No Hormone Therapy - Support

[cows_bits]

I’ve resisted posting on this thread since it was started as it clearly stirs up a lot of strong feelings.

I’d like to tell my own story; I would stress that it’s my story, and not intended to influence anyone else in their choices.

After surgery in December 2024 I was prescribed Anastrazole, which I started taking prior to 5 sessions of radiotherapy (which ended in early February). I soon started experiencing pains in my hands and feet, and other side effects came along as time progressed. I was content to deal with those physical side effects, and employed various methods to do so, although the SEs weren’t pleasant.

From the start of taking Anastrazole I struggled emotionally. I felt extremely low, wept at least once on most days (often more frequently). I’m generally a person who presents to the world as having a half-full glass, but that was no longer the case. As time went on I felt worse and worse; my common sense, logic, pragmatism and stoicism went out of the window. I became increasingly upset by my radiotherapy tattoos (ridiculous, I know). I finally realised I’d hit crisis point when I decided I could get rid of the tattoos by cutting them out (I didn’t, fortunately).

The following morning I tried to ring my BCN, only to hear a message saying “I’m out of the office; don’t leave a message, but ring this number”. When I rang that number I got an out of office message, telling me to ring my BCN if it was urgent! That was when I rang the Breast Cancer Now helpline, and instantly received really helpful advice, saying there would be no issue with stopping the meds temporarily, but I should speak to my team regarding the long term. I did that when my BCN rang me back 11 days later.

I have since had a routine appointment with my Oncologist, and she has given her blessing to discontinue Anastrazole, saying that for me the potential benefit is low, and far outweighed by the extreme side effects. I am therefore not going against medical advice, but rather working with my Oncologist for my best outcome.

I am 71, and would rather have a few good years than continuing to feel so very unwell. If cancer comes visiting again I will deal with it but, in the meantime, I will get on with my life.

[jayesse]

Thank you for posting @cows_bits
You are not alone and around 30% of people have to stop hormone therapy for a variety of reasons. Very few stop on a whim and without discussion with their treatment team. Like you I had a very serious mental crisis when on letrazole and, as I have already documented, felt suicidal. I stopped with the total support of my oncologist who realised I was more at imminent danger from my mental health than at danger of recurrence in the future.
I simply cannot understand how anyone can accuse another person of being “disgraceful” (as Susanmanchester termed it above but which has been edited out by the moderators as being outside of community guidelines) if they have to make a choice to stop. I have a friend in my village who had an unprecedented reaction to chemotherapy (causing symptoms very like Parkinson’s that were totally uncontrollable and meaning she was in hospital for weeks while the treatment team tried to fathom out what was happening). She has been left being unable to walk unaided and still having episodes of shaking uncontrollably. The oncology team have talked her through her options and she has said no to trying chemo again. I wonder if the same people who refuse to understand that we have a right to choose re hormone therapy would also label my friend’s decision as “disgraceful”.
We are lucky that we live in a democracy and not in a dictatorship and are gifted the right to make our choices. That includes whether to accept treatment or not. Nobody who has posted on here has stopped without good reason and without consulting their team. Sadly our being compelled to stop has been misinterpreted by some to mean we have gone against medical advice, which none of us have. Despite continued posts reiterating our position and evidencing our reasons and emphasising that we made our decisions based on personal reactions to the medicines and with the support of our oncologists, these same people continue to sit firmly on their high horses and take objection to our right to speak of our experiences and discuss the decisions we have had to make.
There is an inherent danger in sitting on a high horse: its height can blur our vision and prevent us from having a clear view and real understanding of what is happening down at ground level.
My dear mum had a very wise expression; “The longer a person sits on their high horse the harder it becomes for them to dismount”.
Xx

[teddy271]

Well said, Jayesse. Some of the judgmental type posts on here remind me of Lockdown and how you were judged as a bad lot if you didn’t automatically agree with every authoritarian diktat issued. Of course, we now know that questioning was much needed, and so it is with these drugs.

Many of us simply cannot tolerate them and take the decision to stop. My experience is that these deeply personal decisions are carefully researched and the pros and cons meticulously thought through. I have never seen a post where someone was encouraging another to abandon the medication without good reason.

I found life intolerable whilst taking them and because I prefer quality over longevity, I stopped. Why anyone would regard my personal cancer path as somehow an inducement to others to stop, is a mystery. Each must do what they feel is right for them and the idea of removing support on a website seems like the equivalent of being put on the naughty step!

[teddy271]

May I suggest you spend your time worrying about yourself rather than suggesting that those who choose a different path are somehow letting the side down. These drugs are not a mystery and if a woman has found her way to this thread you may be pretty sure that she is doing her research. The ladies on here are pretty savvy and keen to share their experiences precisely so that they may make informed decisions.

[jayesse]

Thank you @teddy271 for your support.
It is very reassuring to know we are not alone.
Wishing you all the best xx

[Susanmanchester]

My sister died because she stopped taking tamoxifen . In two weeks I am attending the funeral of an old friend who has died of secondary breast cancer. Perhaps these experiences make me anxious and understandably so . All I can say is it was made clear to me six years ago I had to take Letrozole for 10 years . I have done religiously with no side effects . If people find me getting upset as a result of people suggesting women shouldn’t take AIs too much I’m sorry but lives are at stake here . Strange that gets moderated . Shan’t post again

[teddy271]

Your sister very sadly died because she had cancer, NOT because of taking or not taking a drug. Secondary breast cancer is the threat we all live with and it strikes those who take hormone therapy drugs and those who don’t.

Although I have chosen to discontinue my drugs, I have NEVER advocated that anybody else should do so. Each of us chooses our path by weighing up what we want out of life. For my part I choose quality rather than longevity but the majority of people will choose a different way.

This is obviously a subject you feel strongly about and you are one of the fortunate in that you do not suffer side effects. You might find it more helpful to develop your understanding of why people discontinue this line of treatment by perhaps finding out just how intolerable life can be when the side effects are devastating. My life is important to me and I have no wish to die BUT I would rather live freely in the years I have left than simply exist as an old woman crippled by pain.

[naughty_boob]

I’m sorry your sister has died of bc and you are going to another funeral. Many of us have experienced family and friends that have had cancer and it is upsetting that sometimes the treatment fails them. I have lost a family member 6 months ago and another who was diagnosed late and there is no treatment available, so are now on palliative (not bc but two different cancers).

We have to accept that people make their own choices in life, they are the only one’s that have to live with that. Many have made it clear they have made this decision in conjunction with a doctor.

[jayesse]

I’m sorry that your sister died of breast cancer but you have no way of knowing that having hormone therapy would have changed her situation. Sadly many people who take AIs get recurrence too, as I know from my aunt who took them but still died. I’m sorry if acknowledging this reality is scary for you but it is a truth that cannot be hidden.

Nobody who has posted on here has suggested that “women shouldn’t take AIs too much” and none of us have suggested that we or other people should “go against medical advice”. We have merely explained our personal situations and the side effects/reasons that made us stop. We have every right to do that and to support each other by discussing our situation with people who share the same experience.

You keep repeating that you haven’t had any side effects (lucky you) and that has enabled you to stick with the medicines for a long time but it simply isn’t the case for a lot of us and your “one size fits all” philosophy towards the taking of AIs and refusal to acknowledge that we are all individual, can’t all take them and have a right to choose re our treatment shows a lack of empathy and understanding towards those of us who can’t take AIs. You have constantly and consistently been unwilling and/or unable to put yourself in other people’s shoes.

Put it like this - how would you feel if you posted that an element of your treatment had made you really unwell and you had to stop it because of the side effects and needed a bit of support having had to make such a difficult decision but instead of sending you support people started:

1. haranguing you for stopping that treatment and implying that you could have stuck at it (because they were able to so you could have too)
2. suggesting you had done it without the involvement of your treatment team even though you had repeatedly documented that your treatment team were involved
3. Suggesting that by asking for support you were paving the way for other people to make “misguided” choices similar to yours
4. refusing to acknowledge that you have a right to make the choice about your treatment
5. using language that brands you as “disgraceful” for not having that treatment and making you feel bad about yourself as a result
6. Asserting that you are responsible for failing yourself by not having the treatment and
7. Accusing you of failing others who they think (without any evidence to back it up) you might influence into the same decision as your own.

From my own perspective, this is what you have done to me. You have made me feel bad for trying to reach out to other people on this thread who have been trying to genuinely support each other.

I think your posts have been moderated not because of your assertion that taking AIs can be ok for some of us and that you are afraid that people may put their lives at stake by not taking them but because of your tone and language towards those of us who can’t take AIs and want to be able to share our experiences in what should be a safe space.

As I have suggested before - rather than continuing to try and make people like me feel bad about having given up AIs - you would be able to reach far more people with your message of good experience on them if you were to put a positive post about AIs elsewhere on this forum and leave those of us who genuinely want to support each other on our journeys without AIs to be able to do so without being made to feel bad about ourselves.

[entropy]

Would you say to an overweight person who took tamoxifen for years, but still got a recurrance “its your fault as you didn’t lose the weight by eating healthily and exercising enough”? That is also advice that any Dr would give, and arguably, in many cases reduces risk of death more than tamoxifen can - its not a wonder drug.
If you wouldn’t say that, then you for some reason have taken it upon yourself to cherry-pick just one thing that can reduce risk out of the many other risk factors that can have even greater effects. I trust you must be doing all the other things that reduce risk already, especially as they, on the whole, result in only positive side-effects. If not, wouldn’t that be just you not following advice too? Don’t worry, most of us would understand that developing an athletic, fit body to lower risk is easier said than done, so we wouldn’t castigate you for failing to manage it. Not in the way that you have done to people who choose not to have certain treatments.
If you think taking a pill that makes you feel ill, trumps a healthy mind and body through exercise and happiness, in the fight against cancer, you are misguided indeed. If people can no longer exercise due to side-effects of treatment, that is a conundrum to solve.

[Susanmanchester]

I do suffer from anxiety and PTSD for which I take Sertraline and have also had counselling . It’s rather sad you and others choose to be so aggressive and unpleasant . Particularly as my reasons for being 100 per cent in favour of AIs are so personal and tragic . My family cannot of course be 100 per cent sure the fact my sister died at 51 leaving two young children was because she refused chemo and stopped taking tamoxifen . She was told the cancer was caught ‘early’ yet three years later suffered a horrible death from secondaries in her liver . Recurrence as we all know is one thing metastasis another . But this awful experience has undoubtedly made me ultra cautious and fearful and on occasion maybe evangelical for which I apologise . But the only reason is and was because I don’t want women making a decision which could put them at similar risk .
So please stop these personal attacks because it’s turning into bullying . Women need to know side effects are not inevitable I hope others will continue to make that case However . I make no apologies for still wondering if my sister would still be here had she had the recommended treatment and not wanting that to happen to others .

[JoanneN]

I have also lost colleagues to secondary breast cancer as well as prostate and bowel cancer . Maybe I will come to regret my decision to stop at some point but I honestly don’t think so . I stopped rather quickly but then had a long time to reconsider my decision and talked it through with the BCN team who supported me .

It must have been awful for you to lose your sister and then contract breast cancer yourself - I’m so sorry and losing a friend to it as well now must be quite triggering . I hope you have a better week next week. Xx

[Susanmanchester]

Thank you x

[entropy]

I’m glad you now acknowledge that your sister didn’t die because of stopping tamoxifen, even though you stated previously that she did. It was a poor choice of words, and was an emotional,
incorrect statement. Outcome links are not as direct and straightforward, never can be, there are hosts of reasons why some people die, while others achieve NED. It really isn’t worth fighting people on one aspect. Understanding and respect is all that is required, and if that can’t be given, there’s nothing else to say really.

[teddy271]

Oh dear you seem completely unable to see anyone’s point of view except your own which is a bit daft on a discussion forum. You are now accusing others of doing exactly what you have been doing to them - being aggressively censorious.

Curiously, you also seem to feel that nobody but yourself researches the subject of cancer treatment. My experience is that all the women on this forum are well aware of their options and are simply seeking to share their experience and gain from that of others. I find your comment that ‘I don’t want women making a decision which could put them at similar risk,’ really rather patronising. It is not your job to ‘want’ or ‘not want’ people to take certain courses of action. Self-evidently people make their own choices based on their own experience and it is inappropriate for you or anyone else to try to shame them into accepting treatments just because you believe them to be efficacious. One almost gets the impression that you would like to see cancer patients strapped down and forcibly fed the drugs that you have such faith in!

My view is simple. If the side effects ruin any quality of life and if longevity is not your goal, then the small amount of extra protection they give is not worth the destruction they cause. But that is my view and I would always encourage others to give letrozole and its ilk their best shot. And then make their personal decision.

[teddy271]

Well expressed. This lady has clearly been badly affected by her sisters death and I am sure she has all our sympathy. But this does not give her the right to proscribe choices for others. I am always very careful when discussing these drugs because my decision to discontinue is personal and may not be right for someone else. I stopped taking them several years ago and have never regretted it. If the cancer comes back tomorrow, I will still be of the same opinion because whilst I was on them, life was intolerable. I remember when the oncologist told me that they could offer ‘as much as 3% extra protection,’ I nearly fell off my chair. I told him to come back when they provided 33% or more and he laughed because he knew I had thoroughly researched the subject.

Since discontinuing, life has been pretty good and I have felt like my old self rather than being bent double with pain, hardly able to use my limbs and in the depths of despair. Perhaps it is because Ms Manchester has not suffered side effects that she is seemingly unable to understand the utter misery of those who do. She should ask herself whether anyone would abandon drugs that (allegedly) give some protection against a recurrence of cancer if there were not a very good reason

[entropy]

I hope that this thread can help Susanmanchester to let go of her residual anger she holds over her sister’s decisions. It’s palpable in the words she has used at times. Anger keeps a person stuck in grief, and it’s a difficult place to stay in. A thread like this may help people, in similar situations, understand why their loved ones make the decisions they do. Staying angry at their decisions around it, must be exhausting.
It’s not as simple as ignoring Dr’s, it’s not a black and white choice of death vs no death. Life does not hang in the balance over a pill. We all have our individual reasons for discontinuing treatment, showing our thoughts behind it, might help others to be less rigid and tunneled in their thinking, and also to let go of their grief.

[jayesse]

Hello everyone

I think perhaps it’s time to drop the discussion around whether it is right or wrong to stop AI treatments as we have all said how we feel now and it is clear that we will never all agree.

People are getting upset with each other, me included, at a time when we should be showing each other support. I personally would like to be able to move on from that and share just support and uplifting stories with other people who are in the same position as me (which was my intention in the first place).

We’ve all said our bit. I don’t want to be made to feel bad because of the choices I have made by people who don’t understand them but at the same time I don’t want them to feel bad either. So I think it’s time we drew a line under the discussion of the rights and wrongs of stopping now and return to discussing the ways that people stopping AIs can help themselves to live well and support each other.

I hope this will mean that anyone who doesn’t understand why someone may have discontinued AIs will find another thread to comment on and will let us who have stopped AIs carry on our discussion between us.

Thank you and love to you all xx

[JoanneN]

Well said @jayesse big hug to you and I hope you’re feeling ok today . I’m having a good week despite the fact that I’m 60 next week - how did that happen ?

I do think that some of the people who don’t have side effects or very few really don’t believe us when we talk about the side effects we have and it makes me angry to be told we shouldn’t be discussing this as it would be awful if people who were really struggling had nowhere to turn .There’s anger and pain on both sides though and I don’t want to risk making someone else’s worse just because they have had a different experience to me and hold the opposite point of view . Xx

[jayesse]

Awwww. Happy 60th birthday for next week. I hope you’re going to do something lovely to celebrate.