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Tamoxifen

33 REPLIES 33
martj
Member

Re: Tamoxifen - low-dose

Hi all,

I continue to manage my battle to keep cancer at bay with healthy eating and lifestyle. 

It may come back and I think that is a fear we will all live with, whatever our choice of treatment. 

All I can say is, do your research, and choose what is right for you.

After surgery and my histology results, I chose to reject radiotherapy and tamoxifen, that was the right choice for me and my life. You need to be at peace with your decision so you can live a happy life post cancer 

Hugs 

Martj

Martina
Member

Re: Tamoxifen - low-dose

I hope the histology results are the best possible and the recurrence was caught early. I would be interested to know how it all goes if you feel like updating me.

I had a lobular carcinoma removed by surgery then the five-day radiotherapy last year, then I was prescribed five years on Tamoxifen. I will get a yearly mammogram for five years BUT I understand MRI is much more accurate with lobular BC than with ductal BC and that a recurrence is likelier at say ten or fifteen years than in the first five years. So... I think some other kind of monitoring will be needed.

trudy2010
Member

Re: Tamoxifen - low-dose

I am awaiting histology results from my surgery, then i will know the next plan, It's definitely radiotherapy but anything else, I dont know yet.

I would definitely go back on tamoxifen if it was an option, i am still pre-menopausal.

Martina
Member

Re: Tamoxifen - low-dose

Hi Trudy

Thank you for your reply.

Yes 20mg daily is the standard dose. But there are some early studies comparing the efficacy of 5mg daily including one that showed it to be equally effective in a certain group of patients, with both doses reducing recurrence by 50%.

I'm sorry to hear you have a recurrence in the other breast and I completely sympathise with the frustrating lack of explanation. I had so many unanswered questions which included things that were unknowable in the current state of research as it turned out.

Your immediate question sounds a very good one and so I wonder what treatment you are now having for that and whether Tamoxifen will form part of it?

Martina

 

 

 

trudy2010
Member

Re: Tamoxifen - low-dose

Martina,

I had tamoxifen 20 mg daily for 5 years . I had very few side effects except for hot flushes. 

I thought 20 mg was the normal dose .

I stopped it at 5 years with "permission" from my GP and oncologist as I began to get numb and tingly hands, this resolved almost immediately I stopped it. I must admit, I felt that once I'd hit 5 years, I was done and dusted and treated completely.

However I wish I'd had a bit more counselling or information about the benefits of carrying it on for longer than 5 years, as I now have a recurrence in other breast ( 6 years after I stopped it). I know this can never be proven to be caused by stopping tamoxifen but it's always in the back of my mind.

All the best 

Trudy

Martina
Member

Re: Tamoxifen - low-dose

 I was prescribed 20mg daily Tamoxifen and have decided for several reasons to take it at a reduced dose. I would be interested to hear from anyone else who might be considering or already doing this.

linde
Member

Re: Tamoxifen

I everyone, I also had a 3% benefit from tamoxifen (using NHS predict).

I'm 35 so taking tamoxifen was a big decision as I wanted to start a family. In the end I decided to take tamoxifen for 2 years, take a break to try to get pregnant and then continue for 8 years.

The reason I chose to take it, is the 3% is just the survival rate for 15 years. When I found out Tamoxifen cuts recurrence and secondaries in half when taken for 10 years (the ATLAS study) it seems worth it.

Thats how I made my choice anyway. I'm in week 2 so long way to go!!!

martj
Member

Re: Tamoxifen

I don't think that worry will ever go away, but would it by taking tamoxifen??

I think changing my lifestyle and the foods that I eat can only have a positive benefit for my health all round preventing other illnesses as awell as cancer. 

Take care xx

Shana72
Member

Re: Tamoxifen

Hi,

I was also advised that it would be of little benefit to me, so I decided not to take it. This was following a DCIS diagnosis, 2 lumpectomies and a course of radiotherapy. I still wonder if it was the right decision as I am ER / PR 8/8+

KimFiva
Member

Re: Tamoxifen

Hi EMA55,

Sorry. I don't know why I thought that you were on tamoxifen for longer that me. Thank you for your reply.

Have a nice week.

Kim

EMA55
Member

Re: Tamoxifen

Hi Kim

I've been on Tamoxifen for nearly 3 months. Thanks for recommendation re the pad. It's odd but my head doesn't get hot, it's my back, arms, hands and back of legs. My back drips and my palms sweat - sometimes every 60 mins. I'm getting used to it...

Take care.

EMA55

martj
Member

Re: Tamoxifen

Hi everyone, 

With only a 3% benefit from taking tamoxifen I decided to not take it and I'm getting the benefits from changing the food I eat and drink and positive adjustments to my lifestyle. 

I am glad to hear your side effects arent treating you to badly. 

Take it easy 

 

 

KimFiva
Member

Re: Tamoxifen

Hi EMA55,

Do you mind if I ask how long you're taking tamoxifen for? I've been taking it for 18 months and now it has messed up with my period. I'm a bit worried about it.

I saw your complaint about hot flushes and I thought of suggesting you a pad I've bought a few days ago. It has a coolant gel to keep the head 'cool'. I'm in my 30's so I bought it for migraine (and I'm finally sleeping well again), but I saw loads of reviews from people suffering from hot flushes and most of them were happy with the results.

Wish you a good weekend,

Kim

KimFiva
Member

Re: Tamoxifen

Hi Mai,

Happy to know you don't have side effects anymore. Do you mind telling me if tamoxifen messed up with your period? I've been taking it for 18 months and my period now has come in 15 days. I'm worried because one of the side effects can be endometrial thickness. With lockdown I don't even know how to contact my GP.

Wish you a good weekend,

Kim

KimFiva
Member

Re: Tamoxifen

Hi,

I bet you have started on tamoxifen by now. How's it going? I've been taking it for 18 months now. Ate the begging I had plenty of side effects, but thankfully they were all gone in a few weeks. About three months ago my period got messed up, but I'm not sure if it has something to do with tamoxifen yet. 

Best wishes,

Kim

martj
Member

Re: Tamoxifen

So glad you're not having to deal with anything you're not already used to. 

I'm 45 and haven't started menopause at all so the thought of bringing it on myself by taking tamoxifen is a little daunting 😳

I feel the same about keeping the cancer at bay and I will give it a try but I need a life balance and if the side effects cause me to have half a life then I will need to reassess.

I start next week sometime xx

EMA55
Member

Re: Tamoxifen

Hi Martj

I'm fine and, thankfully, have no particular side effects to report.  I should add however, that my 'baseline' before diagnosis was that I was having a number of hot flushes a day, enough to be quite uncomfortable though they weren't apparent to anyone else, and I was a poor sleeper as was part way through menopause.  I still have the same flushes but my sleep has improved slightly in that I go to bed around 0100 and sleep through until 0800. When I was having treatment I was still awake at 0430 which was horrendous. I attribute the better sleep to the end of radiotherapy - not tamoxifen 🙂 

I don't know my official risk factor as haven't met my oncologist yet, we've just had a quick chat on the phone, but am not too interested in that at present as how I see it is that the risk is that the cancer comes back (or it doesn't). I really don't want to go through this again so will stick with tamoxifen until any problems appear - then I'll look at risk factors.  

I'm taking the standard 20mg at 22.45 each night (I've set an alarm on my phone to remind me...). Are you still making up your mind? I'm still reading about all the side effects that could be lining up for me, ha ha. 

martj
Member

Re: Tamoxifen

Hi ema55, 

Just checking in on how your getting on with the tamoxifen. 

Do you mind telling me what your risk factor was and what dose you're on?

Hope you're well

Xx

Mai7
Member

Re: Tamoxifen

Martj, just keep eating as healthy as you can and remember diet and nutrition cannot prevent cancer, it can only reduce risks.  Prevention suggests there are guarantees and anyone suggesting there are guarantees is wrong.  Healthy eating is always better for general well-being and also avoiding heart disease which cancer treatments increase the risk of.   Xxx

AnnaBo
Member

Re: Tamoxifen

Dear Martj, I have had similar dilemma but so far so good. The hot flashes are slightly different from what I had expected; a bit like going to Eden Project dome but not horrid at all. It is of course such an individual decision and our risk taking profile differs so much from person to person...Whatever you decide, I hope it will give you reassurance and if you go with Tamoxifen, I hope the side effects won’t be too bad! With best wishes, Anna 

martj
Member

Re: Tamoxifen

Oh tell me about it! I'm terrible for sweets 😬 it's definitely not going to be easy eating healthily.

Thanks I will have a read now xx

EMA55
Member

Re: Tamoxifen

I'm all for healthy living! I just wish I didn't have such a sweet tooth and that M&S didn't sell Percy Pigs or jelly Meerkats : ) If you're interested in Food as Medicine, I've just seen that Monash Uni is running a free online course from Monday via Future Learn.   https://www.futurelearn.com/courses/food-as-medicine

Should be interesting. 

martj
Member

Re: Tamoxifen

Love your blog its great! We, as I'm sure, many feel the same. Thankyou x

Mai7
Member

Re: Tamoxifen

Martj, I agree, healthy is good however you look at.  Here’s a generic article I wrote about it for Ticking Off Breast Cancer blog:  http://www.tickingoffbreastcancer.com/guest-blog-nutrition-after-cancer/ 

martj
Member

Re: Tamoxifen

A healthy lifestyle can't be bad for you whatever way we look at it. I suppose we just need to feel we're doing something to reduce our chances of any other cancers in the future, its the only thing we can do.

Xx

Mai7
Member

Re: Tamoxifen

Hi EMA55, thanks for sharing the link.  Much of the debate appears to agree on the main lifestyle factors and the improved lifestyle approach also reduces the risk of heart disease which some cancer treatments can increase.  The conclusiveness of outcomes is somewhat unknown and continues to be researched.  I’ve certainly followed lifestyle suggestions from Dr Kristi Funk’s book and it’s done me no harm.  I’ve continued to be healthy and have not had a recurrence despite being high risk for recurrence but proving absolute cause and effect is difficult. 

EMA55
Member

Re: Tamoxifen

Will do. 

I also had a look at Kristi Funk and found this article on her 'scientific inaccuracies' which is something to be aware of: https://www.facingourrisk.org/XRAYS/Kristi-Funk-meatless-diet

I highly recommend the book by Liz O'Riordan - a breast cancer surgeon who got breast cancer - for anyone 'starting out' as it cuts through all the cancer-y nonsense that you can come across.

 

martj
Member

Re: Tamoxifen

That's great! Keep me posted to how you get on xx

EMA55
Member

Re: Tamoxifen

Hi 

I was prescribed tamoxifen and delayed starting it as I was very worried about the side effects. My oncologist suggested I try it for 3 months in the first instance just to see how I get on. I've been taking it for 11 days now and all good so far... I'm hopeful 🙂  I was already having hot flushes and they haven't got any worse. And I'm actually sleeping better - maybe I was worrying too much about it. But I appreciate it's early days.  

martj
Member

Re: Tamoxifen

Hi, 

I haven't, but I will have a look for it today. 

Thankyou

Mai7
Member

Re: Tamoxifen

You seem to be heading in the right direction with your lifestyle and I agree the Tamoxifen decision is tough with a 3% benefit.  Have you read Dr Kristi Funk’s (Breast’s: An owners guide) recommendations for lowering risk?  Lots to think about.  Xx

martj
Member

Re: Tamoxifen

Thanks, I have considered making lifestyle changes, although I don't smoke and rarely drink and have a BMI of 21, I could eat healthier and I no longer work nights, which I think was a factor. 

It's a difficult one, don't want to wish I had taken it further down the line.

X

Mai7
Member

Re: Tamoxifen

Hi Martj, I’ve been on Tamoxifen for a couple of years.  As I was 8/8 ER+/PR+ it had a higher chance of success for me.  I had muscle and joint stiffness and hot flashes in the beginning but with a plant based diet and regular exercise this slowly improved over time.  Lifestyle alterations can also lower your risk such as body mass index (BMI) below 24, not drinking alcohol or smoking,  regular exercise and eating a healthy diet.

Here is BCNs leaflet on Tamoxifen:

https://breastcancernow.org/information-support/publication/tamoxifen-bcc20 

martj
Member

Tamoxifen

Hi lovely people, 

Does anyone have any experience with tamoxifen?

My histology report says it will have a 3% benefit for me. Seems a very small percentage to risk the possible side effects that the drug can bring??

Xx