Tamoxifen Versus Letrozole versus no drugs?

Hi Dedalus

Sorry I don’t know your wife’s age ? My mum had Tamoxifen about 13 years ago aged from 69 for 5 years. There were no AI’s then. She never had any issues and is fighting still aged 82. I was 51 when diagnosed , chemotherapy put me into menopause , so I was already having hot flushes before I started taking it, so I couldn’t blame the Tamoxifen for that. I can’t say I have had other symptoms, and am still on it 3 1/2 years later. I came off them for 12 weeks last year when I had an operation , but really couldn’t tell any difference. 

I can’t comment on AI’s ,but most people don’t have side effects, it may seem like they do reading messages on forums but that is usually where people are reaching out for answers and help. I know several ladies who have been or are on Letrozole , my aunt had anastrozole , and they have had no issues. 
Having said all of that ,depending on your wife’s age, and her predict score (which you won’t really be able to do until after surgery) it maybe she decides not to take the trial if she is concerned about side effects ?

It is all down to a personal decision , there is no right or wrong , we are all so different and have so many personal reasons as well as physical for what we decide to do with our treatment. 

Hope this helps

Jo

You asked about the advantage of Letrozole before, saying her advantage was less than 1% at 10 years.

Is her tumour size very small and grade low? For me it's a 4% gain, which changes 10 year recurrence (albeit based on the Tamoxifen trials and that would be less effective) to 6% death rate instead of 9%, as chemo and biophospates change percentage too. I imagine in the next few years treatments will emerge which make survival rates significantly higher as well. That's why I'm struggling on with the tablets! Your wife's data isn't on the 'about me' section of your account, so it's hard to tell, but I'd be surprised if her gain is less than 1%, and certainly at that it seems pointless taking it as the overall risk must be very low and side effects mitigate them:)

Hi Jo

Many thanks for your reply.

That is positive news regarding the Tamoxifen for both you and your mum.

I agree that everyone's situation is unique and so it becomes a personal decision.  I was looking for positive experiences re Tamoxifen in particular, and yours have helped.

Best wishes

D 

Hi Londonmumof2

Many thanks for your reply.

I have added my wife's preliminary diagnosis to my profile.

We hope that the pathology details change very little after surgery, but I am aware that some do.

Best wishes

D

Thanks for the update.

It looks like based on the initial diagnosis her gain is only about 2% which is great, and leaves the oprion open to take it or not.   My pre-surgery results would have given 3.2% gain (now 4.4%) from letrozole,  and the chemo 2.5% gain (now annoyingly updated to only 3.6% gain,  down from 4% which would have made me question having it), so didn't really change a lot despite the positive node which didn't appear in the US, and the tumour 3mm larger in size 2 weeks after my initial diagnosis scans when I had the surgery. They did also find an area of DCIS which didn't show up in 5 mammograms and an ultrasound!

As you know,  the tamoxifen carries a risk of blood clots,  but it's low risk.  My blood pressure was about 125/78 pre- chemo,  but is now more like 138-143/85 at the moment. My heart,  clotting etc. will be checked when normality is resumed as it's probably from the chemo, and that was too high for my oncologist to swap me to tamoxifen. 

Good luck to your wife on Friday!! She'll be sore and groggy afterwards so need lots of pampering:) xx

Thanks again LM02

From your experience with post-surgery pathology, it seems we will have to wait before we have the certainty to plan ahead.

Best wishes

D

Hi There

cannot comments on the benefits of Tamoxifen over Letrozole, but thought I would give you my experience of lLetrozole, by the time I had had a mastectomy , had chemotherapy l was told I would start On Letrozole, I was given 5 pages on the side effects and was very angry , didn’t want it , felt I had been through enough without all those side effects , went on this website for re assurance but got none as most reports were about people finding they got terrible joint pains and menopausal symptoms. I have never commented on here before but wanted to share my positive experience. I started on Letrozole beginning of January after being persuaded by my consultant to try it, I waited with apprehension for the side effects, so far nothing significant, yes I get the occasional hot flush but other than that feeling well and optimistic. Finished my radiotherapy and now feeling nearly normal. So my advice is try it first, the blood clot and stroke risks are the most minimal risk from all the others . All the best 

sasha

Too true Sasha /  Sashaatthesea

Almost all of these cancer treatments come with a mahoosive list of 'possible' cr*p side effects and they are duty bound to inform / pre-warn patients of these.

Problem is most read the list as 'Probable' side effects when in reality most will only get lumbered with a couple of the more common issues but could easily be put off taking what could be a life saving medication :-/

Most cancer forums also only contain messages / questions when people have problems with side effects, so you get a very one sided view as those who are ok with them have no need to post.

J was on Letrozole for 5 years; waistline increased a bit, the odd morning aches with a few nightly sauna sessions thrown in but 8 years on at least she is still here living the new normal 

Dedalus - There is a blood test she could have to determine if she is peri-menopausal but as long as she is taking one or the other they can change Tamoxifen to one of the AI's or even vice-versa at a later date if required; the AI's do have the upper hand post meno though.

Hugs, G n' J

Thank you Dream thief

have read your info , your wife’s treatment has been the same as mine anniversary of my mastectomy 

June , will be I year post Op. It is reassuring to hear that she is well 8 years on ,  as you say so many people on here with sad stories, it did help me in knowing what to expect but as you say you hear about more bad experiences than good. There are many people who recover and move on with out sharing the good news stories . I wanted to let people know it’s all scary but worth going through it all. 
 Sending you both love for your future G +J

sasha

Hi can I ask if your wife took supplements with the letrozole, and what brand she settled with? Also if she managed to lose the weight after stopping? 

I'm having my ups and downs with it. Given Cipla by the hospital and crippled within 4 days.  Switched to Accord, and better apart from pain in feet which crept up legs to knees,  pains in head and after 2.5 months a posterior retinal detachment.  I stopped for a few weeks started on alternate days and have been having flashing lights in that eye since restarting.  I did obtain some Sandoz ones from a pharmacy in Spain,  and the joint pain lessened, but the head plain/ tightness increased. I'm thinking of forkng out for one month of Femara (which would currently last 2 months, but still cost c.£130 for 30 tablets. 

I've gained a bigger tummy since starting despite fast walking on the treadmill every day and lots of gardening and weight is a factor in recurrence:(