Sorry to hear of your loss @naughty_boob . Sending love . Xx
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Thank you xx
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Hello @JoanneN
Are you 60 yet?! Xx
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No 
it’s on Thursday xx
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Happy birthday for Thursday 
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Happy Birthday @JoanneN
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Thank you so much @naughty_boob 
. I hope you are having a good week too. It was a slightly frustrating day initially but it’s definitely got better . I’ve been celebrating since Saturday anyway and I’m carrying on til next week so there have been a couple of really high points . On Saturday I was dancing to live music that I used to dance to in clubs when I was 17 / 18 - fantastic but also what a privilege to still be here and able to dance 40 odd years later and at a live performance as well. Xx
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I support your views completely and I’m so sorry you have been bullied like this when your views are valid and important, especially for others reading them who may be at the start of their AI journey. I too tolerate them really well, as do many others. They are just part of our treatment plan and we just get on with taking them. That’s not to say we don’t have bad days when we have to drag ourselves out of bed, but onwards with it, always onwards.
It may be a simplistic view to some but a DOCTOR told me to take them to reduce my risk of recurrence, so I do, every day. Maybe they won’t work and my breast cancer will come back. Who knows, but at least my children would know that I fought it for them and took my treatment, as I’m sure you’re late sister would now want you to do after her experience. We’re braver to continue. Just because we don’t have dreadful side affects doesn’t mean we haven’t suffered. Sending you a hug. x
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Thank you x
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I don’t think one is right and one is wrong as there are too many shades of grey and we’re all unique. As one friend said to me all we can do is make the best decision with the information we have at the time.
Some people are happy just to take AIs if they’re told that’s what the doctor thinks they should do regardless whereas some like me want to know all the stats an be the pros and cons of everything.
My risk of recurrence is only 1-2% which is less than the average woman’s risk of even getting BC in the first place (14%).
My percentage benefit of taking Tamoxifen was 0.5% of 1-2%!!! I mean seriously? They wanted me to risk my health for half a percent of 2?? So basically 0.01% benefit 
So glad I’d asked the question. They do just like to dish them out like sweeties without taking care to understand the implications for the individual. Another friend of mine struggling horribly on them and never thought to ask until I mentioned it to her.
I think it’s partly our upbringing where we were told that doctor knows best and not to question but it’s no longer like this and the NHS now does shared decision making with the patient so it’s not as disempowering.
At the end of the day it’s personal choice. There isn’t a right and wrong.
Sorry you’ve been bullied as this is an important topic to discuss x
Condolences and happy birthday to those who it applies to. Sorry, I’ve written a long post and can’t look back at individual names
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I’m sorry, “dish them out like sweeties”, what an irresponsible comment. I was fully informed about the pros and cons of taking AI’s and my PREDICT score was fully explained. My risk of recurrence was also only 2% over 10 years. The fact remains they are the go to treatment for ER+ BC and they can be enormously helpful in preventing recurrence, proven by years of medical research. There is risk with all medication.
If you don’t want to take your consultants advice the risk is very much on you. If you’re happy with your decision, fine. Personally I have always advocated for myself, asked questions, and I’m pretty sure most people on here do the same. To suggest that people who take their AI’s blindly without weighing everything up is disrespectful. It’s got nothing to do with your upbringing. It’s quite simple really ……. we’re not medically trained. I wouldn’t take medical advice off you any more than you would from me. When I felt vulnerable and was diagnosed with breast cancer I put my trust in my Drs and nurses and took their advice. I would advise anyone else to do the same.
I wonder if your friend stopped taking her AI’s after your advice, after valiantly pressing on taking them despite her debilitating symptoms? I wonder if your advice planted a dangerous seed of doubt in her mind?
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She hasn’t stopped taking them yet but she is certainly going to ask about her percentages. She didn’t even know what the tablets were and didn’t ask just that she "had to take them for 5 years’ - no discussion nothing. There nothing dangerous about baking and informed decision.
Sadly I see it time and again on the BC group on FB that people just aren’t informed at all, so it’s not disrespectful just what has happened to a lot of people sadly. One person discovered that she had a zero benefit from them, so sad after some irreversible damage had been done.
My sweeties comment is more about the fact that they give them to everyone regardless of their situation and I hear that often that they don’t give them all the facts and figures. I’m glad you had them to be able to make your decision, but it’s all too often not the case.
As I say no right or wrong, I just feel strongly that people should know risks and benefits for them and this is often not the case
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Hi. I changed from Letrazole to Examestane and my symptoms reduced and became more tolerable, however I also found my hair is coming out quite a bit and worried I’ll have none left long before I finish the course. Just don’t know what to do anymore 
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My hair was becoming very thin and brittle whilst in Anastrozole . I have heard that Penny Brohn charity ( check their website ) has advice for things like this and might be worth checking out. You could also speak to your surgery and see if they can suggest anything xx
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Just wanted to share my experience. I stopped hormone therapy after 2/3 years with the full support of my treatment team. When initially discussing hormone treatment with my surgeon she brought up the predict website. This indicated that over a period of 15 years hormone therapy would give me a 1.4% benefit. She pointed out however that this was for distant mets not purely recurrence. She then added quite nonchalantly that if it did recur it’s normally the same type & grade (idc grade 1) and they would just ‘whip it out again’
I struggled on anastrazole for 6 months. The pain in my knees (despite miles of walking), I could cope with, the insomnia I couldn’t. I then had a review with my oncologist at a different hospital who immediately switched me to tamoxifen. She said that if I had any problems with tamoxifen she was happy for me not to take anything, that quality of life was much more important than the ‘marginal’ benefit hormone blockers would give me. I persevered for 2/3 years before taking her advice understanding that the majority of the benefit from these blockers is from the first two years of taking. Still it wasn’t an easy decision!
I’m posting this because I want to stress that each case is different and obviously the hormone blockers are of more benefit to some than others. Susan, please accept my sincere sympathies for the loss of your sister, I can understand why this subject is very emotive for you. From what I’ve read however your sister must have been somewhat high risk to be offered chemotherapy. In her case both the chemo and the blockers could have offered huge benefit, but you must also realise that even if she’d taken all the treatments offered she may have still been one of the unlucky ones.
As others have said each case is unique and the hormone blockers affect each of us uniquely. Whilst I would be the first to encourage everybody to try the drugs and ride out the first few months I also believe that we should support those that struggle. Not taking the drugs is NOT an easy decision. On a final note I’d like to mention my aunt. She suffered from breast cancer 17 years ago and did 7/10 years on AI medication. She’s now in her early seventies and although I believe she is still cancer free she is so riddled with arthritis that she can no longer walk. Maybe the drugs, maybe not!!
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I wonder if the impact as is alleged is so low of Tamoxifen and AIs why mortality from
Breast cancer has plummeted in the past 50
years . It’s not about recurrence which can be sorted but the possibility of incurable metastasis which as everyone knows can happen decades down the line and it’s my understanding that is what hormone blockers are for . You can’t’whip
Out’ anything once breast cancer has spread its systemic . Without radio chemo and hormone blockers my 10 year survival prospects according to Predict were 60
per cent . With all the extras 83 per cent . I’m now six years down the line and have taken Letrozole all that time . I don’t have any arthritis at all so I guess I am pretty lucky . My hair is slightly thinner but I am 67 so that’s as much aging as anything else . If the MDT advice from one of the world’s most famous cancer hospitals was to take AIs for 10 years I reckoned they were not saying that for a laugh . Of course the death of my sister three years after her primary could have been nothing at all to do with giving up on the Tamoxifen and not having chemo . Statistically that’s not very likely . Breast cancer treatment has moved on exponentially in the last 25 years and is tailored to individual needs. It isn’t random or scattergun . If women want to take their chances fine but personally I would rather cut the odds of the Russian roulette we are all forced to live with ending with a terminal
illness
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Susan, you do not appear to have fully read my post! Obviously when my surgeon referred to ‘whipping it out’ she was referring to a recurrence in the breast, not distant recurrence!
The whole point of my original post was to emphasise that each case is unique. Yes your survival at 10 years may have been 60% without treatment but mine is 99%. The AI’s will be of much more benefit to you than they are to me. I don’t feel I’m playing ‘Russian roulette’, I’ve made an educated decision after long discussions with both my breast surgeon and oncologist.
Yes breast cancer survival has improved significantly in the last 50 years and yes that is down to hormone treatment in part. Do bear in mind though that that improvement is also due to nationwide screening being introduced, improved radiotherapy and surgery techniques, plus the discovery that her2 positive cancers had a worst prognosis and resultant development of herceptin.
The whole point of my post is that each case is different. If AI’s offered me a 23% improvement in prognosis over 10 years then yes I would have persevered longer. What I wouldn’t do is tell other women that they are playing Russian roulette with their lives when indeed they may be only getting a 1 or 2% benefit!
My aunt never previously suffered from arthritis. It was after coming off the drugs it flared up, maybe related, maybe not.
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@julesd63 I have noticed my hair being very dry and frizzy on both Letrozole and Exemestane, it’s also growing very slowly. I have 8 week trims on the top and keep the back shorter. It’s been 15 months since finishing chemo and I coldcapped and kept most of my short pixie. It’s very disheartening, I had hoped to be back at a good length bob by now, which online says 9/12 months.
@Alpha Thank you for sharing your story and struggles with hormone therapy and that you consulted your team and discussed your percentages and recurrence. You can’t be more informed than that.
I chatted to a friend who was a nurse for 15 years and she said all treatment is in consultation with a doctor, they no longer tell you what to take. They advise your risks and benefits and you decide after that, if it’s right for you. Menopause and Cancer charity are doing a chat with an oncologist about Tamoxifen and Aromatase Inhibitors as many people struggle so much with them. Maybe some of the posters on here could join the session and see how many other people are struggling.
Here’s the link
On a note about percentages. I had chemo and targeted treatment Herceptin as I was HER2+ that is an aggressive form of breast cancer but treatable. I was also ER+ hence the hormone blockers. My surgery before chemo was 87% chance of survival alone on Predict, the other 13% was made up of chemo, Herceptin, zoledronic acid and hormone blockers. Again, as @Alpha has said everyone is different, all our Predict scores are individualised but they are not the only test/evidence doctors use.
It would be so nice if anyone who posts on here can be supportive for those who can’t take hormone therapy for whatever reason.
I’m still on AI’s as I changed my AI medication and it has made it more manageable but it’s still hard at 56. I also take 4 other medications to combat my side effects. I was fit and healthy, strong from weight training and I struggle to do the things I did before. I have a family history of osteoporosis/ osteoarthritis and I have to have 3 years of zoledronic acid infusion every 6 months to help my bones because of the AI’s and chemo.
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Hello @naughty_boob
Thank you for posting that.
I’m really sad to have to report that what your friend who is a nurse said about “all treatment being in consultation with a doctor, they no longer tell you what to take and advise you of the risks and benefits” was most definitely not what happened in my case.
I had a telephone call from my surgeon after he got my biopsy results and during that call he told me that all my cancer had been removed “but we’re going to put you on oestrogen blockers as a back up to the surgery”. He didn’t go into detail as to what they are, didn’t tell me the possible side effects and didn’t give me my predictions with or without. He certainly didn’t suggest that I had a choice. The only other thing he said in that call was that I’d need to have bone strengthening infusions every six months. I then got a prescription for letrazole sent to me in the post. That was it.
It was only after being on them for a while when I reported my side effects and that I was feeling suicidal to my oncologist and asked to see her that I was given an appointment at which more details about the AIs were divulged. I was told my personal predict scores and we discussed the meds at length and came to a considered conclusion that I should not go back on them.
I have always felt that there is a bit of a “one size fits all” approach to many aspects of treatment, as well as a lack of holistic approach and overlooking of the mental health impacts of diagnosis, treatment and side effects. I have raised this with my oncologist a couple of times and she admitted to me that she shares my frustration with the system. She said that sadly with only being allocated 20 minutes with her patients every 8 weeks there is barely time to go through a basic update and that oncologists, constrained by both time and their individual trust’s policy and contracts for certain drugs, do tend to have to follow the same pattern of treatment for everyone. Of course that pattern of treatment/drugs works for some people but it doesn’t necessarily work for us all. In my case I learned a very hard way that hormone blockers were not right for me.
Sending you a hug.
Xx
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I’ve been reading this thread on holiday last week .
I had grade 2, 2cm lobular . No nodes involved .
Interestingly, after 14 months on Anastrazole , I decided to take a week off , whilst on holiday .
Within 2 days my vaginal side effects disappeared .
Prior to my holiday , I’d had a head MRI , as I’d been having dizzy spells for a few weeks .
They had stopped just before my MRI ( 6 week wait , despite possibility of secondary breast cancer ) but returned when I started the meds again this week.
My MRI was clear, so I’m guessing it’s the lack of oestrogen affecting my ears .
My bloods, ordered because of dizziness were a bit out , so having those retested soon .
It’s the ALP ones, which can be liver or bone . I’m guessing it’s bone as I had mild osteopenia .
And I’ve been feeling nauseous and tired again . Plus the vaginal dryness is back .
I’ve realised how rubbish these tablets make me feel .
Prior to my breast cancer diagnosis , I was a non drinking , weight lifting , healthy 55 year old , which I am grateful for as it made my recovery easier .
But despite exercise and yoga , I ache like an 80 year old .
It’s a really tough call whether to take or stop the tablets .
I’m going to persevere to my 2 year check , although I may be asking for vaginal oestrogen . I expect a fight for that one .
My benefit of AIs was just under 2% on predict .
I wish there was more support for those of us who suffer side effects .
I understand the oncologists want us to take them as it’s their job to keep us alive . The trouble is , nobody knows which of us will take the tablets and our cancer will never come back or which will take and it will .
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