Thanks @klf for your post.
I had two types of vaginal oestrogen while on Aromatase Inhibitors after seeing a menopause specialist. It has helped somewhat but it’s not perfect.
@jayesse I’m sorry you had to experience that. Most of my appointments have been a discussion with the doctors even with time short. I always went in with a list of questions and if the mentioned something I didn’t know about, I would call and speak to a nurse after I returned home. I still have follow up appointments and my team call me every 2 months, most of those calls are about side effects of Aromatase Inhibitors. The Dr on the menopause and cancer meeting I posted earlier has previously said many doctors prescribe them telling patients side effects disappear after 6 months. Dr Liz O’Riordan has said the same in her role as a breast surgeon but she is now asking all doctors to be more honest about side effects and the ability to have medication ‘holidays’. I was told everything would settle after 6 months, they didn’t but I was on Herceptin so was told to wait until that had finished and wait 2/3 months to see if anything changed. By that time I had taken them for a year. I really wish all doctors and cancer centres would provide the same service to their patients.
Take care 
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To use your words, yes it is scattergun, exactly that for tamoxifen and AI’s, because they are given automatically to everybody who has ever had a tumour that is HR positive, regardless of if it improves your risk by 1%, or 15%. No distinction is made.
Absolutely no mention of figures was ever discussed by the BCN who gave me them. It will be a standard govenment policy to give them to everyone regardless of their risk improvement, so that is what is done, its not individualised at all.
I discussed it with my oncologist, she confirmed my low risk on predict and even took into account that the protective effect that hormones have to lower cardiovascular disease. So, for people of very low risk benefit with tamoxifen, by taking tamoxifen there is an increased cardiovascular risk to consider. This is born out by predict, as the chances of dying from other causes is higher than the 1 % improvement obtained from tamoxifen in my case (about 4%) in 15 years. Other causes could contain cardiovascular or dementia (common age related diseases)- both of which tamoxifen indirectly effects negatively by reducing hormones which protect against them in premenopausal women (its different if taken after menopause).
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I had DCIS 10 yrs ago at 50yrs old had lumpectomy/radio and was put on Tamoxifen, absolutely horrid stuff for me, gave me anxiety, which I still have meds for and such a bad mood that my husband said I was realy nasty towards him, though I don’t remember this part. I told the doctor that I couldn’t go on with Tam and she agreed for me to stop, SE outweighed benifit and quality of life. (TNBC diagnosed Nov last yr, lumpectomy in Jan, done 3 EC, started Pac/Carbo last week, I dont regret my descision to stop Tam)
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Thank you for sharing your story on this thread.
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Thank you for sharing your story.
I do hope that you are doing okay on your new treatment.
Xx
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I was given a very precise breakdown by my surgeon following the pathology report which made it clear the AIs were a no brainer . Together with biphosphonates chemo and rads they increased my 10 year odds by 23 per cent . My cancer had not spread to nodes but was just over 2cm . Other people have different odds and circumstances. They were prescribed for 10 years not five I have four to go . My bone scans have been normal . I take prescribed Vitamin D as well . We are so lucky to have the NHS . The treatment in my experience was definitely not random . Maybe others are not so lucky
Everyone’s experience is different, you were well informed, maybe as you had more treatment. My experience was, “here’s a box of pills, start taking them now, don’t worry about side-effects as some people do fine on them”. No discussion about effectiveness, nothing about managing side-effects. Turns out that 1% wasn’t worth the horrible side-effects changing my life, when I can get far better odds with diet and exercise- exercise that I was not capable of doing as much of while on them.
It’s good you had minimal side-effects, that indeed makes it a no-brainer. Some people feel horrendous on them and feel they are debilitated by them, that’s when it becomes a balance, that is when people stop doing other things like attending to diet and exercise, thereby increasing their risks of mortality in other ways. Any benefit can be lost through poor diet and a sedentary lifestyle.
It can even come down to circumstances. Can you do your job while suffering the side-effects? Or are you retired already, and increased tiredness and brain fog is more manageable.
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Hello @Susanmanchester
If you were given all the information from the outset and are able to take the meds with minimal side effects and disruption to your life then you are indeed very fortunate. I’m happy that is your experience of them. However the inclusion of the word “maybe” when you say “maybe others are not so lucky” implies that you still doubt that some of us a) aren’t given all the relevant information they should have b) suffer terribly on these meds and c) are compelled, after consultation with their doctors, to give them up. With a rate of nearly 30% we are not just a rare few people - there are an awful lot of us who are “not so lucky” and have had to make, with the approval of our doctors, the difficult decision to stop.
I found @Frances55 comment “we’re braver to continue” really upsetting. There is no measure of bravery when it comes to dealing with a breast cancer diagnosis and treatment. We all have to face treatment and the fear of recurrence whatever course we take and however we decide to respond to it and live our lives. I applaud the people who press on with hormone therapy despite the side effects and show a strength of mind that should not be underestimated. But I don’t think it’s empathetic or fair for them to imply that those of us who cannot follow suit are less courageous. Before making such statements perhaps a little time spent trying to imagine how it feels to come out of a meeting with your oncologist having just agreed you are not suitable to take a drug that could be of benefit to you and might increase your lifespan would help you to understand how we feel. Believe me when I say it’s a very hard thing to hear and move forwards with.
Frances refers to having bad days and going “onwards with it, always onwards” as though that gives her some edge over those of us who can’t. I have to go onwards too - but “onwards without it”. Does that make me any less brave than her? No it does not and her implication that it does is insulting to a huge group of women like me.
We all have our fears and we all have to overcome difficulties on this horrible journey that none of us wanted to take.
I put my original post on here to ask for support after I had to stop taking AIs and felt lost and vulnerable. I would still like to get that support from people in the same position as me but sadly I feel that I can no longer get it from this thread as there are people who don’t want to empathise and are trying to make me feel bad about myself for the path I have been forced through no fault of my own to take.
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Sorry you’re offended. Anybody going through BC is brave, that’s all of us here. It’s brave to take and complete treatment whether that be chemo, radiotherapy, surgery, hormone blockers. It’s not a nice experience, a battle for us all really and I feel fortunate not to have had chemo, so I see myself as less brave than the women who have been through that. You too are brave to make such a difficult decision not to take medication prescribed by your Dr to keep your breast cancer at bay, and prevent a recurrence. I would be terrified to take your route, so yes, you are certainly braver than me in that regard. I just couldn’t take
the risk but I’m glad you’re comfortable with your decision and that you feel it’s the right decision for you.
Wishing you all the best.
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Thank you for that.
I would just like to reiterate, in reply to your comment “You too are brave to make such a difficult decision not to take medication prescribed by your Dr to keep your breast cancer at bay, and prevent a recurrence” that the decision to stop was taken with my doctor who despite having initially been the person to prescribe it then analysed, after seeing its affect on me, that it would be best if I didn’t. I was at no time going against her medical advice
I hope you are doing well.
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Hi @jayesse , just wanted to let you know that I am still here, as someone who had to stop Hormone therapy for medical reasons, and walking beside you.
Yesterday I had to see the gynaecologist to get results of what are now quartlery mris for the endometriosis, and ovarian cyst that formed from taking Letrozole. Because of my age (67 ) this is monitoring for ovarian cancer. I also have large fibroids so cannot take Tamoxifen.
I hold on to the hope that all my other support strategies will keep things at bay as I was told I am at high risk of recurrence. When I asked for a definition of high risk i was told that means 20% which is not as scary as I thought it might be.
Reducing stress is a big factor, together with a healthy diet and exercise. I also focus my time on volunteering which this weekend included organising and playing in a concert to raise funds for my local cancer support centre.
I see that the Menopause and Cancer podcast has lots of ideas for self support and wellness which look very useful, especially their current healthy 30 day challenge which is something positive to focus on. I am going to give it a go.
The gynaecologist also pointed me in the direction of nutritionfacts.org. He is an exponent of lifestyle medicine so I got lucky that I saw him yesterday and not the consultant!
Penny Brohn is another of my go to places online and this morning I did one of their recorded exercises classes on you tube. I also have some good books…The Cancer Survivors Companion and Radical Remission which are very inspiring and full of good ideas and tips.
Your forthcoming holiday sounds a great way to relax and de stress. I hope you have a wonderful time. Love Tulip x
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Hello @Tulip29
Thank you for your supportive reply.
I’ve been keeping busy and trying hard to look after myself. Food is a struggle for me - I am not overweight but I do like my food and too often i eat things I know I really shouldn’t. If my husband is away I find it easier to follow a healthier regime for a while but inevitably I slip back at some point. I hope my 2 weeks in Italy will do me good as I’m staying with ‘amici’ who being Italian all eat well. I just need to make sure I don’t indulge in too much ice cream!
Sending you a hug xx
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P.s. what instrument do you play? Are you a classical player or other music?
I’m hopefully doing a penny brohn retreat later in the year xx
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Hi @jayesse I play the baroque flute with my chamber ensemble
. We are four women, all with various health challenges but we dont let that define us!
Tonight I made a really quick healthy dinner from The Food for Life Cookbook which my friend loaned me yesterday.
Chop shallot or some onion and a garlic clove and sautee in a tablesponn of olive oil. Then all you do is add a tin of butter beans or other white beans ( including the liquid), 2 sliced sun dried tomatoes, some chopped artichokes from a jar, one cube of frozen spinach and the juice of a lemon. Then just heat through until the spinach melts. Ready in 10 mins! I served with some broccoli and topped it with a nut crumb. The recipe was enough for 3 portions so i will freeze the rest. To make the nut crumb - put equal amounts of almonds and hazelnuts on a baking tray. Add some thyme, rosemary sprigs and sea salt. Roast for 10 mins gas mark 4. Cool, chop ( or roughly grind) and sprinkle over the beans. Eat mindfully. Yum! Now off to cinema to see The Penguin Lessons. May treat myself to an ice cream! Life is for living! X
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PS i did a Penny Brohn retreat last Spring. It was absolutely brilliant! Highly recommended.
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I’m lucky to live near(ish) to Penny Brohn and highly recommend their services in person or online. I haven’t done a retreat but have done 2 wellbeing days. They offer so much support for those just diagnosed, in treatment and years afterwards. Will be doing Tai Chi with Kimberley online tomorrow.
For great food recipes, I have a lot of Pinch Of Nom cookery books which offer loads of tasty healthy recipes. They have some recipes online if anyone wants to try them out. I also try to follow the 30 different fruits, vegetables, seeds, spices and herbs a week.
@jayesse I hope you have a wonderful time in Italy. Gelato has no calories on holiday 
@Tulip29 I had to Google baroque flute as I have never heard of one, to that I’m musical at all. You ensemble sounds fantastic 🪈🎶
Personally I don’t think I’m brave, a fighter or a warrior, many terms some people choose to use with a cancer diagnosis, but they are not for me. I am just dealing with a breast cancer diagnosis and receiving treatment for it. Like everything in life, we are all individuals and some words and phrases may seem innocuous but others may take offence. This is why is so important we take care with our words or phrases so as not to offend others.
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That sounds delicious. I’m definitely going to try it. Thank you xx
Hi @jayesse
Just caught up with the thread . Sending a big hug and I hope you have a wonderful time in Italy. I have also eaten too much good food over the last few days and am now desperately trying to reform my eating habits that I can get into my wetsuit for when I start snorkelling next month . It would be a shame not to have at least one gelato in Italy though. Xx
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Can I come to Italy with you? Id definatly help you eat EVERY flavour of Gelleto 
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rescipie bookmarked I hope I can find it lol thank you Chef Tulip, made me hungry at 3 am insomnia,. do you think id wake the hubby with nut blending lol xx
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