange contract the first week of chemo to be told if I died, I would be breaking the contract and my family would be liable! Can you imagine how that made me feel? I nearly delayed chemo because it scared the life out of me. But my team assured me I was unlikely to die and that I needed to start asap.
@jayesse I decided not to comment any more on this thread yesterday evening hoping it would settle down. But it hasn’t. I’m sorry that you have had to say several times how bad it has been for you and that you were suicidal, which seems to have been overlooked by some.
Everyone has a right to say their own views but not to tell others what they should and shouldn’t do. We have to be careful with our words so as not to upset others. It’s not about removing Freedom of Speech, it’s just about being considerate of others. We have all had a breast cancer diagnosis and we don’t know everyone’s background story, their family history or health conditions.
P.s. I tried to create a new private thread for those of us who have had to make the decision not to take AIs. Could I work out how to do it? Nope!
Anyone got any ideas how to?
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 !
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 ?
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 synical 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 sensored. 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.
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.
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.
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.
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.
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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