Stopping Anastrozole

[pips88]

@Jean the Joker 

Have you looked at predict breast cancer? You can input specifics related to your diagnosis and it will give you a more tailored set of statistics. It's helped me make some choices. 

Pips x

[Jean the Joker]

Thank you Tappin for your response. And I do agree that everyone's experience and prospects are all very individual. So much depends on geno-type, stage at diagnosis, hormone receptivity, age, life-style, ec. And even two people roughly same age and with similar prognosis, can have different experiences on the medication. 

I'm curious as to how you are finding the 'Estrogen Matters' book? I thought it was mostly about HRT for younger women. I'm trying to find out as much as I can about the blocking of Estrogen in post menopausal women. I know we do need it and I know we lose it naturally after menopause - but my question is this: Is the additional blocking of estrogen ( Anastrozole)  for the purposes of avoiding cancer recurrence( in someone with low risk) , just a step too far? I'm trying to find out my risk with and without this medication. If anyone out there knows , please post. Thank you! I'm now 18 months after operation, radiation and have been on meds this long. I have oncology appointment this coming week- 24th. Last time it was a perfunctory check - no blood tests, no bone tests, and naturally I'm concerned that something could be going on but it's not being picked up by the doctors. I'm 75 but very active for my age, healthy mediterranean diet and regular exercise: swim, hike, dance, garden..etc. But no medical professional asked ever asked my about my life-style - only if I smoke or not! I guess one size fits all! No! 

Thanks for posting, 

Jean 

[tappin]

Because although I am now (just) 78 I took HRT since my early 40's right up until after my lumpectomy and discovered the grade 1  2mm and 12mm tumour DCIS were oe 7/8 +. I went Into menopause like a drop down a liftshaft! As you say the tamoxifen only affects the breast tissue, not other areas of the body, so I'm hoping it will allow my bod to recover from the onslaught of Letrozole. I am reading the Oestrogen Matters book at the moment and it makes interesting reading-most trials that came up positively in favour of oestrogen were suppressed and most of the trials which did the opposite were lauded-I think there was a lot of media pressure by the drug companies to promote their wares. Everyone's journey is different, different outcome predictions, so many young women suffering, the more we read about others experience the better informed we will be and able to make our own judgements.

[Momcat]

AGLAS          I kept telling myself side effects will improve or at least settle into a tolerable means. That didn't happen. I totally understand your barely being able to get out of bed., no energy at all, terrible joint pain constantly, can't sleep but when I did fall asleep, it would be for 10 hours& that's totally not me.  Food didn't taste good anymore & I wasn't even hungry.  Ive always had long, thick hair but it was getting so thin, i was almost afraid to brush it. All that made major depression.  I had to regain my life, so i quit all the poison & its amazing how you start to feel better again.  I think the doctors go by the one size fits all book--take the pill for 5 years, or take it for ten years.  Ask about the Oncotype DX Breast Recurrence Score testing. It gave me piece of mind & I made the decision that was right for me- no more poison drugs. Best of luck to you.

[Momcat]

I should have looked it up. It's Oncotype DX Breast Recurrence Score. It gives you a score of reocurrance, a percentage in 9 years & with chemo.  Also other info. It was piece of mind- every doctor should order this testing & every insurance should be required to pay It! I was told that a piece of the tumor is in some storage facility for ten years- kind of crazy to imagine that place. Definitely ask about this.💟

[sparkle66]

Hi Tappin, 

Im interested in why you are taking tamoxifen instead of letrozole?

I was thinking about this as don’t want to take letrozole and believe tamoxifen blocks oestrogen in the breasts , so not as harsh

Im not sure if I’m correct though x 

[tappin]

The letter to you and your GP from the oncologist following your surgery should identify the size, type and hormone receptor status. if it didn't ask for it, as I think every surgery result goes into the pot as it were for future reference.

I had my surgery in October '21 for early Grade 1  2mm and 12mm DCIS, no lymph node spread, and because I was 75 at the time was put on letrozole.. BUT, I had been on HRT for over 30 years, and so when I stopped taking it cold turkey I suffered a full on menopause! The side effects were awful so now I have the vaginal oestrogen tablets to try, and am going to try the Tamoxifen instead of the Letrozole. 

Try and get hold of the book Oestrogen Matters, I bought a used copy from Amazon, or try the library, it makes interesting reading, including the theory that women can take Tamoxifen (or anastrozole I assume) for 2 years then take 3 months off to alleviate symptoms with not depletion is protection.

[Jean the Joker]

Thank you so much, Momcat, for your response! You are very brave for stopping. I'm not sure what my 'oncotype' is - and I can't , for the life of me, get any % figure of my chances from the oncologist. Also I don't know if they took any sample from the tumour - it was in June 2021 I was operated on. But I have appt with him next week on 24th and now feel I have a list of plenty of questions to ask him. I also want a densometric test as I know this stuff leaches calcium from the bones and already I have arthrosis and arthritis so not good for me. 

Thank you so much!

Best wishes, Jean 

[Momcat]

Ask about Oncotype testing. It tests a piece of the tumor and gives several scores regarding reocurrance, etc.  At 71, I was very active, endless energy, normal aches & pains from overdoing things, joint replacements, etc but nothing major. Anastrozole and Letrozole destroyed my quality of life.  Depression, joints aching all the time, no energy, no appetite, dead tired, crabby.   It came down to do I want to be increasingly miserable for the next 5 years, or do I want to come alive again and enjoy life.  Within 3 days of quitting, I started feeling better. Best of luck yo you.

[Ginny338]

Hi - I started this thread in 2022, 6 months into my taking Anastrozole. Like many I had very few side effects for the first six months but then they all came at once. A usually happy person I’d argue with anyone, I developed large painful lumps on my feet and my hands became bent claws. My GP and my oncologist both agreed that I should come off the tablets as the less than 1% additional protection against a recurrence of cancer was not worth the deterioration of the quality of my life. Five months after stopping I am almost back to normal. Still have a few flushes but my feet are so much better as are my hands. The mood swings and feeling down went away within weeks. My oncologist has given me an alternative AI to try if I want to, as yet I’ve not. Everyone is an individual- I’m 67, size 8, I had an early stage 9mm ER positive tumour with negative lymph nodes. I’m currently in Thailand with my husband- just enjoying life. I’m not advocating others do as I have, it was right for me. Really hope this helps xx

[Jean the Joker]

Dear Kikat, 

I sent off that message to you in a hurry  this morning as I was going out, and I  now realize without acknowledging your own suffering. I'm so sorry to hear that you have had this BC now three times. And how frustrating and frightening it must have been,  especially as your risk was deemed so low. I hope that now you're cancer free and enjoying life to the full again. My own cancer was ILC - Invasive Lobular Carcinoma, grade 2 - Oestogen positive  and I think it's the 'invasive' part that frightens me most. Although according to the surgeon, that simply means it has moved into the tissue. But thankfully , nothing was found in the lymph nodes which I understand is the  most common route for metastasis. As you rightly say, it's just so difficult to predict. 

But thank you  so much - you have given me another angle to consider now. Of course, I'm much older than you - 75- but have always been very active and fit so for me it was a big traumatic shock , as I'm sure for all of us with this diagnosis. 

Good luck ! and many many thanks,

Hugs, Jean  

[Jean the Joker]

Thank you so much for your response. It is very helpful! 

Safe travels on your journey- wishing you all the best! 

Best wishes,Jean

[Kitkat23]

Hi Jean

I'm sorry you haven't tolerated anastrozole well...I myself am on letrozole almost 3 years in...another 7 to go.....I asked myself the same questions ....and I guess the answer is we can never know our own individual risk....just a population risk relating to our tumour size/grade/type etc....according to predict...my benefit from letrozole is 6% ....but then it could be 99% or 1% to personally...I would just never know.... ive had primary BC 3 times.....First time round was dcis 4mm....so statistically my risk of recurrence was 1 to 2 % and yet I still got it twice more ( once a recurrence and another completelynew cancer) .....I'm not a risk taker by nature...I'm 58 so still relativelyyoung 😁....and my sides effects are tolerable ( although not great) .....so this is my rationale for continuing to take....but I completely get why some people choose to stop due to debilitatingside effects... ..... in my case it was the hormone receptor status that tipped me in favour of taking ....my last tumour was ER+ 7/8 .....whatever you decide I wish you well and would definitely speak to your team before making any decisions ....take good care 

[Jean the Joker]

Thank you so much for this post. It has helped me enormously! 

Yes, we need Oestrogen for our bones and also for our brains to function well. Hormones also affect mood and I can honestly say since I've been taking Anastrozole ( 18 months) that I am not the same person at all. I have  dreadful mood swings between anxiety and depression, not to mention the depressing post surgery horror in the mirror every day. But doctors , while doing their best to prevent  a cancer recurrence, just don't seem to understand how devastating  these adverse effects can be on an individual. Also, I believe we should be moving towards a more individualised approach - statistics only tell part of the story. After massive surgery on both breasts ( to take wide margins) and lumpectomy, followed by 4 weeks radiotherapy I have to question the necessity of this oestrogen suppressant in my case. My tumour was small, slow growing ,grade 2, HER positive, and not in the lymph nodes. Surely with all the treatment to date, the likelihood of recurrence in my own case is minimal? But I understand that a doctor would not want to sanction coming off it in case of recurrence. I wish I could find out what my chances are with it and without, and if the difference is minimal, I'll take the chance. If you're reading this, and can help with information, I'd really appreciate it. Thank you - to all you wonderful brave women! 

[Jean the Joker]

Hi there, 

I had breast cancer surgery June 2021- massive double breast reduction ( advised because I had large breasts and this was deemed the safest bet) and lumpectomy followed by radiation for 4 weeks. It was grade 2 , not in lymph nodes, and oestrogen positive. Since September 2021 I've been on Anastrozole and I notice more aches and pains in my joints ( always been fit and active - swimming, hiking, dancing) and worryingly, a serious loss of memory. Having been an intelligent, active , fun-loving person , I seemed to have morphed into a depressed dummy who is always complaining about pain or overreacting and yelling about minor irritants. I am supposed to stay on this for 5 years but I'm trying to find out what are my chances if I stop it after two years. Like someone else mentioned- at 75 ,  I think it's Quality of life that matters now and not Quantity. Because why would you want more of this? 

If anyone reading this can offer information I'd be most grateful.

Bless you all-  you wonderful women! x

[AGLAS]

thank you for your informative response. It is interesting to hear this viewpoint and how there's been a clear connection with joint issues with yourself when on and off oestrogen suppressants. Arthritis is prevalent in both sides of my family too and it grieves me to think I am escalating this condition. 

I have begun aqua aerobics aswell as seeing a physio regularly. I will give it till Christmas I think, and if I'm still the same or worse will speak to oncology again.

[AGLAS]

Thank you for your reply. It's so difficult to know what to do isn't it. I've realised each case is unique and we are guided by the professionals. I too contine to exercise more than I ever did to combat the effects. I hope you get the answers at your next appointment. It's hard to remain positive all the time tho isn't it.

Regards Aglas

[Ginny338]

Hi Aglas. I was very similar to you but the bad side effects did not start until after six months and then they came fast and hard. I’m on a break just now and am not sure will resume. I have an appointment with the oncologist next week. I had hands curled up like claws and that has eased a lot but the problems with my feet are much slower to improve. I have to see my GP next week. I also started getting numb fingers but that’s improving fast. I’ll post what the oncologist says. I find that the more active I am the better but it is tiring to run round all day! Hope this helps you x

[Wendyphillips]

Leterzole: The experience of two sisters after breast surgery.

I hugely sympathise with your situation, its very hard to bear when you are used to an active life.

My experience after early-stage oestrogen receptor breast cancer, (lumpectomy) is identical to yours with one exception.  I refused any treatment to supress oestrogen.

My sister however has taken Letrozole for some 12 years, she is now 84.  She complains of tiredness and difficulty sleeping.    Has never had any arthritic type aches or pains.  She has mum’s genes.  I have dad’s!

Against much advice at around age 67 I resumed HRT to treat very debilitating menopausal symptoms.  I regained normal fitness within 3 months, no menopausal symptoms, lost weight and to my surprise and delight, all signs of the arthritis which had begun to seriously affect my joints, even carpel tunnel syndrome disappeared.   

Enjoyed a wonderful 5 years of energetic pain- free living.

After surgery I was very afraid that stopping HRT (Oestrogen) would affect my joints and unfortunately, I was right.  Within 3 months of the operation joint pain was back along with carpel tunnel and has worsened to the extent of needing need replacement surgery. 

 For this reason (and with an excellent prognosis after surgery) I chose to refuse any medication suppressing oestrogen.

I might have been blaming letrozole or any oestrogen suppressant for my current miserable condition.  I am in fact blaming my genes and the withdrawal of the HRT which gave me that wonderful 5 years of relief.   I can’t imagine being worse but surely Letrozole would not have helped.

Many women take the oestrogen suppressant with no side effects but aware of clear scientific evidence that oestrogen has a major positive effect on joints, (and many other things) I feel that oncologists should pay more attention to necessity of its use, especially when the prognosis is good, and the patient is as old as I was.      AND especially if arthritis is prevalent in the family.

[AGLAS]

I have been on anastrozole for 6 months after surgery for oestrogen positive breast cancer, removal of sentinel node and 3 weeks of radiotherapy.

At first I had no side effects but gradually pain in my joints, especially back knees, and hands have got increasingly worse. 

I was active before, walking between 10 and 15 miles a week, now I struggle to get out of bed each morning. This has had a detrimental effect on my mood. 

Battling to remain positive, I force myself to keep moving, stretching, exercises, walking, no alcohol, and keeping busy but the pain is constant when I'm standing and as a result, am SO tired.

My oncologist has asked me to persevere and we hope that this is the peak with my body settling down soon but I'm struggling.

Has anyone out there found things improve? Just want some reassurances please. 

[tappin]

Hi wavy locks, so sorry to hear of your side effects. Whilst waiting on surgery for the prolapse has a pessary been suggested to you?  I have similar, but did not want to risk the terrible mesh repair, so asked about a pessary. The dr jumped at it! I have had one now for three years-it is changed every year, soft silicone which you cannot feel at all, and it holds everything in place, but it works wonders! I had dragging back ache before, and difficulty spending a penny -now no problems. Even if it is not perfect it's better than putting up with the symptoms until surgery. 

[waveylocks]

Ho Ginny,

apologies for the delay in replyin.g i did not receive a notification of your reply. 

I was offered a break by my consultant. He told me I would need two months before I would feel any benifit.  As I had been on it for seven years the effects had accumulated. So a short break would not have worked for me. The option was to move to a different type like Tamaxophan which works differently but he warned me it would induce hot flushes, weight gain etc. Given that the impact on the reoccurance rate after 7 years would be less than 5% I chose quality of life. Im tired of all this treatment and its awful effects..

It is now 4 months since I stopped taking it. I have improved. My thinking is clear, and my energy levels have improved. My memory remain poor but better. I am less stiff but still an issue after sitting for a while. The effects of taking this for so long has caused me permanent damage though. I have bowel incontinence and a severe vaginal prolapse which can only be helped with surgery. On the waiting list. The bowel incontince cannot be put right so having to look at management methods instead. Both of these are now known se's but not when I started taking it. 

Am told by my gynaecologist that my estrogen levels will never be what they were becuase I am post menopaise. Normally estrogen would run down slowly as the production through the adrenals is far far lest than the ovaries. So my estrogen levels will remain very  low but not non existant as they have been. He also said the effect of these estrogen blocking medicatioms does terrible thongs to the body. I agree with him. Im living proof. 

I personally think its all about a balance. Qof L is an important factor when taking something long term like this. Given that my cancer was extremely aggressive and multifocal its highly likely it will return at some point. So its important to me that I have a good life before it does. Non of us live for ever. As my consultant says I have had the bulk of the benifit of taking it so why would I inflict further damage on myself.....ruin my brain for the sake of some tiny improvement in reoccurance rate 

You have to look at this in the context of your own cancer profile, the effects on your body, the QoL and the level of reoccurrence prevention it offers. You sound esrly on in treatment so the reoccurance rate improvement is likely to be far greater but thats a question you need to ask. Switching can also help. I had terrible joint pain on Letrozole but not Examastane so that worth considering too.

[pjmonroe]

I took Anastrozole for 3 years, with no problem at first. I am 72 years old. One day, a week ago, I started feeling very sick. My blood pressure was 200/100. It had been creeping up, but never that high. I had developed joint pain & a hard time walking normally. I had a foggy memory and was very tired. After a lot of research, I stopped taking Anastrozole cold turkey. I don’t believe I would have lived to the 5 year mark if I had continued taking it. After 3 days off Anastrozole my blood pressure is normal and I’m recovering. Thanks for all the info provided by this site. Blessings to all!

[Ginny338]

Hi waveylocks - can I please ask if you ever took a break from Anastrozole? I've been on it for 6 months, no side effects at first then the headaches and nausea which only lasted a short time but then in the last 6 weeks they have all woken up - painful swollen feet, mood swings and joint pains are the worse. I can cope with the hot flushes. My BC nurse suggested a 4 week break which I've just started as she said when I resume the side effects may not return. Even after a few days off my mood is back to normal. Thanks!

[waveylocks]

Hope youre ok. I think the secret is to take it case by case. Did your Oncologist look at Predict? If its suitable? What was said about the reoccurances of more tumours? The research out there has to be looked at in reference to your case. Ask a lot of questions! You may choose to go for a middle route and take the best of what it offers. Please bear in mind that it tends to be people who have had problems who report it on here. The ones who dont have se or they are minimal tend to not. I found I was ok for several years before I started to notice ses kicking in. Then they slowly increased over quite a while before I decided to stop at 7yrs. Its not black and white.....I hope this help.....though am late in my response to your post!! 

[waveylocks]

I think there is no right or wrong whether to take or not. You have to weigh up your risk factors fir and against. Also finding an extrogen blocker that gives less se,s helps too. I was on Letrosole at first my onc switched me because of the awful se effects. So I settled in Examastane and was pretty good on it for several years. 5 years went by and I felt ok....less energy but was ok. But thrn other ses started to kick in and floored me. I just think as a woman am not built to have no estrogrn in my body. The ses do accumalate. You have to weigh up the pros fir sbd against. Its the only way. 

[Yorkie]

Yes we are certainly all unique and have completely different experiences of breast cancer treatment. I too had Herceptin which absolutely floored me and gave me horrible side effects.

With the Anastrozole, the oncologist recommended 5 years if your lymph nodes were clear and 10 years if not. I could not have tolerated them for 10 . My hormone level was 8/8 so with this high level, it made sense to me to try and find a way of coping with it for the 5 that I did.

Another point to consider is the brand type. I am not alone in saying that although the active ingredients are the same, the fillers are not . I found that I tolerated the brand Accord the best so always asked for that one. Teva had the next amount of side effects for me . I had the Mylan brand once and felt horrendous . Finding a brand that suits and sticking to it if possible can eliminate some of the side effects.

Good luck to all. 

[JDrumright]

I was extremely sick from it at well! I also feel that it would have killed me, and likely in less than 4 years, I certainly would never have made it the 10 years they wanted me to take it.

[waveylocks]

I was on Examastane for 7yrs....Oncologist recommended 10yrs. There is a further 5% reduction in reoccurance between 5 & 10yrs. By year 7 completed I had a vaginal prolapse impinging on bowel causing bowel incontinence, memory & high executive functioning deficits, extreme fatigue, needed bone strengthening treatments. All these things a consequence of Examastane.  My QofL had nosed dived. I had a very aggressive form of bc that was large 10cms so had the full works & Herceptin that permenantly affected my heart etc. Am grateful to be here & in remission but as my Onc said there comes a time when the impact on the Qof L is greater than the benefits of treatment. He recommended a 3 month break & if I wanted could go onto Tamaxofan if I wished but no pressure to do so......Ive decided not to as he said "You've done your time."  - cant face anymore for the potential 3% benefit (my calculation). Looking at Predict whatever I do my profile of bc means it is highly likely to come back at some point & snuff me out. So Id like to enjoy the life I have now. I'm 66yrs. None of us know how long we will live....most people who haven't had cancer live in the fantasy of 80score years and more life span. Without BC treatment I would be long dead by now for sure so to me am living in extra time and I plan to enjoy it. 😊🤣 xx 

[Jammin]

I'm glad you did good! But for me, the extreme issues I had would have destroyed me. I have never been so sick and had I kept taking it I would have been in the hospital, or worse. I guess everyone is different but it's not something I will ever do.

[Yorkie]

I am writing this post to encourage and help those who are thinking about giving up on anastrozole.

Before doing so please consider that oncologists would not recommend it unless they thought it would help, it does after all cost the NHS a lot of money.

If there is only a small percentage of benefit, surely it must be better than potentially having chemotherapy in the future or not living as long? .

I have just completed 5 years of it.  Each day of taking anastrozole was a daily battle of side effects but i found a way of getting round it.  The most difficult side effect was constant fatigue. The answer to it was to keep as active as possible even though it seems at the time that its the last thing you want to do.

Try changing what you are doing frequently too if you can when you feel yourself dosing off during the day.

Dress in comfy fitting clothes that you can remove quickly for the hot flushes.

Use YES vaginal moisturiser .

Keep a packet of polo's at the side of the bed/in the kitchen/ in your bag to suck on when you feel sick and go out in the fresh air.

Sleep with a small cushion between your knees to improve muscle and joint aches, made worse by a night sleep when you are still for a long time. Walking will help with this too.

Forget lotions and potions that claim to make your hair thick again and keep a shorter style and use coloured head bands and nice earrings.

Be kind on your brain, it will come back . Try not to worry and only do what you feel capable of doing.

When you have finished the 5 years, be proud of yourself and 20 days after stopping it, look back like i am doing today and think, how lucky i am to be here and how much better i feel already!

I have felt very grateful over the 5 years i have had surgery, chemotherapy, radiotherapy and hormone therapy ,to the people commenting on this forum where i have found good advice and support.

This is my final blog on this forum now and i wish all readers good luck!

[Kaz17]

as I said before, we’re between a rock and a hard place. I was in turmoil as to whether I should stop taking it or struggle on. I relate to all that has been said with regards to the awful side affects. I had a chat with my GO and she suggested I tried an anti depressant. I didn’t want to take any more drugs but for a trial I said I would. I am now taking Sertraline 50mg. I have to say that it has really made me feel better. Not only mentally but physically too. It’s like I’ve gone back to pre Anastrozol. I don’t have any bad side affects. At all. I am glad I tried it. So I will continue to take Sertraline while I’m on Anastrozol which is for another two and a half years. 

[Jammin]

After taking that medication for 9 days I was sick for a month. I couldn't eat, I couldn't drink water, I couldn't hardly get out of bed.  That medication is horrible and I will never take anything like that again. Glad you're doing better 

[Momcat]

I stopped anastrozole because it was killing me & I wasn't going to take more drugs to counteract it's side effects, especially my blood pressure which increased 20-25 points.  I reached a breaking point and chose to quit anastrozole & come back to life.  Now three months later I feel so much more normal. I'm normally a very active person and at 71, quality of life is most important.  Anastrozole is poison.

[Barcie72]

Hi yes I stopped taking the medication and feel so much better. 

[dash]

How are you now?  Did you stay off anastrozole. 

[Caliandra]

Thank you for your message.  I am having quite a bit of hip pain and muscle pain and feel like I have aged quite a bit.  I stopped taking Anastrozole for a week and felt quite a bit better. Now my oncologist recommends taking an injection to prevent fractures and yet the Anastrozole is the cause of it all.  I am a Caregiver.  I have been through Chemo and Radiation for 2 other cancers, one possibly caused or promoted by the Tamoxifen.  I would like to stop, will try the magnesium and see if this lessens the pain.  Will not take the injection for something caused by the Anastrozole.  Thank you for sharing. Really would like to feel better and have more endurance.

[Kitkat23]

Hi Barcie

i wish you all the best for the future.

I have no wish to alarm you at all and it’s great you are low risk, however I too was low risk after my first diagnosis….4mm DCIS so no spread from duct ( never mind the breast) …it was classified as grade 0 cancer pre invasive…. I was ER+3 ……I was told I had a 1 to 2 % chance of recurrence ( absolutely tiny) …however I was unlucky, I went on to have BC twice more( although you could say I was lucky as it was primary BC again and I was able to be treated with curative intent)….so I guess what I’m saying is that statistics are just numbers about a BC population….they are not about the individual…. I was 47 at my first diagnosis 10 years ago….if you are completely sure you have made an informed decision you are happy about that’s great….if not then definately speak to your team again before committing to your actions.

Best wishes to you

[Barcie72]

Thank you so much for reply. I’ve looked at my notes I am ER 8 and PR 8 so obviously hormone therapy is a very good option. My tumour was tiny, 10mm. No spread to lymph nodes. I was 49 at diagnosis recently turned 50. My mother died of breast cancer ages 66. She was diagnosed at 55 and took tamoxifen for 10 years after treatment. I I’llm not normally a person to give up at the first hurdle but feel so low. Neither am I a risk taker but because my tumour was so small and hadn’t spread out of my breast I feel that the risk of recurrence to be very small.

im so sorry that you’ve had to go through this twice. If my risk of recurrence was high I would definitely continue all treatment that was offered to me.

kind regards

B xx 

[Kitkat23]

Hi Barcie

my hospital use the Allred score ( as do lots of hospitals) ….it’s like a tool which identifies from histology results, which ER + cancers are more likely to respond to hormone therapy …. It’s a score out of 8…. I was told 7/8 and/or 8/8 scores have a good ( up to 75% ) chance of being beneficial…and then it’s a sliding scale down …. When I had BC previously my ER+ result was 3/8 and me consultant said I could take it or leave it with hormone therapy…. This time ( at 7/8) he said the wise decision would be to take it …..I’m not a risk taker in any part of my life so i was always going to give it a good go….and to be fair…although I have all of your side effects and more( although maybe not to a similar degree) ….they are not sufficient for me to stop…. Having had BC 3 times I will do everything I can to avoid a recurrence or a diagnosis of secondary cancer….. but I completely get that we are all very different…. I’m 57 now so maybe a lot older than you are…..I take citalapram for anxiety…I had my dose upped …..and am prescribed propananol PRN to take when needed for anxiety…..i hope everything works out for you…. It’s like ‘Hobson choice’ isn’t it 

[Barcie72]

Hi kitkat

im new to this website. I was diagnosed in October and had a partial mastectomy then 15 sessions of radiotherapy. I started tamoxifen in January but felt so awful my oncologist switched me to a an Anastrozole. My mood is seriously awful, complete loss of sex drive, I ache everywhere in particularly my feet and legs, hot flushes and poor sleep. I have decided to stop taking any more tablets. I am already on fluoxetine for anxiety and my doctor just says to increase the does which I’m not going to do. Prior to starting the ana tablets I was coping. 
sorry for the long post but you mentioned your ER status was 7/8 mine is 8 what does that mean?

many thanks

B XX

[FrauCassidy]

Hi Ladies,

I believe the risk of uterine cancer are higher than tiny. I know of someone who took Tamoxifen then died of uterine cancer. It spreads fast if undetected. Plus my gynecologist wanted to do yearly uterine biopsies to make sure to catch it. This alone scared me. And makes no sense either; to take a medication for breast cancer that can give you another cancer!

I too have stopped all hormone blocking treatments. Although for myself I did not have any spread to my lymph nodes. I also did not require chemo. I had lumpectomy and completed radiation treatments. I was 54 at the time of DX, now 56. I am through menopause. My last bloodwork after a break from Tamoxifen indicated trace amounts of estrogen. My oncologist still wanted me to take the blockers. I said it is really necessary? She said it can come back anywhere if it comes back, not just BC. So I gave anastrozole a try but cannot do it. It was horrible. I felt like I was aging super fast and everything was becoming a problem. I felt 100 years old in a short 3 months! I stopped a little more than 2 months ago and feel so so much better! I may be making a huge mistake but I just can't live like that. None of us are guaranteed extended life or shortened life for that matter. I am taking my chances and having faith they got it all. Prior to BC I was taking an estrogen gel! Now, nothing but what my body has. I don't feel my body makes extra estrogen that's why I was taking estrogen in the first place. But the little my body has, is enough to feel good enough to live life.

However, had it spread to my lymph nodes, I would take it, it may just give you some extra time. This decision is not for all cases. 

[MellyL]

Absolutely JD! No guarantee either way and percentages are just statistics. 

That's why I started this thread, why I've stopped all hormonal tablets now and declined chemo.

After 4 years, I am going to end my input here and forget BC as much as possible.  Love life! X

[JDrumright]

You may live just as long or longer without Anastrozole, as taking it doesn’t  guarantee the cancer won’t come back, and not taking it doesn’t guarantee it will come back. I have done quite a bit of in-depth reading about it, it reeks havoc on your body! I’m only 54 and I elected to stop, due to dangerous and miserable side effects. 

[JDrumright]

My oncologist told me that the risk of uterine cancer from Tamoxifen is tiny. But, at this point I don’t know what to think!

[waveylocks]

Hi Momcat,

please can you send me the data on tamaxofen " frequently causing uterine cancer"? Thanks. Am on a break from treament after being on Aromasin for 7yrs and my oncologist wants to move me across to tamaxofen for the last three years. 

[waveylocks]

I have been on this drug for 7years. My oncologist wants me to take it for ten. Am told the second five years gives a further 5% reduction in reoccurance. I didnt feel too bad for the first five years, fatigued was my main symptom but have declined especially in recent months. I am now fecal incontinent and have a uterus prolapse......the pandemic prevented access to any help. Am waiting for an appointment with gynae but there arent any so have had to wait a further two months untill the end of June to even ask for an appointment. So heading to the incontinence team and a pessary to be fitted. Im 65 and I feel soooooo old. I am exhausted all the time and if I push myself to do more I crash. Ended up seeing my oncologist privately as the NHS had signed me off. So he recommeneded I stopped. This drug has affected my brain  -memory and processing. I cant work at the moment because I cant concentrate. I think I shouldve been switched at the five year mark to be honest. Am on a three month break now but have serious doibts about starting on tamaxofan. Is it worth it for a furthe 3% rediction of reoccurance. Am highly doubtful of that. I think my body has had enough and it needs to breath! 

I would advocate the five years for sure.......for me it reduced the reoccurance rate a lot. Am lucky to be here in full remission as I had stage 3a breast cancer, HER2+, estrogen+ Grade 3 and so had the full works including reconstruction. I am clear I would not be alive still without this treatment and for that am really eternally grateful but we are all different and I think Ive done all I can now and for me it is time to stop. Quality of life is just as important and my oncologist agreed with me on that. Currently my QoL is rubbish. Ive a feeling that if I decide not to go onto tamaxofan in three months time, he wont push me. I stopped four days ago and feel no different.......was told it would take a Couple of months before I start to feel better. Cant wait!!  This is not to say that no one should do the 10yrs but just that to keep reviewing it and take advice from your oncologist. No one knows how long we will live but given a diagnosis of bc just means you become aware of your own mortality. My life has been saved by all the amazing treatment and now my time has come to enjoy it! Just need to recover from having no estrogen in my body for 7rs & get my womans troubles sorted.......and then am off to explore the amazing world out there!! 

[JDrumright]

I agree, for me Anastrozole side effects continued to get worse over time. I took it for about 18 months before deciding to stop due to side effects and leaning about additional health problems it could cause. At only gaining me about 1-2% cancer survival rate and about 20% loss in survival rate due to heart problems I decided a naturopath would probably help me more than the drug, so I elected to stop taking it. 

[JDrumright]

Wow, your side effects sound just like mine, everything other than the joint pain is to the tee! My blood pressure has also greatly increased which I suspect is causing some heart valve problems. My oncologist says that high blood pressure can be caused by many different things and can start at any time in life out of the blue, and he doubts it is from Anastrozole. I find it coincidental that HB started within 3 months of starting Anastrozole. It seems as thought my reoccurrence rate with anastrozole is about 1% and without about 2%, my gut tells me it will cause more health trouble taking it than not. 

[Momcat]

Glad you are feeling better. I know exactly how you were feeling. I reached the breaking point and knew there were only two options, check out or get well on my terms. I feel better day by day, getting the poison out of my system. You roll the dice and take a gamble -- but really we all do that every time we drive down the street, not knowing what wacko might come along.