Hormone treatment 5 years on

[truffle_shuff]

  Hate to put a negative slant on the increased time ,I reached 5 years  on Extemestene last year , but now got bone mets, I kept tellin the oncs last year that I was not happy, had nerve pain in arm, but was ignored to be honest.told nothin to worry about , just nerve pain from op!!!! the op was 5 years previous , so why kick in now?

 I was told that it looks like the hormones did not work for me ,  ?? well why was I not offered scans or blood tests during this 5 year period.  

So all I wish to say is , if offered extended time and you take it up , demand regular onc visits  with active follow up , not just a tick box exercise.

keep wellxx

[Jill1998]

Hi Ruth,yes it's good news/ bad news time totally normal to feel as you do !!!Brilliant that you got a good outcome and your cancer can be successfully treated ,but yes the fact that you need to take hormone therapy to help stop a reoccurrence does bring it home to you that this could come back .Good chance it won't but there will always be that nagging uncertainty .Those of us further on than you in the process are finding ways to stop that spoiling our lives and not letting it get the better of us.Good luck with the rest of treatment .Jill.

[Ruth Hill]

Hello all, I've had my lumpectomy 2weeks ago and my results were as good as they can be.( 3weeks of radiation and 5years of lotrazol hormone therapy) phew I feel like I got away with something.

the tumour was supposed to be 21mm but in my results it was 11mm.

also it's estrogen receptive. So it can be treated with one pill a day... Really..my family are all geared up and ready to party but I feel as if I will have this scary monster lurking in my head for years.. 

Does everyone feel like this. 

Lots of love and best wishes to everyone going thru this scary journey.. Xxx Ruth

[Trix]

Hi woodlandmanor

Ive just joined the group and was taken by your post. I guess your medication question has been resolved and I am curious to learn which option you took. My situation is oposite to yours. I have been taking Tamoxifen for the past 6 years, initially was due to be on it for 10. But have had a blood test and as Im now menopausal, and am about to start on letrazole. Not that my new consultant gave me much dirrection in fact he completely confussed me saying I had three options. Stay on tamoxifen, come off all medication or start letrozole. Sometimes all you want is a bit of professional guidance! 

Having come off tamoxifen i pumeted into an emotional pit of fear and anxiety.... who would of thought I would be here seven years on. Full blown menopausal symptoms I guess.

Complication with the reconstruction, lead me to a double mastectomy two years ago and

moving twice and changing health teams has been a very unsettling experience. My notes havent travelled with me and each team has its own ideas. I could rant on but i wont!

Apologise for ranting....

I hope you medication decision is working out for you.

Best wishes

[Flint]

I will soon have finished 5 years of Letrozole too and have been told that will be it.. A friend of mine has been told 10 years. How are these things decided? Is it on lymph status and tumour grade?

It would be helpful to know but I can't find any references to it, only references for a total of 10 years hormone treatment based on 5 Tamoxifen followed by five AI.

[northumbrian1]

Following advice to woodland manor as I am approaching 5 years I think. Do I stay on letrozole? My bones ache, trigger fi ngers and now I think I have a nonstop cough ( causing me to find out what tena things are.).but except for the cough I could keep going if letrozole keeps away the return of breast cancer.......

[Zeppa]

I had Tamoxifen post-menopause, for about two years I think. After that I had Letrozole, which gave me trigger finger,  and afterwards Exemestan, which was OK. I would recommend trying Tamoxifen. I stopped it because of thickening of womb walls - can you be monitored for this? Tamoxifen is quite different from the others and should be better for bones. You can always change back if you don't get on with it. There's no reason not to take it post-menopause. As for the risk of blood clots, it does have an increased risk but you should get the figures to see how you feel about it, or your doctor should advise youl

Btw I had hair thinning on all!

[koshlake57]

I have a friend who, when she finished her 5 years on Letrozole with minimal SEs  she was prescribed it again and has now been on it for 10 years for the same reason as your doctor gave you.

[Sue H-S]

Hi, I have only just been put onto Letrozole - 2 weeks before my op and op now done a week ago. When discussing with a Doctors receptionist, who like you and me, was post menopause - she saif she was very glad to be put onto Letrozole, as Tamoxifen gave her very bad side effects. Of course all of us will react differently to medication, but I would suggest if you are ok with what you have, best stick to it - as not to have to suffer other debilitating side effects. Letrozole is also a newer drug and is apparently more effective than Tamoxifen. Perhaps research on the internet as to the comparison of the two?

[Jill1998]

You can take Tamoxifen post menopause it may be worth talking your Oncologist if you feel so awful,like you say 10 years is a blooming long time.

[Skm1960]

Personally I didn't like the idea of Tamoxifen as I saw that there is a high risk of blood clots?  Plus I had my menopause before I was diagnosed.   Now on Anastrozole and I feel dreadful.  I am only 14 months into my hormone treatment, don't know how I will make it to the 10 year point.  

[Jill1998]

Joint pain/bone density issues seem to be less of an issue with Tamoxifen but there are other side effects ,hot flushes ,womb lining thickening ,hair thinning .If you are happy with what you are on I would stick with it ,but if it is causing you grief give it a go ,you can always go back to Letrozole.Everyone seems to react differently so it's trial and error .

[Lizzy_BCC]

Hi Woodlandmanor,

I am sorry you are going through this difficult time. 

I have moved your post to the Hormone Therapy Board as this is a busy board and I am sure some of our users will be answering some of your questions and providing some support soon. 

Best wishes, 

Lizzy 

Digital Community Assistant 

[woodlandmanor]

Hello
Everyone I'm hoping you ladies might have some advice for me. I have recently finished 5 years on letrazole and my oncologist is recommending staying on hormone treatment for another 5 years. He has offered to change me to tamoxifen or leave me on letrazole and his view is that as there are no studies to say which might be better I should go on which I would tolerate best - letrazole gives me bad joint pains but my bones are doing ok - I'm not sure about the side effects of tamoxifen. I'm inclined to stay with what presumably has helped to keep me well for the past 5 years but wondering if switching would be better? Although tamoxifen was for pre menopausal woman I'm being offered it now and I'm post as I was 5 years ago. Any help please would be very gratefully received thanks and love to you all xxx