Hello and good evening,
Im in a quandary, I dont think I want to take the 5yrs of hormone tablets.
I cant find any evidence to suggest that after the 5yrs that I will be in any better position
than a woman who doesn’t take it.
Anyone got any thoughts on this.
Thank you,
Lynne xxx
Hi Lynne
Very good question and one I’m pondering right now.
I’m 60 and have already gone through a hideous natural menopause. I discussed this with my BCN as I don’t want to become a gibbering, tearful mess all over again. I was told (and I know that everyone’s circumstances and prognosis,etc is different and I would hate anyone to make the wrong decision based on what I say here) that I would be able to try it out for 3 months and if I ended up like I was before then the treatment could be withdrawn, as it wouldn’t make that much difference in my case.
I haven’t yet been told when the hormone treatment will start but based on that discussion I am very reluctant to take it.
So many decisions, and nothing seems clear cut.
Whatever you decide, I hope for the best possible outcome for you
Love, Rose xx
Lynne,
You might want to ask your onc for statistics, or you can look at nhs predict (predict.nhs.uk/predict.html). . ) That should give you an idea of the benefit, and whether or not hormone therapy is worth it for you. For me it was a no brainer, despite the awful hot flushes. 10% extra chance of surviving five years, 14% extra chance of surviving 10. If your onc is proposing it, then it must be of some benefit to you. My advice would be to try it. Some people sail through without any problematic side effects - you might be one of them. You can always stop if you hate it.
Hi loobylou
Yes, I did decide to say no to Tamoxifen…I know how low oestrogen can affect my mental health so it was based on that. I am 66 had Stage 2 Lob Invasive and opted for a mastectomy 18 months ago to avoid any radiotherapy…
I don’t know what I would have done if I had been younger. I looked at statistics and weighed up pros and cons and that is the conclusion I came to for me…I believe that everyone has to be supported in their informed decision and no-one should be made to feel bad about it whichever way they go.
Whatever you decide I hope it is right for you
Look after yourself
JenjiX
I’m 45 and have been told TEN years on tamoxifen- frankly I’m more scared of this then my op x but … The odds of my cancer - lobular - coming back without hormone treatment is just too high x I’ll have to see what happens though - have to concentrate hard in my job … It’s all such a worry x
hello, it does seem all a balance to try to understand the benefits/risks. I sometimes find the canceractive website useful for info.
Hi Loobylou,
I too had many concerns about taking hormone therapy (tamoxifen in my case).
Started a couple of months back, first 4-5 weeks had some major emotional dips for a few hours. Employer was being difficult expecting me to return to 8hr hour days with travel standing on train for 1 hr each way on top after 2 weeks back, so its a bit hard to say what was the Tamo and what was due to me stressing about extreme lack of understanding by employer. Thankfully emotional dips seem to have eased.
Periods have become irregular, early, late…all over shop…feel a bit more swollen in lower abdomen during it. And hot flushes at night but getting to stage where most nights pull top layer off automatically. Found a summer 100% cotton duvet which is fantastic!
On balance, so far, tamo has been loads better than I thought it would. That’s not to say its a party but on balance with the increased survival stats (Predict nhs online or adjuvant online although that’ll only be accessable by your consultant) I think I made the right decision for me, to take it.
The other factor to consider is that Predict online only provides figures for survival, ie not reoccurance. Some onicologist reckon that for oestrogen positive bc tamoxifen cuts risk of reoccurance by 25%. For me its not just survival but the thought of going through this again…
Also asked onicologist if one doesn’t get side affects from taking Tamoxifen during first few months, apart from the longer term risk of thickening of the endometrium etc, is one likely to develop more side affects later on? I felt quite reassured by the answer that most side affects occur in the first few months if you are going to get them at all.
Useful thread under hormone therapy called “starting tamoxifen today”…confessions of various women keeping it in the cupboard for months before starting and then follow-ups of started and still doing ok etc.
Wishing you the best with your decisions.
Ps Jets - how are you getting on?
Seabreeze
Hi
Early days on tamoxifen for me, I’ve been taking it for a week, and feel absolutely miserable today. It might be cos I had my rads planning meeting, and every time I move on a stage, it hits me again that, yes, I have/had BC, then I toddle off and let the medics get on with what they feel is best. As I said earlier, if I do become as unbalanced as I did during my natural menopause, everyone involved in my care is aware that I will stop taking it. But I shall persist a while longer
xx
Rosemaryanne,
Well done on getting over the starting hurdle…took me ages. I’m pre meno…really think the tamo dips eased before I got to 2 months. And yes you are right that other things along this journey can shake us and/or make us feel more emotional at times. I guess we just have to remind ourselves of how far we’ve come and be kind to ourselves. A work colleague asked me how I was getting on…I answered along the lines of trying to pace myself, and got a response that he thought it was quite an achievement just to be back. Think we all need to stand back at times and tell ourselves we are doing ok…
For what its worth rads are ok, I did burn a tad but they give you creams and just tell the radiographers if you experience skin changes. Also got radio fatigue, although some people seem to escape, but it does fade with time - although I wish it fade overnight! So try not to feel too worried about it.
Seabreeze x
Rosemaryanne,
I’m a few months post rads and still get fatigue - but was complicated by severe anaemia creeping up on me…which wasn’t spotted since I thought I was just feeling tired re radio.
I’d been actively pushing myself, doing walks since I thought they’d help re fatigue etc, which they do…but not such a great help when you have lost nearly all your iron and have insufficient oxygen in your blood! Mine was in part due to another issue.
At present I’m still doing slightly shorter days at work, try to do a day working from home and using some accumulated annual leave for the odd day. Thing is nearly all my energy goes on work and I feel too tired to do anything much after work…so waiting for more zip before my social life can pick up!
The fatigue does seem to vary, there are a few superwomen on here who claim to have escaped radio fatigue! I think best approach is caution re timescales…once you go back to work everyone thinks that cause you look ok, you must be. And a phased return really helps.
Seabreeze x
Hi There.
I recently posted on this issue under the heading “Anastrozole has ruined me bones.” I took it for a year and now I have osteoporosis. That’s a high price to pay after a year and the question is, what am I getting in return. How much does taking it reduce my chances of recurrence? From what I could gather, it reduces it by about 2%. but I’d like to be sure. I stopped taking it a month ago and have been doing everything in my power to build up my bones since. I wont see my oncologist until June. I wonder will he be very angry,
Hi Suin,
Do discuss it with your onc, don’t worry about them being angry, they are there to get the best treatment for you & to look at options if there are issues.
As Seabreeze says below, the stats, such as Predict, only look at 5 & 10 year survival not those living with recurrence. Hormone treatment, does significantly reduce the recurrence risk.
It might be an idea to ask about tamoxifen as it is protective of bones. I have decided to stay on it rather than change & the onc & surgeon are happy for me to do so.
It all can be such a dilemma & wishing you well with it all,
ann x
I had my WLE 2.5 years ago and had radiotherapy but no chemo. I tried all the different hormone treatments but suffered hot flushes and sweats majorly. I’m 61 now. I chose not to continue the treatment on the basis that quality of my life NOW is important to me, quantity is not something we can choose for ourselves. However I have other deciding factors as well - I have a brain tumour and I have had a heart attack which has left me with coronary disease. The whole thing is so individual, and so damned difficult to predict.
hi there
New to here but your post caught my eye. In a nutshell, diagnosed in Nov 23 with invasive ductal carninoma, very oestrogen sensitive (8) so was started on Letrozole before mastectomy in March this year. I am very very wary of our conventional treatments but decided that ripping out my oestrogen was a better idea… I am 65 and am aware of the side effects, joint pain is my friend now…as for the bone thing, I am worried, yes. I am also like you, not sure of the real benefit, but it seems we are playing roulette with the treatments offered. I did not get on with my oncologist, who frankly seemed bored, and he needed a hug more than I did!
I am not a fan of the standard of treatment in this world for breast cancer, never have been. I am trying to find folks on here who have decided not to go for chemo and radiotherapies?
My main reason for saying hello to you, was the last comment, I wonder if he will be angry. Bless you , please dont live for his approval, you decide, he is being paid to do a job held up by large pharmaceutical companies, is there money in a cure? There is def money in not curing it, put it that way… I am trying not to be cynical , its our lives and quality of lives on the line here. Please dont fret about his opinion. Good luck and be you!
Hi Stelbel
After weeks of just looking at posts on here but not contributing your post made me sign up and here I am.
Similar age, similar outlook and it sounds like we are taking a similar path which is lonely at times. I’m taking Letrolzole but nothing else and would love to make contact with you?
Hi Junter
yes lets make contact, is there a PM area ? lol not techno phobic, just techno tired!
Glad you felt able to join the conversation, but I know what you mean about lonely, I veer between completely sure Im doing the right thing going with my gut, (flora) and worrying that Im being arrogant and or stupid, which my oncologist fell short of saying, bless him, but who knows what he reallly thinks? Subject to the protocols laid down for him?
look forward to hearing from you , there must be loads of us who are not going with the usual, chemo and radio? Are we included in the UK on stats? I have a feeling not…
take care on this beautiful of days!