Side effects and sympathy please!

Hi all,

I haven’t posted on here for over a year but I’m after some sympathy, to be honest!!!

I’m two and a bit years post-lumpectomy, have been on Tamoxifen since March 2020 and will be 53 in August.

Since January, I have put on a ton of weight - about a stone and a half - without really eating anything different. I feel bloated and uncomfortable. I suffer from night sweats and hot flushes in the day (usually every two hours!) and have horrendous joint pain and muscle aches, particularly in my lower back. I feel stiff and immobile first thing in the morning, am constantly thirsty and then always needing the loo. Then with some form of stress incontinence, I have to make sure my bladder is empty! 
I’m feeling old, tired, creaky and have developed very dry skin recently.

Is this the effect of Tamoxifen? Symptoms of menopause? Would love to hear from any lovely ladies who are suffering the same (in fact, worse!) so I know I’m not alone in this. 
It’s not getting me down. I just wish I knew when it would end and I can go back to my usual self!!! 

Hi

It does all sound rather menopausey to me. I’ll ask the obvious questions - have you rung your breast care nurse for any advice? They are there for us indefinitely. And have you tried different brands? I had problems with anastrozole and it was amazing what different brands were like, even if pharmacists say it’s not possible. There’s a lot of anecdotal evidence. From the back of my mind, the brands Teva and Accord seemed most popular. If you find you’re better on one than the other, your GP can then specify it on your prescription.

As regards the weight etc, it sounds about right for hormone treatment. I had never reached 8 stone in my life and I shot up to 9 and a half. I just can’t get used to the loss of my concave belly and the struggle to find clothes that fit - and I’m not even on the HT now. Some of these problems will improve over time but the fact is, this IS you. We have to adapt to changes with menopause anyway (so long ago I’ve forgotten about it) but very few sail out the other side of cancer treatment or menopause feeling like their ‘usual self’. It’s a luxury we lose with diagnosis.

There are things you can do to help alleviate some of the aches and pains - glucosamine, turmeric, omega-3 (make sure it’s DPA EPA DPA or your wasting your money) - and sex is very helpful in keeping everything working as well as possible (that’s if you can even contemplate it; some HT causes anorgasmia so that healthy route is scuppered). A sympathetic doctor may be able to help with things like the stress incontinence and there are treatments like Replens MD that can be prescribed for vaginal dryness which can then cause UTIs, but sadly the HRT route is not for you so it’s a case of trial and error. Exercise if course is essential and energising.

The ageing process is not always comfortable and is harder when you are denied remedies others take for granted but you have to be careful for the rest of your life. Don’t write yourself off; you’re a mere youngster compared to me! And there IS life after breast cancer. It’s just that you see it in a different way after what you’ve been through. Think of it as a new you rather than hankering after a usual you that has been through the mill, come out the other side and has had to adapt?

Just a few thoughts from an old lady xx

Hi Savvyshopper

I am so sorry to read of your health problems. I am presuming you have discussed these symptoms with your GP and he/she has ran blood tests to ensure that the thirst and the urination are not something other than Menopausal/Hormone Treatment related?

Have you tried taking your Tamoxifen last thing at night so that any hot flushes/sweats are at night? There are cold pads you can buy on line to lie on top of or put on your pillow which may help, consider using cotton sheets and blankets so that layers can easily be peeled off at night.   Diet changes from carbohydrates to protein based meals, cutting Gluten completely out certainly helped me with bloating. Hopefully if you can reduce the bloating and lose weight your back and joints will be less painful.

Be kind to yourself, set yourself small physical challenges to help yourself get a little fitter, short walks, swimming? Anything to get you moving and motivated again. You are already taking a positive step forward by posting on here, as others understand and can offer support. Take care (((hug)))

Silver6

Hiya, I’ve only just joined the forum and saw your post.  I am on letrozole, but you could be a reflection of me!  I had breast cancer last year, but it’s gone now.  I’m a bit older than you, 58, but my joints hurt all the time, the hot flushes are a nightmare, and whereas I used to be a bit of a gym bunny and walk everywhere, I’m making excuses to get a lift!  I just can’t seem to get my fitness back.  I look ok, just a bit plumper! - so everyone seems to have forgotten I’ve been ill.  Some days I can’t seen an end to all the side effects but on the whole though, I can’t complain, because I don’t have cancer anymore and life is good.