Sounds like you are doing amazingly well.
You mentioned fear of recurrence. I think Breast Cancer Now can offer help with that through Someone Like Me. One of their nurses has suggested that to me and I’ve filled in the form to request a call. Also their Moving Forward course is said to be brilliant too.
Big hug x
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How are you doing on the new medication?
Two cancers at once is a huge thing to contend with. I hope you are getting all the support you need.
Out of interest, what did your oncologist say about the predict score? Some seem to be more steered by it than others. The first oncologist I had (who was not nice) was heavily into it, whereas the one I have now has always stressed that it’s based on lots of stats but is still only a prediction and isn’t set in stone and that we are all unique. As mentioned before, whatever predict says based on our stats, it is only a possibility that we will get a recurrence either with or without AIs.
My oncologist was being cautious when we spoke in front of my nurse. When she phoned me late one afternoon from her office a few days later she was much more open about being in favour of taking a more holistic approach and using supporting therapies to stay well. She also acknowledged her frustrations at not being able to talk to her patients at length due to having only 20 minutes for each one.
Sending you a hug x
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Ps. Do you live in Somerset?
No I’m just across the Severn bridge in Wales.
My team were hesitant at first to talk about the Predict score wanting to get on with treatment. My menopause specialist wrote to them to ask for my scores so we could discuss ongoing benefit and side effects. I have talked to my team and they said it is just a prediction, my biggest percentage was surgery, the AI’s are 5%. Which in the normal world seems quite small but in the cancer world is ‘bigger’, had I had a 1% or 2% then I might think again.
I am a week into Exemestane, which is not first line of treatment in Wales, it’s Letrozole. Which after talking to the menopause specialist (gynaecologist) says it’s cheaper than Exemestane so that’s why you’re put it first. I still feel good on the Exemestane and hope it continues. A lady I met at Penny Brohn managed 6 months on Letrozole and swapped to Exemestane and like me her symptoms reduced. They didn’t disappear but they were more manageable.
Are you in Somerset?
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Yes I’m in summerset by the Bristol channel on the opposite side to Roose airport. I went to uni in Cardiff (many moons ago) and I loved it there. X
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Lovely part of the world. Been to Porthkerry park a number of times between Rhoose and Barry and walked along the very rocky beach with the planes flying over head looking towards Somerset coastline.
Not so long ago we were sitting outside the cafe with the dog and had to take a call from the doctor about MRI results on my neck. Luckily it was just getting older!
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Hi there,
The thing about stopping hormone therapy is tricky. The trouble is, in forums, (which can of course be a wonderful support and source of valuable information), nevertheless, more often than not you read about people’s negative experiences rather than positive ones.
Some people don’t tolerate AI’s well and like most cancer treatments there are some side affects. Yes, some peoples PREDICT score may suggest that the benefit of taking these drugs is very low, but nevertheless there is still benefit, otherwise oncologists wouldn’t suggest we take them.
I would urge anyone to persevere with hormone treatment if they can. I know I found that the worst symptoms tended to settle down in the first year and many people tolerate one brand better than others. Nobody seems to know why this is but I know from personal experience some brands were debilitating but I felt fine on others. It’s tough but if you can keep going then I feel sticking with it may always be worthwhile.
Recurrence is a scary prospect.
All the best.
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I’m glad you can tolerate them but not everyone can and of course everyone needs to take into account their pre-existing medical conditions and the impact that the AIs may have on these. In my case, having tried them for 6 weeks and seeing the very negative effect on me, I simply wasn’t going to risk another type or brand as the whole merry go round of taking meds, getting side effects, taking another med to counteract the side effects, getting new side effects from the med that was given to counteract previous side effects etc etc just was too awful a prospect to consider. I would rather live better even if it means living shorter. It’s a personal decision we all have to make.
The possibility of recurrence is there whatever we decide re hormone blockers - medical professionals will try and influence you into taking them but only emphasise the possible benefits and play down/deny the probable side effects and keep as quiet as possible about the fact that they don’t guarantee non recurrence and sadly many people on them get recurrence too.
I hope you continue to stay well on them.
X
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Yes I did do a Moving Forwards course which helped me get my head back together after treatment . I keep meaning to look into Penny Brown as gave heard so many good things about them xx
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Hi @Frances55, thank you for your post. I can’t agree more with you!!!
I will definitely be grilled by a lot of people here on this thread but and there is big but coming…I am hoping that my post won’t offend anyone as this is the least thing I want to do…
If you want to have a support group for people not taking hormone blockers do you think that this is the right forum for it??
Here people are getting support for going through different stages of gruelling treatments and I for once don’t want to see them being perceived as not going the natural way and not following what their bodies are telling them to do but what a medical professionals with, let me think, don’t know how many years of studying and training who only want to do one thing - save your lives people…that’s the main job of the oncologist. It’s not to think about the side effects of this or that but to SAVE YOUR LIFE!!!
You can check all of my posts about struggling with Letrozole, yeah, I’ve been calling it the dreaded Letrozole but guess what I am still taking it and will be taking it for the foreseeable future (that’s another 5 years) as I don’t have the luxury of stopping it so yeah think about how many other people can’t really go and stop their meds!
Wishing all the best to everyone 
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Hi @jayesse genuine question, you say that many people who take endocrine therapy end up with recurrence or spread. Do you have actual statistics or primary source reference on that? I’m a stats junkie so would like to add that to the list. Thanks.
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I think that people who have decided or can’t tolerate letrazole/AIs have an equal right to support each other on here as those who can/do take it. There are plenty of other chats and threads where people have asked for support for not accepting other areas of treatment, so why not this one? Have you told those people they shouldn’t be posting on here too if you have, for example, had Kadcyla but they didn’t want to (lots of posts on that one)?
Sure it may not sit comfortably with everyone but then not all the topics and threads can sit well with everybody but that doesn’t negate the value of it for the people who need it.
Nobody is saying that if you are able to take letrazole and want to take it that you shouldn’t do so, and certainly nobody is suggesting you should try and do without it if that is the case. It’s certainly not a “luxury” to decide or have to stop it. It’s a personal choice based on ability to take it or personal philosophy re taking it. I was suicidal in just the six weeks I was on it so I find the negativity and implication that I am being self indulgent by having the “luxury” of not taking it very upsetting .
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No I don’t I’m afraid. I also don’t have stats re recurrence in people who take them. BUT as it was a Macmillan nurse I spoke to about my decision not to take AIs who reminded me that recurrence can happen both with and without them I am confident there is truth in my statement.
If you can find some stats I’d be really happy to hear from you.
X
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@mun4o I think there is a need if people want to talk about it. This forum is for everyone. I’ve read many posts that seem negative but it is just people trying to get help and support. Less people comment on things going right as they are getting on with their lives and that’s great but it would be nice to hear some positive stories. When I have seen a positive story I have thanked them for posting.
I definitely don’t think this thread is about just being ‘natural ‘ and not following doctor’s advice. Many people can not tolerate hormone therapy and want to discuss it with others in the same situation.
I have found out so much on this forum and try to then help others in turn.
I have a post about Letrozole and it’s side effects that I keep updating. I tried it for a year but after having a break I have now swapped to Exemestane. My post has had thousands of views and many are also struggling with Letrozole. I noticed you have also posted on this thread.
I personally know a lady who had low grade breast cancer with surgery and radiotherapy and she stopped taking Letrozole after 3 months. She talked to her doctor’s and said her quality of life was more important than the percentages on the predict score. Her side effects for her were unbearable.
As with everything on this cancer journey we all come from different places and react differently to medications. We all have to do what is right for ourselves.
I think it is a little unfair to say some people have the ‘luxury’ of stopping Letrozole. If my side effects were unbearable and other drugs or brands do not work, then I would probably consider stopping AI’s even with two primary cancers. We all have a right to our opinions but not to judge others.
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There are posts on the forum from some people who have had recurrence either whilst taking them or soon after stopping but not many. I’m not sure that anyone has empirically provable statistics though although I’m always keen to research them.
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My oncology team said the same to me about recurrence when I have discussed AI’s. Taking them is no guarantee you won’t get a recurrence. Research has shown they can help. But as Dr Liz O’Riordan has quoted many times ER+ cancer cells are sneaky and they can lie dormant for years and then start to grow. She had two recurrences on hormone therapy.
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Thank you for that post and for supporting the right to post on here and to ask for support whatever our individual paths are.
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@jayesse quite the opposite I didn’t want to upset anybody and made it clear in my post.
You don’t know me or my situation and I don’t know you but I did also find this thread very upsetting and even asked the BCN moderator about it?! I’ve also noted that you don’t have any stats about recurrence when on AI so this is very scary to me when people are making statements like that…
I’ve got a friend who is battling secondary breast cancer and she doesn’t have a lot of treatment options left so I did find it very, very upsetting to see this thread with those messages when someone so close to me who is fighting for her life has no options left 
We need to communicate mindfully and be very careful in the way we are expressing our feelings especially on forum like that.
Wishing you all the best.
@naughty_boob I knew that I am going to get the slack for my post but I still stand at what I said!
It’s something I take very personally in a way no-one can understand. There is no other person who knows what I am going through and yet, I am being judge for being myself and honest in expressing my view. I think people forget that there is freedom of speech and as people rightly are saying where is the medical evidence behind all of those posts. I am a scientist first and foremost and rely on scientific data and so far noone here actually posted anything that has shown the opposite…
I’ve been on Letrozole since February 2022 and am well aware about the side effects. Everyone is aware about the side effects of AI but when your cancer had spread to the lymph nodes and you’ve got two young children at home you don’t have the LUXURY to stop it. That’s my truth and I think is rather sad that people on this forum can think is okay to attack me for saying my truth.
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@mun4o I simply pointed out that some of your post was judgemental. I suggest you re read your original post. Using capital letters is deemed as shouting by many. Then you came back to @jayesse and say about being careful with your words.
I also have a friend who has secondary breast cancer now progressed to the brain who is very limited in their treatment options but that doesn’t negate others making their own choices. I don’t think it is fair that your comments are now taking over this thread.
The BCN moderators will have decided this thread complies with BCN guidelines, if I thought it didn’t I would report direct to them. Everyone has a right to speak about their own personal experiences and feelings but not judge others for their views.
Can we just leave it there?
Maybe it would be helpful for you to chat with the BCN nurses about all that you are going through. 0808 800 6000 9-1 Saturday and 9-4 Monday to Friday.
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