Tamoxifen stories (to take or avoid?)

[Andi71]

Jobey68,

thank you you for your message 💕

my operation went went well and my reconstructive part is looking so good.  The recovery ‘blanket’ was something else!  Wouldn’t want to undergo that ever again, but on the positive side it did it’s job.  2 drains removed yesterday with some apprehensive tears too.  Was feeling emotionally low and yet another ‘new experience’ to get through.  My drains look good this morning, and managed to 💩 so fingers crossed I’ll get to go home today - that’s the plan.

Ms Merton,

Thank you for your post.  I’ll definately look at the Predict website to gauge my benefits etc didn’t know it existed.  You talk a lot of sense 🙂 and I am very grateful for you commenting.  How are you doing with moving on from cancer, how long ago did you finish your chemo/operation?

Wishing everyone a really good day and weekend

xx

[Ms Merton]

Hi Andi - i hope you are feeling ok now following the surgery.  As so many ladies have noted, everyone’s experience is different and just because one person does or does not get side effects with a particular drug (tamoxifen, letrozole, chemo) it doesn’t indicate how you will fare.  I understand that i might still get secondary cancer even though i am taking the tamoxifen but statistically it is reducing my chances.  To see how it might benefit you statistically, you can use the Predict website run by the NHS (predict.nhs.uk) which is suitable for use by patients.  You put in a few details about your diagnosis and it shows you the statistical benefit to you of the hormone treatment (and also chemo). You can then discuss this with your oncologist when you see her.  Unfortunately grade 3 does increase your risk of recurrence compared with ladies with a lower grade tumour but how hormonally sensitive your cancer is will also be relevant to your decision.  It sounds like you have an amazing healthy lifestyle - i wish mine was that good.  I see you take plenty of exercise, which is what everyone at the hospital has told me matters most.  Some people find complementary treatments (e.g. acupuncture, reflexology, meditation) useful in controlling any medication side effects.  Your oncologist can also prescribe certain medications to reduce side effects if required.  Also be aware that many people find the side effects reduce quite a bit after a few months.  I really wouldn’t abandon the idea of taking hormonal treatments without trying them first. Best wishes. 

[Jobey68]

Wishing you all the best for tomorrow Andi, you will soon be out the other side and back Here chatting! Xx 

[ann-m]

Hi Andi, yes, I would be interested in the aspirin query as well.

Loads of best wishes for tomorrow

ann x

[Andi71]

Hello ladies :-). It really is so lovely that your all getting involved with discussing this topic.  We undoubtedly live in different parts of the country and I do believe on top of the national guidelines when it comes to Tamoxifen, there must also be local  policies in place depending on funding, trials and who your oncologist is.  I will definitely be having a thorough chat with my oncologist and if anyone has any questions to be added to mine, please feel free to post them and I’ll ask. The more informed we are, the easier our choices will be.  I unfortunately was one of those kids who’s response to every answer was, ‘Why?’ 😁

Mai -I’ll be asking the aspirin question too!

I’ll be off line for a little bit from tonight as I’m in surgery tomorrow at 09:00am and spending a quiet night with my daughters and partner.  I wish you all a lovely evening and look forward to catching up with you post op 🍾

x

[Mai7]

Ann, that's exactly my thoughts, as Tamoxifen increases the risk of thrombosis/clots low dose aspirin should counterbalance that. If it reduces recurrence risk too that's a bonus!  As long as you stick with the low dose 75mg then it shouldn't affect your stomach. Regular high doses of aspirin can cause irritation (and possibly bleeding) in the stomach.  Another one to look out for is Loratadine antihistamine which is being researched for recurrence risk reduction but also reduces bone pain whilst on chemo or Tamoxifen.  These are all safe add-Ons. I always check out possible interactions on drugs.com.  My Oncologist was non-commital about low dose aspirin and invited me to take part in the clinical trial.  I guess they can't commit until the results of the trial are known. Nikki. Xx

[ann-m]

Also, thanks for the links, Mai. I did ask the oncologist about aspirin & he checked whether I was legible for the ‘add aspirin’ trial, which I wasn’t, but never mind!
He was fairly non commital about it.
However, I will consider whether to do it. In view of the slightly increased blood clothing risk, it does make sense anyway.
ann x

[ann-m]

Google is a wonderful thing, Mai!
For me, I avoided google like the plague when I was first diagnosed as I didn’t want to scare myself & in hindsight, I’m glad I did. The only downside was, I did not find the forum until after surgery & final results, although I do remember the bcn recommending it.
But, as things settled down, when I knew where I was with it all, then I became curious & was quite happy to google anything bc related, so here I am!

Andi,
I certainly found the app a good place to start, as you can go at your own pace. For me, I have found it great to use, especially as my job involves a lot of driving & getting in & out of the car. I rarely get back pain now & flexibility is much better.
ann x

[Mai7]

Ive downloaded the Yoga Studio, thanks for sharing Ann.

heres an interesting article about Tamoxifen and vitamin D

http://www.breastcancer.org/research-news/20130520

And another on which suggests low dose aspirin increases the effectiveness of Tamoxifen:

https://www.medicalnewstoday.com/articles/259480.php

I know we try and stay of the Google but if there is anything positive and harmless to share then I'm all for it!

[Charys]

You are welcome Andi, I think you have a fantastic attitude too and honestly....it's so refreshing that someone really wants to hear opinions with openness. Would be really interested to hear how your oncologist chat goes. X

[Andi71]

Jo - I like your positivity, it’s the only way to be.  Here’s to you getting out the pool by yourself this year! 💪🏼🤸🏻‍♂️

x

[Jobey68]

Thank you Andi, I'm always happy to share my experience as I know how helpful I found hearing from others when I was first diagnosed . 

 I was told a few months should be enough to start seeing any improvement, I've got arthritis now which I may have been heading for anyway but I've no doubt it was accelerated by Tamoxifen , Im now on other mediation for this and hope that things will ease in time.

Its weighing up the pros and cons but it's not an easy decision to make, my husband was adamant I wasn't stopping Tamoxifen until we were on holiday last summer and he saw properly how bad things had gotten when he had to lift me out of the pool! 🙈

Its not all bad, I have a great life and appreciate everything I have so much more now Xx Jo 

[Andi71]

Hi Charys,

Ive had a read of the link - many thanks 🙂

I’m looking forward to having a chat with my oncologist at the end of January.  Thankfully I know her personally from work and she knows I’ll be full of questions! You have been so incredibly helpful and I’m pleased you have posted. 

x

[Andi71]

Mai - well done on getting yourself accepted for a clinical trial 👏🏼 I’ve had a look at the link.  I didn’t have any node involvement so unfortunately I wouldn’t fit the criteria.  You must let us know how you get on.

x

[Andi71]

Mai - Thank you for update on vitamin D.  I must say I know it’s good for mood and we could all do with a little lift no matter how small 🌞 Another yoga bod!! 🤸🏻‍♂️ We’ll have to exchange how we are getting on.  Getting up off the floor from sitting on it is my first hurdle.  I’m amazed at how out of shape I have got from having chemo, it really doesn’t pay to be inactive.  I certainly won’t rule out trying Tamoxifen, if it renders me in pain then I’d stop.

x

[Andi71]

Jo - Thank you for posting 🙂 Not only are you helping me, but lots of other ladies too.  I’m so sorry to hear you lost your mum. Life is so cruel at times.  It would be good if we had earlier diagnosis  for cancer, it seems GP’s are all too quick to think it’s something else instead.

I’m sorry to hear that your break from Tamoxifen hasn’t improved the side effects it gave you.  Did your oncologist indicate how long off it you would see benefits to your joints?  I know That some drugs can stay in your body a long time and others don’t.  I agree with you in that we all need to be at ease with our choices and I hope that moving forward that your symptoms do not get any worse 💕

Thank you very much for sharing.

x

[Andi71]

Hi Ann,

Thank you for the yoga app info, it’s good to know of one that’s been recommended and liked.  I certainly won’t be popping into a yoga studio with my limited range of mobility at the minute!  So many people I know do yoga and all I ever hear is positive feedback.  I want to be subtle and not have aches and pains moving forward.  Here’s to me doing yoga post operation 🤸🏻‍♂️

x

[Mai7]

Im also looking to start this clinical trial soon.  Got my first appointment 16th Jan after being initially accepted:

https://clinicaltrials.gov/ct2/show/NCT03155997

[Mai7]

Andi, my Oncologist was fine about me taking vitamin D and my GP said most people in this country are deficient in vitamin D (lack of sunshine) so always a good supplement to take.  I also plan to take up Yoga when I've finished and recovered from radiotherapy!  I agree with others, try Tamoxifen and see how you get on with it. If quality of life on it is poorer than risk of metasteses then you could have a rethink! Xx

[Jobey68]

Hi Andi, i would say why not give it a go and see how it works for you? The list of side effects are pretty impressive I agree and yes some ladies do have severe reactions to it but the majority don't and you would be extremely unfortunate to get them all!

I started on in April 2015 and did without hesitation , I was just so grateful to have something going forward that would help me keep this bugger at bay that I questioned nothing!  I do know all too well it's not a miracle drug , my own mum died from breast cancer inspite of being on Tamoxifen for 5 years but when she sought help her cancer was very well established which had lessened her chances of a good outcome but it still helped keep it at bay and give her some more good years. 

My own experience with it was nothing much to report to start with,  a few flushes, tiredness and general aches and pains initially , I got to over 2 years before it started to effect my knees to the point I could barely walk a few yards without pain so I was forced to take a break which im 3 months in to now with little improvement so I'm contemplating going back on it, it gives me an extra 1% protection against reacurrance according to the NHS predict website , nothing much in the grand scheme but it still niggles away at me all the same! 

We all have to live with the what ifs, would be lovely if we could be given a 100% reassurance that we were cured for ever, the important thing is to be at ease with your decision Xx Jo 

[ann-m]

Hi Andi,

In case you’re interested, I use the Yoga Studio app below, it has a range of classes for all levels & is well explained & demonstrated. It also includes meditation as well. 

Yoga Studio

ann x

[Andi71]

Mai - Hello lovey I hope you are doing really well 💕 I’ve no idea about my ER+ level, only that I am ER+, so will ask at my next oncology appointment. Thank you for posting! 

My lifestyle change is going to be to take up yoga.  I have a very busy mind so it’ll be a mini challenge to calm it down.  I don’t drink or smoke and have a really good diet.  Maybe I need to stress less over the small stuff too 🙂 With the vitamin D - did your oncologist say it was ok to start taking it?

x

[Charys]

I think the oncology consultant would be horrified to hear that the lymph nurse said that to be honest. It IS hard, however, the bottom line is that tamoxifen doesn't cause recurrence or secondaries.... (certainly theres no evidence to that effect) and tamoxifen does help (as Ann's post listed) a percentage of women. I feel a bit of  a fraud as I didn't carry on with it though Its good to question and take an active part in your treatment Andi, all credit to you for that.

[Andi71]

Ann,

thank you you so much for your reply. I’m chuffed that Tamoxifen is being kind to you as much as it can be! And what’s lovely is that we have a couple of very positive posts to help reassure other ladies who are in the same position as me, as far as not having started it yet, but who have a ton of questions!! I. Hopefully more positive posts will be added.  I guess it’s that every step along this road I’ve been on with having been diagnosed with bc,  I’ve had decisions to make, like yourselves, and we all just want to make the right choices.  The more information we have, the easier our choices will be.

Eternally grateful ladies! 💕

[Andi71]

Charys - Thank you lovey for the link and what you’ve said.  It’s a toughly eh?! I guess hearing your stories on here will help me decide what to do.  I too thought it irresponsible what the lymphodema nurse said - it’s what’s put me in this place of confusion, as if we don’t have enough going on in our minds.

[Mai7]

Hi Andi, I agree with Charys that you will generally see negative reports on here as people who are having difficulty are more likely to post than those who are doing fine.  I'm 48 and have been on Tamoxifen for about 7 weeks.  At first my throat was quite dry and my legs and hips seem a bit stiff but tbh as I'm only 3 months post chemo it could still be the chemo SEs causing the aches.  It isn't bad enough for me to discontinue taking it though and I haven't suffered with hot flushes..  I've also read the USA seem to prefer aromatase inhibitors to Tamoxifen. The stats I've seem commonly seem to suggest that Tamoxifen can reduce recurrence by 30% whereas AIs give 40% reduced risk.  You have to be post-menopausal for AIs though.  It certainly isn't a magic pill as, like others have said, there are many women on it who get recurrence or secondaries.  So it seems to work for some but not all.  My BC nurse suggested it works best on those who are the highest ER+.  As I'm 8/8 ER+ I fall into the category of people who should benefit the most but only time will tell.  I've also quit alcohol and dairy to reduce toxic oestrogen load and take vitamin D, DIM supplements and regularly put flaxseed on cereal as well as generally eating a healthy diet of fresh fruit and veg and whole grain foods.  I feel I'm doing everything I possibly can and that's enough for me!  Basically, I follow a lot of Jane Plant et al advice.

[ann-m]

Hi Andi,

Well, I’m another one whose fine on tamoxifen & having no more symptoms than being menopausal anyway, such as hot flushes, some minor hair thinning which isn’t noticeable, in fact my hair is now softer & easier to style & some increase in minor cramping when doing yoga practice. 

It is so difficult to say what can happen with recurrance, but I have read that tamoxifen does significantly reduce the risk, by about 30-50% & with risk of recurrance of about 10-40%, I would certainly want to reduce those odds by up to a half taking it. Unfortunately, I can’t find the article I read on this, otherwise, I would put in the link.

Also, please bear in mind hormone treatment is highly effective in treating recurrance, should it occur. In any event, statistically, most of us will be fine.

Inevitably, those having problems will report it, not those who are ok on it, so there is a reporting bias. I remember feeling very anxious before starting it & my anxiety was not helped by reading others experiences here. 

As ever, see how you get on, it may well be fine anyway, but if not, then you will be able deal with it then.  

Wishing you well with it all, 

ann x

Thanks for the link, Charys🙂

[Charys]

I think thats irresponsible of the nurse to say that to you to be honest. All statistical evidence points to a reduction in recurrence, but that is large scale statisticacl of course - and within that for some it won't work and for some it will. Due to that statistical evidence, in the UK and the US....the length of time for taking it has been increased to 10 years. As you brought up the US....(March 2013)...

https://www.cancer.gov/types/breast/research/10-years-tamoxifen

Of course, any treatment is always your choice and in any treatment the potential benefits and gains need to be weighed up in your choices.

However, you know what - if you take tamoxifen,  you will never know if tamoxifen worked for you and you didn't get a recurrence because of it, or if you were just never going to get a recurrence. OR if you don't take tamoxifen, if you were unlucky enough in the future to get a recurrence; you will never know if you would have had it anyway. This is getting confusing, but I think you get the point. There will be recurrences or no recurrences for a number of people, taking tamoxifen isn't a guarantee in either direction but statistically there is no doubt it makes a difference to a number of women. Its the lack of guarantees that makes things hard I think, and you will never know if or if it doesn't make a difference to you personally.

[Andi71]

Hi Charys,

I totally get what you are saying and I agree, that unless you try something you’ll never know.  I am totally grateful for your comments!! However, I’m looking to be convinced that women who have taken Tamoxifen for years are still cancer free.  Unfortunately I had a very honest chat with a lymphodema nurse about Tamoxifen and she said she was surprised at how many women she has seem who have been on it and get secondary cancer. It just got me thinking .... is it worth it!  Also it seems across the pond in America that they are not big fans of it...... more confusion! 

[Andi71]

Ladybowler -  Thank you for your history to date on T 😀 It’s good that apart from the daily hot flushes that it has been kinder to you than a few other ladies on other threads.  Unlike you, I am peri- menopausal, I wonder how much that makes a difference?! I am usually very active, play golf, walking and do weights etc, I guess I’m concerned about joint pains etc which some people have and the weight gain amongst other nasties. 

Unfortunately, on the secondary cancer threads there are women who have been on Tamoxifen for years and still went on to get secondary cancer after having breast cancer.  The mind boggles and it’s baffling to know what to do.  Are lifestyle changes what keep cancer at bay and being less stressed.

Could it be that our initial treatment for bc that determines our outcome years down the line?   Does our initial treatment 100% cure our cancer or is it always just dormant and will reappear in all of us at different times of our lives irrespective of taking Tamoxifen or not? Is it our grade of cancer or type of cancer that brings it back?  I certainly don’t wish to scare or worry anyone by talking about Tamoxifen in this way, but it begs the question, what are we taking it for if cancer is coming back in women who take it?

[Charys]

Hi Andi,

Here's the thing about Tamoxifen, that I've gleaned from the time I've been on here. Some people have life quality changing bad side effects (and stop taking it), some have no side effects at all and hardly even know they are on it. For some there are a few side effects which stay with them but they are manageable and for some the side effects disappear over time. However, there is no way of knowing if you will be one of the 'lucky ones' or not without actually trying it out.

There are quite a few tamoxifen threads on here, if you do a quick search you will find many still active which might give you other opinions (in addition to anything added here), but bear in mind every single person reacts differently to it and just because one person has problems doesn't mean you will. Also, bear in mind that often people post on forums because they are having problems, and so it becomes a self-selecting group of negative stories.

I personally can't see why not simply try it - and stop it later if you feel you want/need to, or deal with any side effects IF they do occur. I have my own, unfortunately, negative story about tamoxifen, which I'm not going to detail here as it was rather out of the ordinary and I don't want to colour people's views.....BUT I did start it and give it time to see how it went for me. I no longer take it (I was 48 yrs at diagnosis). I wish however that I had been able to continue with it There are plenty around who have unpleasant stories, and plenty who have stories of positivity (they will be along shortly ), but I'm not sure if they will help with a decision ultimately as your body is your body and how you respond is an unknown right now.

I can entirely see why you feel unsure and confused, it is a common feeling which I held myself and others have expressed. Have they offered that you start before surgery?

Charys x

[ladybowler]

Andi

I am 59, was diagnosed in 2016 and finished active treatment in January last year.  I have been on tamoxifen for 14 months now.  Apart from a lovely hot flush about an hour and a half after I take it in the morning, and several smaller ones throughout the day I dont think I have any significant side effects from taking it, and certainly not enough to make me think that I will not take it any more, it is hopefully keeping me safe froma recurrence.  When I first started taking it I had a couple of weeks of feeling very sensitive and would cry if someone even said something nice to me but that passed.  I dont know if because I am post menopausal that I have been ok on it so far.  I am on it for 10 years.

[Andi71]

I would like to hear any (positive or negative) stories about how Tamoxifen has affected you since starting it. So far I’m reluctant to begin taking Tamoxifen due to the debilitating side effects women experience. Hopefully everyone will gain a better knowledge and understanding of this drug by sharing their experiences.
I have invasive Grade 3 DCIS, HER2+ I have had chemotherapy FEC + PTH, with mastectomy and DIEP reconstructive surgery on 9/1/18. I am 46.
Feeling very confused?!! ...