Everyone should have a choice about their course of treatment, whether it is the right or wrong path no one actually knows. Unfortunately we do not have the technology to see the future or turn back time. My concern would be, that individuals have been well informed, researched and fully understand the pros and cons before making such a choice.
Statistics are a snapshot of what has happened to individuals with similar diagnosis, so that we can gauge the overall success or failure. Some find them helpful, others not.
Well being varies between individuals, some of whom really struggle with side effects, while others seem to have very little.
Personally as ER+ I am pro hormone treatment. I’m six months in and so far no major side effects. And the reason why I chose this route - “statistically” ER cancers are more likely to recur much later (ie 8+ years) which tends to coincide with hormone treatment ending. In my mind, I see a link there that hormone therapy does in the least delay recurrence. That made my mind up.
But if I develop other issues further along, then I will no doubt reassess - I am human, and pain or discomfort will influence my decisions.
I posted my original post in an attempt to reach out to other people who either can’t or won’t for whatever reason take AIs. I still maintain that we are as entitled to reach out for support in the same way as others do on all matters discussed on this forum. Indeed the BCN nurse who responded to the post in no way indicated that it was inappropriate or against any rules.
However, as it seems to be attracting negativity I will not be reading any more posts on here.
Can I suggest that anyone who wants to discuss living without AIs in a safe and supportive way sends me a private message so we can find another way to continue our conversation.
I’m so sorry you feel that you won’t be reading or posting on this thread any more.
You are entitled to post and be heard as much as anyone. And as you said the nurse/community manager didn’t feel that your post was in any way inappropriate. I do hope you do decide to keep on eye on this post as it will be important to many others.
Hi @jayesse , thank you for starting this thread. I’ve been out all day and have come back to see it has really taken off. You asked when I started/ stopped Letrozole. Started 11 Nov 23. Stopped 24 Oct 24. I was told it was in my treatment plan in very first meeting with oncologist. She wrote down 7 different treatments and then ticked six. At the time I had no idea what hormone therapy was… I was more horrified at the prospect of chemo. When the time for discussing hormone therapy eventually arrived after surgery and Herceptin I agreed to try it and see and said I would review my decision if side effects were unbearable or harmful. I was told that SEs were more likely in younger women, I was then 66yrs old. I had fibroids and knew there was a possibility that taking Letrozole would shrink them. This was a potential benefit. My SEs kicked in after 6 weeks but I carried on and got myself a referral to gynaecology so that the fibroids could be reviewed. The first scan revealed the biggest one had grown and a new one had formed. The conclusion was that the AI had been stimulating my pituitary gland to produce FSH thereby increasing oestrogen to my reproductive organs. In effect my body was responding to the oestrogen deprivation by finding another way to make it. I was considering switching to anastrazole when my next scan revealed the endometriosis and ovarian cyst. Only then did I decide to stop the AI. I havent ruled out ever resuming hormone therapy if the benefit should outweigh the risk but this is not the case in my particular situation at present. This wasnt the only treatment decision I had made - I refused Paclitaxol, elected for mastectomy to avoid radiotherapy, and stopped Herceptin after 9 injections, but stopping the AI was definately the hardest decision of them all. Love Tulip x
We’re on the same page Mun4o. Nobody said it was ever going to easy did they.
Personally I often think how fortunate I am not to have had to have chemotherapy. I can’t imagine how tough that may be. So, if I have a bit of joint pain and insomnia with Letrozole, I will plough on because it helps stop recurrence. [removed by moderators] It’s black and white really in my mind. Sorry if it offends but those are my views about it.
I agree it’s not appropriate to have some sort of thread on here in support of people who opt out of taking their oncologists advice. People are free to do as they please but I would have thought that was a step too far on this forum.
Thank you for getting back to me. I’m sorry to read that you have had such a hard time. Another example of why stopping AIs is not a “luxury” choice made by some people but an absolute necessity for many.
I wish all the very best for you.
Hi @naughty_boob , quite a few of the Penny Brohn Strength and Stamina classes are recorded so can be accessed via the internet at a time to suit. They can be found at PBUK Movement. I often do a recorded class at a time to suit. I did the 2 day wellbeing course there last Spring and learnt so much from both the sessions and from other participants. I was introduced to yoga nidra which i access by the Insight Timer app to help me relax and get off to sleep. The cooking demo was also brilliant. Ive always cooked from scratch but Penny Brohn was transformational. Before cancer my idea of a salad was lettuce, cucumber and tomato. Now I make a salad with kale, red cabbage, red onion, radishes, apple, beetroot, seaweed ganules, pumpkin seeds, sesame seeds, dressed with olive oil, mustard, and apple cider vinegar, and topped with saurcraut or kimchi. I think the whole Penny Brohn approach with the different pillars of support idea is terrific. Sadly the concept of integrative oncology in the UK is a rarity when it would benefit so many people. What would be good is if all the many hundreds of different cancer charities could band together under an umbrella organisation to strengthen their powers as a lobby group. Love Tulip x
@Frances55 I had chemotherapy with a year of Herceptin as well as radiotherapy then Letrozole. Chemotherapy was much harder than a Letrozole but it’s doesn’t make the side effects easier to deal with for 5 years. Chemo was a few months.
I’m not sure the words ‘wimp out’ are appropriate as it could imply someone else is wimping out even though you are referring to yourself. We have to be careful how we word things so as not to upset others.
Again this thread is appropriate as the forum is for all users. There is nothing here telling others to stop their treatment it was about someone asking if others have stopped and that they could share their experiences and support each others.
@Tulip29 Penny Brohn is fantastic with their integrative approach and in no way promote ‘natural’ over traditional medicine. I did their treatment support programme while going through chemo with Doctors, exercise, wellbeing and nutritional experts all to hand. It was a whole person approach. Something the NHS could do but don’t have the time or money to promote.
If we all eat better, exercise more and improve out mental health we would all be so much better off with our treatment and into the future.
I love Kim the nutrition lead, she offers so many different ways to improve your nutritional intact. I like you have always cooked from scratch but have now added more fruits and vegetables to my dishes.
I must look at PBUK Movement on YouTube, I keep forgetting.
Will be doing Tai Chi and Sound Sanctuary tomorrow with PB.
The person who implies that stopping a drug due to side effects is “wimping out” (Frances’ expression) is very lucky that their side effects from letrazole are manageable for them. For others the side effects are much worse.
As I have said before, I felt suicidal whilst on them. I am glad I made the decision to “wimp out” (as Frances expressed it) and not “plough on” (as Frances expressed it) as I may not be here today if I hadn’t.
As you very rightly point out - nobody has said anything about wilfully going against their oncologists advice. In fact, the word “advice” by definition means it is a recommendation and not an obligation. This is the same with any advice we receive in life - we have the right to take it or leave it and our decisions are our own. We do not, fortunately, live in a police state. And doing what is best for us, in our own personal circumstances that nobody else can know, is our right. It certainly isn’t fair to imply that by doing so we are dishonouring others who are in a more difficult situation than our own. Everyone’s situation is unique and everyone’s responses to their situation are different. In fact, if you read a lot of the posts on here there are many questioning treatment/unsure about advice given by doctors/saying they have refused a treatment of a particular kind. That is what open discussion is all about.
Thank you for your support.
I’m sorry if you find this thread to be offensive or think that it shouldn’t be here . The fact as far as I understand it is that approximately 30% do stop taking their hormone therapy before the allotted finish time - that’s quite a lot of people so do we not deserve to have a voice on here ? And where do you stop when you say that we shouldn’t talk about it - there are very many posts about the side effects and I’m quite sure that those put people off taking it so should we stop talking about those as well ?
There are many reasons for people stopping it ; as I’ve said previously in many threads many times my Surgeon felt that if I didn’t get on with hormone therapy then he felt it would be reasonable for me to stop it - and I gave it a good go. If I was younger / had a different kind of cancer / higher risk then things might be different . I also think there needs to be better support for people during the first year of therapy .
Ok so perhaps it might prevent me getting a recurrence or delay it - however I have other health conditions which I’m concerned may be worsened by it and in truth I’m probably more afraid of them. My choice was mine alone - that’s something I have always stressed and have given other people who are struggling information about what to do if they’re struggling . For instance I know a few people who didn’t tolerate Letrozole but are now managing ok on Exemestane .
I don’t want to die but I’ve had to put my own life on hold for over 5 years now to deal with family problems and I’m not prepared to continue doing that for another 5 years to take a drug which may or may not help - and there’s no saying that I wouldn’t be left with lasting problems from taking AI . At least after 5 months on it when I stopped my side effects did go.
I don’t know if I will live more than another 5 years and the truth is that none of us do .I’m not being naive I’m a Nurse and I’ve seen a lot of pretty awful things and several work colleagues have died of breast cancer as well as friends and relatives who have died of other cancers but cancer isn’t the only scary thing out there .
@mun4o I’m terribly sorry for what you are going though now .
On reflection I agree that my comment about ‘wimping out’ was flippant and I apologise if it caused any offence.
Ultimately I was making the point that it does help to persevere with hormone therapy because symptoms do ease after time. I’m three years in and I do tolerable it quite well now. It wasn’t always that way and, like many others, I suffered quite a bit with it in the early months. I think it’s important to reiterate that many people do tolerate hormone therapy well and as I said, we don’t hear about that so much.
@naughty_boob I am absolutely shocked that a community champion can have such attitude… If you go back to my original post I’ve already used capital letters I’ve been on this forum since 2022 and not once have I offended anyone…The fact that you can say that my comments are overtaking this tread is beyond believe… [edited due to community guidelines]
I certainly don’t feel that I have taken the easy path by refusing the hormone therapy. But I understand why you want to continue with it. I’m glad it’s ok for you.
I had chemotherapy which made me so ill I ended up in hospital twice. I have ended up with IBS from the chemo and Phesgo (which I am still taking). I’ve been told this may never get better now. I’ve got terrible tinnitus (apparently from carboplatin according to my oncologist), my eyesight has got worse and I have several loose teeth from the chemo making a pre existing gum condition much worse. Now I am having heart investigations for a condition they think is chemo related. Not to mention my mental state when I tried letrazole. I think I’ve been pretty stoic and have earned my right to decide what’s best for me now.
I hope you get through to the end of the letrazole managing it well.
@Frances55 why should you apologise? Am I the only one here who thinks that everyone has the right to express their opinions and feel safe in doing so. Everyone has been through so much and I am not sure why there is the need to make people feel like they did something wrong…
I caught a snippet of your deleted post before it disappeared. You have had huge challenges to overcome, probably more testing than many on this forum. The fact that you are still marching on is a great achievement and it demonstrates how strong you have become, getting past each hurdle while dealing with this awful disease.
You know your body and your mind, and you know from experience what works or not works for you.
Best wishes going forward, and I hope things start to get a bit easier x
I’m sorry Frances I know that for many people side effects do settle down after the first year , I know people who haven’t had side effects but I also know people for whom the side effects have not settled down . I’m not sure why my team told me they would settle down after 3 months and then another BCN said 6 months - it made them sound a bit disingenuous .
Your comment about wimping out did offend me - you don’t know me but I know myself and I’m far from perfect but not a wimp .
I’ve been on this forum since 2022 and not once have I offended anyone…The fact that you can say that my comments are overtaking this tread is beyond believe… [edited due to community guidelines]