Not taking hormone therapy

[missmore]

Belinda & Kess

Delighted to hear you are miles down the line and doing well, it's always very encouraging and I hope to be able to post in ten years time to support and encourage other women.

Hopefully by that time the medics and drug companies will have come up with something better than the drugs we are prescribed today and ladies in the future won't have to put up with some horrible side effects that prevent some of them from getting on with their lives after surgery, chemo and rads.  It's a difficult and emotional period in our lives and the pressure put on some ladies by their doctor to take the hormones borders on bullying.  Tamoxifen is a wonderful drug but not for all of us

Sheena

[Kess]

It is a personal decision everyone has to make, and it does partly depend on your likelihood of a recurrence. If its pretty low, the extra protection from tamoxifen might not feel worth it. if you have a high chance like me, then its a harder decision. Fortunately apart from some initial mild abdominal pain (now ceased),the usual hot flushes (annoying but bearable), and a little bit of hair thinning (that could be down to the chemo) I haven't had any side effects. Certainly nothing that has stopped me getting on with my life. I have been taking it a year now - 9 to go!

[chascat]

Glad to hear the treatment is working for you Belinda x

[belinda]

So agree with you chascat. Unfortunately I was diagnosed stage 4 from the beginning, was just into my 40's. Various hormonals alone have given me nearly nine years of stability, some chemo has added more years. 

I found any stiffness did settle down after a few months.

[chascat]

I absolutely agree that if taking Tamoxifen or AI's affects your quality of life to such a degree that you would want to stop taking it, my point is why would you consider not taking before you've even begun? Many people, like myself have no problems at all so why would believe that you're going to be severely affected because others are? Why not believe you're not going to be severely affected like myself and many others and keep an open mind and give it a go?

[Jill1998]

Agree , I've come to hate the buggers, just taken mega dose of ibuprofen to stop my joint pain keeping me awake.

[missmore]

Hi nazz
loving the spirit you have, tamoxifen sometimes feels like punishment
sheena x

[missmore]

Hi chascat

it's great to hear from anyone who has been free from side effects of tamoxifen and hopefully there are many more people in the same boat

unfortunately the side effects some are putting up with are seriously affecting quality of life so much so that they would rather not have to continue taking the drugs

ultimately it comes down to personal choice and how much risk you are willing to take with your life

for me at present I'm not sure the benefits outweigh the way I feel taking tamoxifen but I am willing to give it a few months to get some sort of gauge

sheena

[Naz44]

Hi

I stopped taking tamoxifin after a couple of years as it made my periods irregular and I was experiencing a lot of lower abdominal pain and a few other 'women's' issues! Since coming off, my periods are regular (apart from the occasional blip) and I am back on track. I am not concerned that I don't take this drug at all. As someone mentioned, you can take it for 5/10 years and the cancer can still come back or you can develop something else. The same drug is prettt much offered to all women who have high oestrogen scores, but in my view, the body needs some oestrogen!

I had chemo and that was enough for me.. 6 years on and I am still here, watching my kids grow. If it comes back, I will deal with it then as it will be an entirely new journey.

At the end of the day, we can all keep ourselves super fit and healthy and STILL cancer can enter our lives!

Live for today, not what MIGHT happen in the future 🙂

Spoiler

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[chascat]

Ladies, just wanted to say if we read the side effects for every medication we took we'd never take anything. I have been on Tamoxifen for 3 years and apart from mild hot flushes to begin with have had no problems at all. I agree if you take the drug and find you have side effects that you can't live with it's one thing, but I really don't understand why anyone wouldn't give it a go when they could be completely problem free - it's a no brainer in my opinion.

[Jill1998]

It certainly doesn't guarantee you won't get a reoccurrence .Ive not heard of herbal approach.

[Mags2]

Hi ladies just to say this is my second time with a new primary breast cancer and took tamoxifen first time round for five years only for it to come back even though I have been cancer free for a number of years but put nearly 2 stone in weight on with tamoxifen. I agree being overweight even slightly can make more oestrogen so trying my best to lose some. Just wondered if anyone has been down the herbal route for oestrogen dominance?

[Jill1998]

As long as you're are comfortable with your decision that is all that matters.Its your body and you have to live with the side effects .

[Ash66]

Hi Jill

Yes the AIs also have side effects and have the added gift of thinning your bones. My mum was on letrozole for 5 years and loathed it. She had terrible joint pains and gained weight which wouldn't have helped. Also went through the menopausal symptoms which she'd already had 20 years before. The only reason she carried on was because she refused chemo and radiotherapy. I don't want to take any of them either which is why I'm not keen on going down the ovary removal route.

I agree it's a dilemma but if I get recurrence then I'll consider myself unlucky but I wont beat myself up. I'm very comfortable with the decision I've made. I'm feeling pretty good now and just about to get back to work. x

[Jill1998]

Hi ladies,I am having the same debate.Have been taking Tamoxifen for 2 weeks and have terrible joint pain ,if these side effects do not diminish I really don't think the decrease in risk is worth such an impact on my quality of life.I have heard that the "post menopausal "drugs can have some unpleasant side effects too.Problem will be if I do get a re-occurance I will you blame myself for not taking the drugs even it it may have happened anyway.

[Ash66]

Hi Mags2

I've posted many times about this and feel quite strongly about it. I took tamoxifen for 3 weeks and stopped because of the side effects. I've had one oncologist advise I have my ovaries removed so they can give me one of the aromatase inhibitors they give to post menopausal women and other one say it's not a big issue as my periods stopped during chemo so he now considers me post menopausal so I won't be producing oestrogen. Oh really?? My bcn also said they weren't bothered unless my periods come back.

I've just come to the conclusion none of them really know anything for sure. They throw the same treatments at everyone and keep their fingers crossed. I know someone who was on tamoxifen and had 2 recurrances.

Don't get me wrong, I'm grateful for what the medical profession has done for me so far. I've had WLE, chemo, bilateral mx and now I'm on Herceptin.

I want to get back to as normal as possible now and I'm prepared to take the small risk that comes from not taking the hormone drugs. Both my GP and one of the other bcns agreed with me that quality of life is more important.

I think keeping weight down and keeping fit helps as fat makes oestrogen and I'm working on that.

Sorry for the long post. This is one of my pet subjects. It's just me personal opinion and I'm not trying to sway anyone else x

[Mags2]

is there any ladies out there not taking hormone therapy? I have decided not to because of the side effects and have you found any alternatives to reduce oestrogen dominance?