How difficult for both of you.
Nothing has an effect you want - just adds to the problems!
Has any doctor suggested CBD?
Hi Kerryb, just an update on how I am getting on with Tamoxifen: I have been taking it since November and not had any bone pain. My mood has lifted and I feel normal again. Insomnia has improved greatly. I am post menopausal so Tamoxifen improves bone density. It also lowers cholesterol (cancer cells use cholesterol as a pathway through the body). I still get hot flushes but they are not so intense and claustrophobic.
I would definitely not go back on Anastrozole.
Did you make any decisions on what to do regarding taking another AI? I hope you are feeling ok. Good luck
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@jcoll21 this is really positive to hear, Iām meeting with my oncologist for the first time today - its still unclear if Iāll have chemo first, waiting for some genomic results to see if its worth it, and then it would be the AI. However, all Iām reading our hideous side effects so it really helps to hear that you are managing on Tamoxifen.
Hope all goes well today 
and you find a treatment that suits you. Best wishes, Jane xx
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Hello,
I am new to the forum and just read your post from last March regarding all the side effects your wife was enduring. I am curious to know if you/she has found any resolutions and if she is still suffering from these issues. I feel terrible for her and you as I know what it is like. Her symptoms sound very much like what I went through in 2009 while in the peak of menopause. I wonāt go into all the details just yet because if you have found a solution, there is no need to rehash it all (hopefully you have!). If you have not found any solutions, I am happy to share what did help me.
I write this because I have just finished radiation for my second bout with BC and I am about to go on Anastrozole and I am petrified of going through all those symptoms again. I chose not to take it the first time because I had DCIS, stage 0, had surgery and radiation on that breast. Against my Oncologist"s advise, I thought my chances were very good of no return. Well, here I am again 6 years later with stage 1 ER+ in the other breast. This time I will try the medication and see if I can tolerate it.
Good luck to your wife and you on this crazy journey we are on.
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So sorry to hear of your 2nd bout of BC - everyoneās nightmare.
It sounds like your first cancer was different to your second - are they totally unrelated, rather than a recurrence of the first one?
Anyway, the HT drugs canāt offer 100% guarantee and we have to weigh up our own risks one way or the other. In your circumstances, I would have made the same choice as you - indeed I have refused Letrozole having weighed up MY risks. According to the figures, they improved my recurrence risk by 2% and I was then left with a 2% risk anyway. If it comes back, thereāll be no way of knowing if it would have come back anyway even if Iād taken the drugs!
Make sure youāre allowed to discuss it all thoroughly - Iām surprised how many women arenāt given the choice and/or help to be part of the decision making in their treatment.
I wish you the very best of luck with your future treatment. Whatever you do, donāt ever blame yourself for not having taken the HT drugs the first time with such low risks - it could have happened even if you had!
Hi there,
I asked my surgeon and Oncologist if the second occurrence was a new cancer or a recurrence of the first one. They both said there is no way to know for sure but, the Oncologist said he would āguessā it was a separate occurrence.
As far as the HT goes, it will only lower my chances of a third occurrence by single digits which was the exact same number I was given the first time. So who knows what will happen! I have finished my radiation with no issues and have been on the HT for only 1 week and so far I donāt have any noticeable side effects. I hope it stays that way!
My oncologist did say that if this particular one gives me trouble he will switch me to a different one and if I canāt tolerate that one, he will not twist my arm to take anything. So I get the feeling he is not convinced it would be worth my quality of life to continue the HT.
Thank you for your encouragement and I hope you are doing well.
Iām doing well so far thank you - touch wood!!!
It does sound like he thinks itās worth trying with the HT but not at the expense of quality of life - and I get the feeling a lot of women fall into that category but donāt get such a sympathetic hearing?
Anyway, I do hope you donāt get any real problems with it. And you know you have a sympathetic oncologist to discuss it with, which is really good!
I wish you the best of luckā¦
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I drink Rooibos (Redbush) tea which is naturally caffeine free and delicious (without milk). I gave up caffeine 20 years ago long before BC
Best wishes
I was told to expect morning stiffness but movement and a hot shower relieve that so you can get on with your day. Have you tried this? I start anastrozole on Monday and have high hopes for low se from it.
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Quite a lot of people donāt get side effects and you may well be one of them and I hope that you will be. People who donāt get side effects donāt tend to post as much as those who do because they donāt need the support / need to to vent so it can seem from reading these threads that everyone gets them - which they donāt. I personally suspect that itās more than the 1 in 10 which is what they told me though.
Movement in a morning and a hot shower - well those things may help a bit and believe me we have all tried them . But thatās very patronizing advice that youāve been given - exactly the sort of thing that seeks to minimize the problems that some people are living with.
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I appreciate some people get debilitating side effects from any of these treatments but some sail through with very little. I think the fitter you are initially the better. I am taking Anastrozole ( since 24/7/25) with very little problems - perhaps a bit of bladder weakness occasionally. I am just about to start my third brand of tablets and am nervously waiting to see if anything changes. My only problems have been with skin reactions following radiotherapy ( wearing underwired bra! ) but that is resolving now and fortunately very little sign of any fatigue. As I said - not everyone gets side effects and I am keeping my fingers crossed that they donāt appear later.
Well I personally couldnāt claim to be very fit but I donāt believe that whether you get the side effects or not has anything to do with that as Iāve heard from people who have previously been very fit who have been badly affected .
I hope you continue to have very few side effects. If there is a particular brand you react to at any point make sure that you take note of it as it was emphasized again at my support group a couple of weeks ago that the brand does make a difference . Xx
Just wanted to give an update on taking Arimidex. I did have hot flashes, night sweats (some drenching) and a general feeling of fatigue and unwellness. This all started about 3 months in. Then I developed a non-stop headache in the back of my head near my neck. I also strained my neck at the gym so I wasnāt sure exactly what was causing the headache. We were going on a trip to Europe end of August and I desperately wanted to feel well while there so I stopped taking the meds August 18. All the above mentioned issues are much better, not gone completely but definitely better. The headache is still there slightly. My neck is definitely better as well. I didnāt tell my Dr. I stopped because now that my neck is better I will try again. I can deal with hot flashes and night sweats but the non stop headaches are miserable. Waking up with one, having it all day and going to bed with it is awful. Yes, I could take ibuprofen or Tylenol but I would be adding another medication to my growing list of meds. All these so called āside effects ā are exactly the same ones I had going through menopause so, I believe itās not the meds necessarily, itās how my body reacts to having no estrogen! Am I wrong in thinking that ALL the estrogen blockers will give me the same issues?? I truly felt like I was going through menopause again and I had an absolute horrible time with it the first time. Debilitating actually. Thoughts??
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So far just hot flashes.i can handle these just wearing layers so I can peel off clothes when needed. Iām taking Claritin to combat any possible aches. Almost one month in anastrozole now.
Hi Kerry, I took tamoxifen for two years after being diagnosed with breast cancer in 2020. Tamoxifen was recommended because I have osteoporosis and Anastrazole can cause further bone thinning. In 2022 I was diagnosed with Stage 2 endometrial cancer. Tamoxifen is one of the leading causes of uterine cancer though my oncologist said that it probably didnāt cause it. My surgeon however said that they see a lot of breast cancer patients come in with a subsequent diagnosis of endometrial cancer. I wish there was a better solution out there.
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