Opting to stop Hormone Therapy

[Tez]

Just to say It's not easy.... Your post has inspired me to write something (new to the forum) .. I'm 3 months in with hormone treatment of Zoladex injections and anastrozole and having major problems/side effects, to the point of wanting to stop treatment and hope for the best. For me it's all about healthy life style and trying to lead a less stressful life .....these things too are major contributors in recovering from BC. Which don't get recognised that often!  Good luck to all!!! 😃

[riversidedawn]

Hi everyone, I also suffered terrible side effects with tamoxifen- flushes, depression, insomnia, weight gain. I came off it for a break and felt much better, within a week of starting it again the depression hit really hard and my family all agreed it was bad.

Onc put me on anastrazole and zolodex. Flushes became intolerable- instead of 3-4 every hour 24/7 they reduced in number but became drenching sweats like I'd run a marathon or got caught in heavy rain!

I too discussed with onc and gynea having ovaries removed but they said it wouldn't guarantee a cure for the sweats as it too plummets you into menopause so likely to have all the same side effects.

Having discussed with onc and my family I came off hormone therapy a year ago. Flushes are much better (still get them) and mood is back to normal (with help from antidepressants).

I still have multiple joint pain especially feet wrists and elbows. Suffered from back and wrist pain for 30+ years anyway.

The best antidote for pain for me is keeping active. I walk the dogs, run around with kids, do yoga and aquarobics which all help. Can't do the high impact exercise or weight training that I did pre-cancer but have found alternatives. Unfortunately I'm struggling to shift the 2 stone I've put on over the last 3 years!

Getting back to work a year after finishing treatment (made redundant during chem!) also helps depression as feel that I am contributing once again.

Good luck with your decisions, it's a tough one but quality of life is so important xx

[Clair G]

Busybee43 I know what you mean about thinking you are imagining it, I've had so many side effects I swear the doctors must think I'm making it up! Sounds like you are kind of getting to the end of the road like I was. I have been struggling to work and keep up with my very active step sons, everything feels like a chore as it's so hard. I was told to try Glucosamine and chondroitin supplements, I've taken them for about a month, haven't seen any difference yet but I may not have been on them for long enough. I find heat really good, hot baths and I have a heated cushion that I put in whatever hurts the most. But haven't found anything that helps the stiffness and restricted movements. Meri, thanks for the tips will try the heat patches. I have an amazing remedial massage therapist, I honestly don't know where I would be without her, she quite literally keeps my body functioning!

[Meri]

After speaking to Breast care nurse and doctor at hospital yesterday I have now stopped Letrozole due to joint pain and tiredness.

I have bone and nerve pain due to an old spine injury but this drug has made the joint pain worse wth muscle cramps.

Re ideas to help ease such pain, as someone who has managed chronic pain for years here are some ideas

Glucosamine with MSN does help but takes couple months to kick in.

Arnica gel can ease muscle and joint pain. I buy mine from QVC, from SBC range as cheaper and does extra strong one too 🙂

Microvable gel heat pads, or stick on ones can relax muscles and distract from constant aches, the stick on ones great if you working.

Hot water bottle at night.

Pillow under or between knees can ease leg pain.

TENs machine can distract from pain signals. Can get free from Pain clinic or buy online or at Boots.

Marjarom essential oil, mixed with a base oil eases pain.

Massage is wonderful 🙂

But even with these, and string pain killers I cannot manage the increase in pain Letrozole has given me.

 🙂

.

[Busybee43]

Hi Clair G, after reading your comments about Zoladex Injections and anastrazole I feel a bit relieved as I thought it was all in my head!
I was diagnosed with grade 3 bc in January, had 3 operations to create a clear margin, had 5 weeks of radiotherapy and finally the end of June I started my hormone therapy.....zoladex sub cut injections monthly and anastrazole tablet every day.
From mid July I have suffered with insomnia, waking up 3 and 4 times a night and struggling to get back off to sleep, the sweats have started but I seem to be coping with them after getting some red clover supplements from Holland and Barrett. My worst side effect that I am experiencing now is severe joint pain in my elbows, forearms, wrists and hands (I'm a hairdresser and so I use my hands alot with scissors, brushes and hair-dryers)!! I have purchased joint care supplements and I'm eating sardines, mackerel and oily fish almost every day but the pain when I pick anything up or even when I lie in bed they are very hot and they actually click now!!
So after reading a few comments regarding zoladex and anastrazole and joint problems and sleep problems I don't feel as though I'm imagining it now, I was worried I was getting arthritis!! I can't take tamoxifen as I have a history of blood clots, I have left a message with the bc nurses to ask if I could change medication as I can't do my job, or enjoy anything with my children. I'm waiting for an mri on my ovaries as I have had endometriosis for several years and I've been suffering in pain with the possibility of cysts so need to see what my gynee says.
Are there any other supplements or anything else to take for severe joint pain or sleep problems....I have aged massively in the last 7 months.

[Pollyp]

Hi all.im on the tightrope of do I stop or not or also i am considering a break to see how things go. Does anyone know how long it takes for tamoxifen to leave your system? I'm wondering how long a break is sensible to cleanse system and review changes.

[Clair G]

I have now seen my oncologist and he has agreed to let me stop hormone therapy, although not ideal, as I've only had 18mths of treatment. The risk increase is around 5% for me with no treatment at all. As I've had 18mths and the last 7mths my ovary function has been shut down and will take around 6mths to recover, I can say I've in theory had 2yrs of hormone therapy which reduces the risk down to 2-3%. This isn't enough of a risk for me to continue trying to push through all the horrendous side effects. It's definitely time for me to claim my life back. Although I have to say, I thought I would feel relief, like a huge weight had been lifted, but I don't and not sure why. Don't feel particularly anxious, I feel confident that I've made the right decision for me. Going to have bloods done in 6mths time so my oncologist can see what my hormones are doing, until then, onwards and upwards! xx

[whitelily]

Hi Dizzybee a bulky uterus was picked up on a CT scan I had to have following surgery. I was told to stop taking tamoxifen as there was no evidence of a bulky uterus on my previous CT scan 6 months before so they said it is a side effect of the drug. I then had an ultrasound scan which showed a thickened lining and was told that they would do a scan yearly but that because I had now stopped the tamoxifen hopefully it would settle. That was in February this year. In June I had some spotting and slight blood loss so then had to have another ultrasound and hysteroscopy where they also took some biopsies. The bleeding then settled and biopsies came back as normal. I guess now they will review me next year and probably do another scan. As you say I am hopeful that the 4 years on tamoxifen had some benefit but I know a lot of the current advice is to take it for 10 years.. I am not currently taking anything as I then had awful side effects on anastrosole. I guess just make sure if you have any spotting or bleeding to report it straight away and get it investigated x

[Dizzybee]

Hi whitelily

Do you mind if I ask a bit more about what happened to you on Tamoxifen? I had endometrial hyperplasia (abnormal thickening of the lining of the womb) and a polyp before I started Tamoxifen, and the gyne consultant told me that Tamoxifen was likely to make it worse, I have to have an annual endometrial scan to check what's going on. I'm still taking it and hoping for the best, but may well be in the same position as you.

They say that even if you don't take it for the full five years you still get most of the benefit, so you've probably got most of the benefit for the four years that you took it anyway.

[whitelily]

Hi ladies I had been on tamoxifen for 4 years but had to discontinue in February due to the side effect of a thickened womb lining. I was then encouraged to try anastrasole which I did reluctantly. After 12 days the side effects were unbearable and I stopped taking them. I still have joint pain and cramps 6 months later which are now gradually subsiding. Pretty bad reaction considering I only took it for 12 days six months ago! I now actually sleep which I never linked to tamoxifen or anastrosole but the insomnia was very evident with that. Two sites worth looking at are canceractive.com and marnieclark.com both have up to date research and can help in providing information about how diet and supplements can help if opting to stop taking hormone therapy. I am not taking anything now and feel much better for it x

[Meri]

I do think if we have other health issues prior to BC drugs can have intense effect.

I have found process so hard, I have spine injury, loads arthritus, damge to nerves, chronic nerve pain.

Finding drugs just make me feel awlful.

on Letrozole feel so tired and achy, immediatley spine pain increased, maybe due to weak bones in that region already I don't know.

Re NHS Predict its is useful yet just one aide to making a decision.

Its worth talking to oncologist again, and or nurses but in the end its your life and you know what you can manage or not.

For me I know I must try but not end of world if I stop as only 2% increase in survival at ten years.

Its anxiety that making me feel I should stay on it, but then I am anxious about side effects am experiencing.

So hard for us all 🙂

[Clair G]

Thanks Meri, I hadn't heard of NHS Predict. I have had a look. If I'm reading it right to complete hormone therapy would reduce my risk by 2% for 5yrs and 5% for 10yrs. Just need to work out if that's an acceptable level of risk I guess

[Jill1998]

Yes ,having ME def makes your system more sensative ,so more likely to suffer side side effects from medications .Hard choices but one lots of us are having to make - not on your own with that one!!!

[tiswasis]

Thanks, I just did and it barely makes a difference after 5 yrs...I think I'll try again in a few days and if the results are the same, I'll take my chance. So sorry you too have M.E.but it's good to hear from someone who understands x

[Jill1998]

Hi T ,welcome to the forum .I had ME too for many years and it can make you even more sensitive to medications /side effects .Very hard to decide what to do ,but like Meri has said maybe look at the stats on NHS predict and see what percentage gain you are likely to get and balance it against how bad you are feeling .Hard decisions.Best wishes .Jill.

[tiswasis]

Hi, I'm new to the forum so Hopefully I'm in the right place ...

I had a lumpectomy in December 2016 and the surgeon was pretty sure he had all the margins.  I was lucky it was found so early.

What is complicating everything is that I have had M.E.and fibromyalgia for 35 yrs ( I'm now 66)  I already have severely limited life and am in a lot of pain.  I declined radiotherapy with my family's blessing as they understood I was simply too ill to travel 40 miles every day and that was before I even started the radiotherapy.

I started on letrozole but after 3 months I had to come off as I barely slept - some nights, not at all.  It was having a significant effect on my M.E. I felt so ill... After a 2 week break and speaking to the Breast Cancer nurse I started on tamoxifen. I slept slightly better but still not great. The worst problem up to recently was severe joint pains especially in hands and knees which crunch as I walk. I look and feel like an 80+ yr. old ...

However the last few weeks and after 4 months on Tamoxifen I have really struggled with the darkest moods which seem totally outside of my control.  Though I've been unwell a long time, I have never suffered from depression. There is nothing in my life that would be causing that and in general I don't suffer from anxiety...I really felt without hope.

Last week I decided I needed a break to see if it made a difference - and already after 5 days it has,  a huge difference! I am so tempted not to restart...am I being naive or pragmatic??

[Meri]

I too am in same position, there is an online tool oncologists and patients can use to help your decision.

Its called NHS PREDICT

You fill in a few details anout your cancer and treatments then it tells you how much hormone theapy helps your odds of survival in five years and ten years.

Mine is only 2% so not willing to live with bad side effects.

I am curently on Letrozole, tried Tamoxifen but had severe nausea and allergic reaction.

I already have spine and joint pain, now more achy and tired but early days.

Hope this helps

🙂

[Jill1998]

Hi Clair,I just wanted to say that there are a lot of ladies who after a lot of thought decide to stop the meds because of the way they affect their quality of life .Its a very personal choice .You have tried for 2 yrs and I think given what you have put up with that's amazing.A lot of people won't broadcast the fact that they've stopped as they feel guilty about it .Good luck !!Jill.

[Sue C]

Maybe its not that dramatic if it helps you so much. I hope you get some positive advice next week. Let us know how you get on xx

[Clair G]

I too found the gcsf injections pretty horrendous. The bad pain after the injections seem to last between 2-4 days although the last one took 7 days 😬 Then I just have a bareable amount of joint pain. Then usually the days leading up to the injection being due I go downhill again. so half the month is pretty bad, hence why I'm at the point where I don't feel I can continue. My cancer was very hormone receptive so my oncologist has tried to encourage me to persevere. Friends and family feel that ovary removal is a drastic measure but given my awful experience I don't think it is!

[Sue C]

Oh Clair, that must be so hard. I had that pain with the gcsf injections during chemo. My back has never been great and it seemed to attack that weak area. Must be similar with your hip. Does the pain subside during the month? You must dread that time😢 xx

[Clair G]

Thanks Sue. Just after the injection my hips, shoulders and lower back are so bad I sometimes don't know what to do with myself! I've also had a lifelong hip problem so I need to stay active otherwise my hip goes downhill shortly followed my the rest of my body as I end up walking so badly! It's been a nightmare, I've found hormone therapy so much tougher than surgery and chemo, even the year of herceptin injections! Now that's bad!!

[Sue C]

Hi Clair
I'm not in the same position as you, but I wanted to acknowledge your post and say I'm sure there will be some ladies along soon that can help.
I'm on zoladex and letrozole, and find the achy joints a challenge, that's for sure. But it is not bad enough to consider stopping.
Only you can really decide what is best. Quality of life is so important xx

[Clair G]

Following moan treatment I have been on hormone therapy for around 2yrs. Initially I started with Tamoxifen as pre menopause. After developing severe neuropathy in my hands and feet and discovering it was linked to the Tamoxifen I came off it. I had a 6mth break and during this time my neuropathy dramatically improved. Oncologist then started me on Zoladex and Anastrozole around 7mths ago. I suffered severe headaches and joint/muscle pain which have been debilitating. 1 month ago my oncologist changed my anastrozole to exemestane but after only a few weeks my neuropathy symptoms became debilitating once again.

I feel like I've reached the end of the road with hormone therapy now, my quality of life is so severely effected by it that I think I would rather take my chances of not having it. I've arranged an appointment with my oncologist next week to discuss the increased risk and the option of ovary removal. Was hoping there are some others out there that have also opted against treatment due to side effects. So hard to know if it's the right decision but I know I can't continue this way, the impact on my life is huge