Anyone refused hormone treatment?

Hi K36, I am on Aromatase inhibitors. I started on letrozole alongside zoledex injections. The side effects were almost instant. The hot flushes, weight gain, aching joints mainly my hips  and knees, but also my feet became so painful I really couldn’t walk. I have heard from other women who really have very little or no side effects at all. I changed letrozole to anastrozole and I have been better on that, although not symptom free. 

For me I have no choice but to take this medication, as it is keeping my cancer stable, but many women do decide not to continue. I would say try it first, as you do not know how it will effect you, you may be one of the lucky ones who has minimal side effects. I also found trying different brands helped me, now I know that teva brand works the best for me so I stick with that brand. 

Also side effects are always the worst at the beginning, and they do ease with time. I know this because I have been on it for nearly 10 years, but sadly for me it is a lifetime treatment. 

Good luck with your decision. I am sure other women will be along soon to share their thoughts. 

Hi I have been on both of the above. I was on tamoxifen when i was 45 years old for about 6 years. The symptoms were hot sweats and aching bones for about 10 minutes in the morning then the aching would wear off. I was on Letrozole for 4 years i did not experiance any side effects at all. Now i am starting a new chemo treatment plan were i have to have a liquid form of tamoxifen as part of my treatment. I suppose we do have a choice what we take. I have a very experianced oncologist who's advice i followed, My first cancer was 20 years ago. I dont know how much of an impact it has on a reccurrene it has but will wer ever know really. 

Hi K36, I’m on tamoxifen and although I did suffer with some itching (different manufacturer brands) I have now found one that suits me. I do have hot flushes so I take the tablet in the evening, that way avoiding having them during the day although they do occasionally creep in. I was triple positive and have taken everything that had been offered to help prevent reoccurrence. Whilst it may only be a small percentage of benefit I would rather try than not. I am 53 so was probably nearing menopause. Ever since having chemo I do have brain fog but not particularly bad so I can’t say whether tamoxifen has really added to it. The problem I found was looking at all the side effects of these I thought no way, when I actually looked into other general drugs we get from gp’s they also have a multitude of nasty side effects too, however we take them without question. It is a very personal choice as to whether to take treatment or not and I wish you the best in whatever you decide.

Hugs from cuffcake x x x x x

Hi I am currently thinking the same as you. I will either be prescribed Tamoxifen or Letrozole depending on my estrogen levels, I'm waiting to find out, however the consultant I saw yesterday said if I find the side effects too debilitating I could opt to not take it as the benefit for me for taking it is fairly minimal or words to that effect. I really don't want to take it but of course there is that niggle that what if I don't and it comes back. But also one of the side effects is increased chance of getting uterine cancer so then I think what is the point. I think my husband will be unhappy if I don't try it and that is a bit of added pressure to try it. I'm going round in circles. Consultant also said I could delay taking it until after radiotherapy so I have time to think about it more.

Hi K36, I was diagnosed with breast cancer 12 years ago. I had a lumpectomy and radiotherapy. I was offered hormone therapy for 5 years which I declined (due to side effects) as I was advised there was only a 2%-4% chance of recurrence. 
Im not sure which medication they would have prescribed.

I was diagnosed with cancer in the same breast at the beginning of December 2023 and had a mastectomy. Unfortunately cancer was also found in my auxiliary lymph nodes, so I started Chemo on 8th Feb. Once my treatment is complete (6 sessions) I will need my lymph nodes removed. I will then have no choice regarding hormone treatment.

I know it’s difficult to judge but I do wonder whether I would be enduring current treatment had I started the hormone treatment in 2012. I will never know. 
Good luck with your decision as this is ultimately yours.
Sending big hugs to you  xx

I have a meeting with my oncologist after radiotherapy as I have told him I don't want the hormone treatment. I may be in for a telling off at that appointment but I have young children and I need to work to support them so the risk of all the side effects and how I've seen it affect my mum I'm not prepared to put myself or them through that. If I take it could end up with a different cancer or stroke or dementia or all the other things it's like dodging one bullet to enter a firing range. The cancer could come back, but I could also be in accident tomorrow. Life for me is for living and I want to be able to enjoy it with my children without 10 years of ovary suppression and hormones. Are you any further with your decision?

Hi K36, I was found to have breast cancer in 2012 at a routine scan. I had a lumpectomy and radiotherapy but declined the hormone therapy once warned of the side effects and given only a 2-4% chance of the cancer returning. 
I found a lump in my breast in November 2023 which was a recurrent cancer in the same breast and had a mastectomy. Cancer also found in auxiliary lymph nodes so having Chemo and a further op afterwards to remove these. 

I have asked myself whether declining the hormone treatment all those years ago put me at risk of recurrence, but I will never know for sure. We make informed decisions and choose the right option for us at the given time. 

All the best with your decision and I’m sure you will make the right one for you. Hugs xx

Would you not consider trying them at least? Everyone reacts to medication differently and you might be OK? If you've been selected for that route with AI'S rather than tamoxifen then it sounds like you might be higher rossi if recurrence.  I have two daughters,  and one takes after me (reacts to everything) and the other takes after her father (cab take anything with almost no food effects).

I unfortunately take after my mum and react badly to hormones and medications. Hormones especially have always caused weight gain and mental health changed for me so I'm really not keen on hormone therapy for 10years or stopping my ovaries working. The chemo already stopped them and combined with steroids already put a significant amount of weight on. I've had reactive arthritis since I was 13 and since chemo it has flared. Just want a break from everything and a chance for my body to return to normal which probably isn't achievable but at least give it a fighting chance. 

It is a very difficult decision to make, and only you can decide. As long as you feel comfortable with your decision, and it is the right choice for you. I bet you feel better now, like a weight has been lifted, because you don’t have the worry of what to do. 

It will be interesting to see what the oncologist says. When my sister stopped her letrozole because of the side effects, her oncologist said he didn’t blame her! So you might not be getting the telling of you are expecting.