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hormone treatments...anyone decided to say no?

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Member

Re: hormone treatments...anyone decided to say no?

I haven't said 'no' but don't know how much more I can take. Started on Tamoxifen, then tried Letrozole, then Anastrozole and now back on Tamoxifen. The list of my side effects is fairly long with extreme fatigue being the worst. Now having chronic pain in the boob (lumpectomy, WLE, mammoplasty and 4 LN removed). Have lymphodema. Currently waiting for appt with pain clinic. Can't tolerate pain killers so taking Gabapentin which makes me dizzy. Also have problems with shoulder and under arm so going physio. Don't think there's anything else left that can go badly, apart from recurrence! Am coming to the end of my tether and just want to throw all the tablets on the fire and dance around the flames. Don't know why I make light of it cos I get depressed and just sit and cry.

Member

Re: hormone treatments...anyone decided to say no?

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.
Community Champion

Re: hormone treatments...anyone decided to say no?

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
Member

Re: hormone treatments...anyone decided to say no?

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,

Member

Re: hormone treatments...anyone decided to say no?

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
Member

Re: hormone treatments...anyone decided to say no?

Thank you for the advice, it's good to hear of other people's experience of the unknown!

I see this as the final hurdle on the road to recovery, and just want it over. I've been warned about the fatigue and all the medics are emphatic that I should not return to work till at least 2 weeks after rads finish. That goes into the first week of May, and my manager did not seem best pleased when I told her. My job involves a lot of encouragement and motivation of the less enthusiastic members of the workplace, and I cannot do that if I'm not fully fit. I think there is little they can do if I'm sick-noted. Got another "welfare meeting" next week, not looking forward to it. I think that probably didn't help today's mood!

How long ago did you finish rads, and how are you now?

xx

Member

Re: hormone treatments...anyone decided to say no?

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
Member

Re: hormone treatments...anyone decided to say no?

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

Member

Re: hormone treatments...anyone decided to say no?

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
Member

Re: hormone treatments...anyone decided to say no?

hello, it does seem all a balance to try to understand the benefits/risks. I sometimes find the canceractive website useful for info.
Member

Re: hormone treatments...anyone decided to say no?

I've been on Anastrazole for 2 years now. No nasty side effects and no menopauseal symptoms. I never had any with the natural menopause either - maybe I'm just lucky. Having said that, I think I would have perservered even if there were side effects as my tumour was 100% Oestrogen positive and 75% Progesterone positive. 

Member

Re: hormone treatments...anyone decided to say no?

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
Member

Re: hormone treatments...anyone decided to say no?

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 

Member

Re: hormone treatments...anyone decided to say no?

Lynne,

 

You might want to ask your onc for statistics, or you can look at nhs predict  (http://www.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.

Member

Re: hormone treatments...anyone decided to say no?

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

 

 

Member

hormone treatments...anyone decided to say no?

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