Hi there ..

Well one of the most talked about items on here is the tamoxifen debate ... we can only say what's right for us .. I was told 3% ... others say slightly different ... I had horendious side effects for the first month or so .. esp emotional ... I was a wreck .. but managed to take them for two years .. till the pain really wasn't worth it any more .. I already have servere arthritis... so wasn't sure what was from that or the tamoxifen .. 

I gradually stopped ... taking a half for a few weeks and a quarter for a few weeks, and never got side effects for stopping .. my aches and pains , gradually got a lot better, to where I can now manage my pain so much better ...

But you may find others sale through .. but lots do have side effects ... personally l think for a 3% better chance it is a far better quality of life ... but really it's for you to do your homework .. work out the pros and cons ... and at the end of the day .. whatever you decide .. it's got to be right for you ... 

Chrissie x

Hi there Chrissie, very good of you to reply.  Thank you very much for sharing your experience and take on this.  How are you doing these days?  Are you now still taking otherHT drugs or have you completed the treatment?  I am sorry that you have severe arthritis. It is not easy and I hope you are finding ways to manage it. Good wishes!

I have been referred by the Moderator Nurse to 'Breast Cancer Now' site and have read that several patients had either stopped or did not go on HT.  What struck me was the chats on tamoxifen were from 2014/15 and interestingly their oncologists did not encourage them to take the drug and several were not even prescribed them because of their age(!)  Has there been a game change since then, I wonder....

Yes, you are right.  I have been researching and reading alot, and cant agree more that it is a personal choice.  
Keep well and big hugs to you, CHrissie. X

Hi,

I had invasive lobular carcinoma, last October I had a mastectomy as it was 4centimeters, large even with my ample breast (surgeon's description). I had lymph node clearance a month later but nothing was found in them despite the surgeon thinking he had felt something in the sentinel nodes. Fortunately I needed neither chemo nor radiotherapy but was told I had to take hormone therapy for five years to defer any recurrence.  Like you. I was horrified by the thought of the side effects.I really didn't think I could cope with them, and being in my seventies I didn't think it was worth it.   I put it off for ages, until my GP said to me that lots of people didn't get horrid side effects, and the benefits were really worth while, even at my age.  So if I took it and didn't get side effects it would be a win win situation, and if I did get side effects I could stop taking it! 
I bit the bullet and started taking Letrozole after the New Year, and guess what? Apart from early days hot flushes and feeling a bit queasy, I have been fine! I tend to be a bit stiff and achy when I first get up in the morning but that could be old age and it wears off soon enough.  
If things change I will stop taking them but for now I will continue with them and hope for the best. I was told to take bisphosphonates, for my bones,also, but the benefit was only 1% and I decided not to bother with them.

It doesn't make your decision any easier, reading two different experiences,  I know. so, hopefully you might hear from a few more people to help you.

Christine x

Hi

we all different and not sure it will help you, but in my case I've been on tamoxifen now for 5/6 months and have had no side effects at all.  I had the boxes sitting in my kitchen cupboard for around three or four weeks before I plucked up the courage to take them
 

Long may it continue.  Take your time and best wishes

JBee

Hello!!

well I feel I am always on here banging on about NOT taking HT (in my case Letrozole 2.5mg. ) so was very interested in what you had to say. I was prescribed Letrozole nearly 4 months ago and could not bring myself to take them. 
 

3 weeks ago I changed my mind. I now take a tablet every other day and have had no side affects whatsoever (yet!) 

I changed my mind simply  because the consequences of not taking them might cause me to have a recurrence. I just got the 'wind up' I think. Anyway so far so good. 
 

I am so hostile to taking them though I even gag when I swallow one!! Will try hard to persevere with them though and MAY even up the dosage if I stay unaffected. One positive (I think!) is I have started to sleep much better since starting them?! I have had trouble sleeping since my diagnosis. Often awake until 4am. However mostly that's stopped in recent time's. Difficult to know why. 
 

I am 68 next week and up until my diagnosis was generally in good health. I clearly  wasn't though (!) plus I have been diagnosed recently with osteoporosis. I have had an infusion privately for that though to save me taking any tablets. It's also supposed to give me 33% protection from bone cancer too so I felt it was a pisitive. Apart from that I feel fine as it goes. I swim and walk and row regularly so trying to do my best to keep myself well. Exercise gives some protection  from breast cancer too. As does keeping weight down. It all helps. 
 

Please keep me posted on your decision to take HT or not!!! It IS a dilemma. So many people on here are total heroes given it sounds as if their lives are dominated by pain and difficulty moving. Totally 'get it' why they are doing it. A cancer recurrence would be so scary and threatening. I just can't seem to shake off however the cost it would bring to the quality of my life!! It's a real dilemma eh?? 
 

Anyway I am giving it a go albeit not a wholehearted one!! 50% is perhaps the best I can do. Will see!! 
 

Go well. 
 

Kebbs x x 

Hello dear buddies!

I m grateful for your replies & sharing your experiences. It helps to know that we all go through the same emotional turmoil. It's indeed a dilemma of fear of SEs vs recurrence...

Had the benefit % been worth the risk of the many horrifying SEs it would have been an easier decision. Glad some sail through with no or less SEs & sincerely hope this continues to be the case for u lovely ladies

I hv chucked the dreaded pack of tablets right to the back of the cupboard. Guess I ll sit on it for a while & maybe like you, Kebbs, one day, fear of recurrence may shift the balance a little...

(Like you, i m active & workout everyday - to think that the possible SEs may jeopardise my routine frightens

me..).  
Will keep you all posted once I know.

Sending you all best wishes & virtual hugs! X
ps Kebbs have a smashing birthday & keep rowing ‍♀️! 

Yes I will celebrate in style despite Covid!!!

Its exactly what I did. Threw the pills aside for about 3 months and then thought OMG what if it comes back!!!  Anyway whatever you decide it takes a while to sort out what's right for YOU!   
 

Stay safe and stay well. Please keep me posted as I will you re. those side affects which so far have not raised their ugly heads!! If they do I will likely be putting the lot in the bin!!!! 
 

Kebbs x x 

Hi NeverU

I have had an almost identical diagnosis and operation to you, and I too am very reticent to take Tamoxifen. I had my lumpectomy in April 2021 and radiotherapy three weeks ago. I'm constantly asking myself whether my decision is the right one, and so was glad to find your post and the replies. 
Currently, I'm in the frame of mind where I'm prepared to take the risk and have a quality of life without drug side effects and a 'clean' body so to speak.

I don't smoke or drink any more, I exercise, eat healthily and maintain a positive frame of mind, and so with all these benefits, I'm prepared to take the risk over the 1% benefit that taking the drug may have. 
Like you, my thoughts go to anyone who has had a recent diagnosis, or like me, wrestles with the decision and also the bewildering amount of conflicting information about Aromatase inhibitor therapy. 
I wish all of you the very best, whatever your decision may be. 

Hi Jeezo and hello to everyone! Hope this finds everyone safe and well. It has been a year since I last posted! Gosh where has time gone?  My apologies for the silence.  

A quick update:  I have NOT taken a single tablet of Tamoxifen. Decided that I rather take the 1% risk and continue to live an active life.  Had a review with my surgeon and oncologist recently and all is good and they are very pleased with my healthy condition.  I am now a pecastarian, avoid diary products and alcohol, and also exercise daily. I know the change of lifestyle is not for everyone, but it works for me and I feel great. There are many books worth reading (diet etc) - mostly written by ex-cancer patients on their experiences and journey.  As our buddies advised (above posts), do your research and make the decision that suits you best.  

I am happy with my decision and thank God, so far so good.  

Sending everyone best wishes.  Big hugs x

Hello,

I had a lumpectomy in May 19, 3 weeks of radiotherapy and then tamoxifen. Struggled a bit with joint pain but nothing major. 10 months on I developed a blood clot in my arm so had to stop the tamoxifen. Was told the benefits of tamoxifen was less than 1% so not really necessary. I have recently had an injection to stop my ovaries working as I was still having regular periods, I'm 49, and am now on letrozole but my moods are terrible, I have a constant tummy ache and my skin is awful. I was previously offered a full hysterectomy with removal of ovaries so am thinking that is the way to go. Am due my 2nd mammogram this month, does the anxiety ever leave