So this definitely much more what I would have hoped for from a thread like this so I decided to eat my words and contribute again . You’ve done a good thing starting this off .xx
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Hello @JoanneN
Nice to see you back here. Yes it seems like the thread is now being contributed to very positively.
Hope you are doing well. Xx
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Hi everyone
Our nursing team and the forum moderation team realise this topic is one that many people feel strongly about. We understand that when someone feels strongly about a point of view and puts thoughts down into writing, those words typed online can take on a different meaning – or appear harsher – than when said in person. This is why some posts were edited.
Having any treatment for breast cancer is a personal choice and opinions will differ. This forum has been a source of information and support for thousands of people over the years. We need everyone’s help to allow it to continue being an informal, safe and non-judgemental space led by forum users.
You can find more information on how and why the forum is moderated in our guidelines.
Please also remember this is a space to share experiences and thoughts, not to give medical advice. The nursing team are available to explore individual decision making based on what is right for each person, rather than advise on treatment decisions, and encourage anyone to discuss the benefit of treatment against the risks and side effects they are experiencing or concerned about with their treatment team.
You can contact the nurses by calling our helpline, posting in the Ask Our Nurses section of the forum or completing a web submission form.
Best wishes,
The Nursing team and Forum moderation team
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That’s really helpful to know @JoanneN . Due to severe joint pain, I stopped Anastrozole after 8 months (after also having been on Letrozole for 8 months) in January & am now on Exemestane but my knees are still very inflamed & painful. You’ve given me hope that they might improve given more time 
.
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I had a small accident and broke my big toe . It’s somewhat annoying and restrictive but not really painful so long as I’m careful . It will take about 4 weeks to heal they think. They were sending my XRays to Fracture Clinic and said it was unlikely I would need further treatment apart from the shoe they have given me so I’m keeping my fingers crossed that that is the case. Xx
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Hello @jayesse, I am a little late to this chat! If you have set up a separate group and if people who have been prescribed but opted not to take hormone therapy are welcome, please add me! Thank you.
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Oh no @JoanneN! I hope your toe is on the mend. Have you got it strapped up? Xx
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Hi everyone, Just wanted to share some more healthy eating ideas in response to @Tigress who asked for treats! As weather set fair how about ice cream…ingredients 4 peeled bananas, 4 tablespoons almond nut butter (other nut butters can be substituted), 4 teaspoons maple syrup. Method. Seal the peeled bananas in a plastic bag and leave in the freezer for at least 8 hours until completely frozen. Chop the bananas into chunky pieces (dont worry they remain soft when frozen). Put them in a food processor or liqiudiser with the almond butter and maple syrup and whizz until smooth. Add a tablespoon or two of cold water to get the mixture moving if necessary. Scoop into bowls and eat straight away or store in a freezer container for later.
Something else in the treat line that I made this week is chocolate, beetroot and avocado brownies. I found the recipe on the Penny Brohn website.
I also recommend the charity Heart UK - the cholesterol charity. Which has lots of healthy recipes on their website.
Love Tulip x
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Hello @minib
I didn’t set up a private chat in the end as I thought it would make it harder for people to access support from others. So we are continuing our conversation on this thread. Lots of wonderful people on here sharing their stories and helping each other. Lots of tips about staying well. Please join us if you would like. Xx
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Thank you so much @Tulip29
Sounds delicious!!!
Xxx
Thanks @jayesse . It is a relief to find this group. I am slightly different because I have decided not to take the letrozole I was prescribed at all. I may change my mind down the line but have discussed it with my family and GP, done a lot of research and feel this is the right decision for me.
I find the attitude of people who don’t agree with this decision quite difficult. I have noticed that fear operates for those that do / don’t take it: fear of cancer coming back vs fear of side effects but there are many other reasons people decide to take AIs or not. Cancer isn’t the only thing going on in our lives.
Very grateful to hear others’ stories and share info and advice.
Thanks for starting the thread!
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@minib . It’s your body and your choice alone. I am sure you will have discussed it with your treatment team, gp and family and come to the decision that is right for you. I’ve found everyone I’ve told in my family and friends circle to be incredibly supportive of my decision to stop after 6 weeks because of how it affected me. Just a bit of misunderstanding on here but it is a very emotive subject. And yes, it’s very individual and everyone has a different take on it but what matters is that you are happy and at peace with your decision.
I think we all feel residual fear as we get past the active treatment stages but for me that would’ve been the same with or without hormone blockers. I’m hoping to do a ‘moving forward’ day once I’ve finished Phesgo to help ease that.
If you find anything that helps you please let us all know!
Xx
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My bit for staying well after BC today was flogging myself at the gym again. Then when I went to my local tesco express for crisps - a vice - I did actually look at the ingredients and went for the seasalt ones that had potatoes, oil and seasalt as only ingredients- its my nod to generally avoiding processed food. I cook most things from scratch, eat lots of veg etc. Not about to give up crisps ( as that’s dull) but may as well be helthier with their seasoning. Would of gone for cheese flavour, but they come with lots of additives, so smeared some gorgeous gooey french brie I had over some of them, lol its a work around.
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Thank you. We are all managing such a challenging experience. The last 6 months since I was first referred have been exhausting - am sure it’s the same for us all. We need to support one another as much as we can.
Things I have found helpful: I have used the app YUKA to identify some things I have used or eaten that I now avoid (potential endocrine disruptors or carcinogenic); am trying to drink green tea and include red grape, mushrooms (white, chestnut, portobello) and raw honey in my diet regularly. My diet is generally good anyway but am making more effort to eat more organic foods or wash off pesticides (with bicarb or white vinegar). Keeping up exercise etc. Less alcohol (doesn’t mix well with treatment anyway!). But everything in moderation! Life is for living!
I have read a lot of research (my job involves research) and I prefer to understand everything as much as I can but totally understand that isn’t everyone’s approach! And of course I listen carefully to my med team 
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Crisps are my downfall!
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@jayesse thank you for this thread and no idea why others are having a go at you when you’d asked for support.
I’ll probably throw oil on the flames here I’m afraid but not only did I refuse Tamoxifen I’m continuing with my HRT.
I don’t need to try AIs or Tamoxifen to know how I’ll react to not having oestrogen because I only survived a week without HRT before I had to go back on it due to severe symptoms.
The advice in most podcasts I’ve listened to have all had one key message and that’s to advocate for yourself and get your actual figures on not only survival via the Predict tool (V3) but to get your percentage chance of recurrence for your particular circumstances as they will be different for all of us.
Mine was 3-4% before radiotherapy and radiotherapy would reduce it to 1-2% so even if Tamoxifen reduced it by 50% that would still only be a tiny percentage which is not enough for me to suffer it.
My friend just said oh I was told to take these tablets and didn’t even ask and maybe some people don’t want to know which may be their way of dealing with it which is fine if you don’t get the menopausal side effects but if they’re debilitating then it can definitely help inform your decisions.
I don’t know if you’re menopausal @jayesse but there’s quite a good FB group called menopause and cancer chat hub that’s a lot more open minded.
Dr Tina Peers and Professor Dame Lesley Regan on YouTube also worth checking out and Dr Louise Newson podcast 179. HTH.
Happy for you to DM me or join the other chat you want set up x
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Thanks! That is very encouraging!
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Hello
I’m post menopausal so lucky I didn’t need to have an induced menopause!
Like you said, we all have the right to make our own choices and advocate for ourselves. Part of the reason I didn’t want to continue on hormone blockers, as well as the health issues, was that I have found the interaction with my hospital team so frustrating - so for me stopping hormone blockers has brought the added bonus of reducing the times I have to go there and I can feel like I am starting to take back control. I know not everyone feels like this - it’s a very personal thing - but for me it’s a tremendous relief because I don’t like being in a system where I feel I am only fed information piecemeal, my concerns are not listened to, side effects are denied as being part of treatment and there is no consideration for overall wellbeing and mental health. Most of my team are wonderful lovely caring people but they are stuck within the confines of the system too. Not having hormone blockers at least means less exposure to all of that.
I haven’t started a private chat as I wanted to keep the discussion open to all.
Wishing you all the very best xx
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I want to stay on my HRT not just for my symptoms but also for the long term health benefits such as reducing my risk of dementia, osteoporosis, heart disease, colon cancer and diabetes.
As BC survivors we’re still more likely to die of heart disease or dementia than we are of BC.
I do understand that the oncologists want to do everything to reduce our risk of recurrence but for me the cost is too high. It’s going to be different for everyone but I’d rather have 5 good years in my 50s than 5 miserable ones
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