hi friendsi am off to see my doc tomorrow to discuss tamoxifen. I am NOT KEEN. I am already suffering hot flashes and vaginal atrophy and muscle aches and no periods for nearly a year thanks to chemo (I am 48). My GP told me cheerily my ovaries are sterilised by the chemomy logic (?) is that ovaries produce estrogen and mine are cactus so I don’t need a drug to counter the estrogenam I misunderstanding? Has anyone else refused? From what I read there’s no data re recurrence or survival for people who refuse any thoughts appreciated x

Hi there @Jailbirdstreet. It is true that the ovaries produce the majority of estrogen, however, remember, estrogen is also produced in smaller amounts by the liver, the adrenal glands, the breasts and fat cells throughout the body. Chat to your doctor who can explain the whole estrogen / aromatase workings in the body, and the possible relevance to yourself. If it was just a matter of the ovaries in this equation, a lot of women (particularly pre menopausal, menopausal and post menopausal), would simply choose to have their ovaries whipped out rather than taking aromatase inhibitors for up to 10 years with all the side effects attached to them.

Dear nelliejsSo sorry you are in this position but you have just articulated the clincher argument. Whether Arimidex would have helped or not is of course unknowable but thar doesn't help much. Thank you for sharing this information, it's an important aspect of the difficult choices we may have to make.

Absolutely correct @Zoffiel.You know what? There is also a bit of a stigma out there that if you actually managed to keep your hair you didn't do the hard yards. I have encountered this a number of times. It shits me to tears actually.

Take the Tamoxifen. The side effects are minimal and easily managed.

I'm on Tamoxifen, I take it at night and have barely any problems :)

Refusing tamoxifen | BCNA Online Network

arpie
Member
8 years ago
@Afraser Many Thanks for that - I have yet to have the chat with the oncologist .... but so far only tamoxifen had been mentioned. From memory, my bone density is OK - tho I've been told the radiation can make the ribs a bit brittle .... Hmmm, I can still feel the hot sweats & shitty mood changes ..... My arthritis (a family failing on my mother's side - and I copped ALL the bad genes) is mainly in the hips & knees (had surgery on both) & hands - but in the hands it is particularly bad - especially at the base of both thumbs. Some days are worse than others. Sometimes it is difficult to hold anything at all & opening bottles & other kitchen items - almost impossible. :( It has just gotten worse in recent months again too. I'd been advised to have surgery on my left hand back in 2010 (luckily I didn't as my husband was diagnosed with stomach cancer the next month & that was the rest of the year 'gorn' one way or the other - and if I'd been 'in recovery from the surgery', it would have been really, really bad as it can take 5 years to recover from - as happened with a friend!!) And now it is the right hand playing up instead! :( I have all sorts of gadgets to help tho. Gosh - my vaginal atrophy started when I was about 50 - so not much activity down there in the last 15 years! :( My GP even has difficulty inserting a speculum for my pap smear as it is so painful! :(

Gee .... 10 years is a long time to be on that stuff ..... can they show you charts that show the improved quality & anticipated length of life, compared to just the 5 years of taking it (as you've already done?)

All the best on YOUR decision making too!
Afraser
Member
8 years ago
Hi @arpie
Most post menopausal women are on letrozole - such as femara - rather than tamoxifen. I got the standard warnings - hot flushes, mood swings, arthritis type pain (particularly hands) and impact on bone density. I am almost 5 years on and have no menopausal type symptoms at all, no joint pans at all, my bone density was excellent to begin with, has taken a bit of a bashing but I shall probably survive 5 years OK. I also have vaginal atrophy - which of course could have happened "at my age", which was 67 when I started, but as I had no problem at all before and real problems within 6 months, I cheerfully snort at that idea! I am not keen to continue for another 5 years (possible) but that's a conversation with my oncologist when we review the situation in April. I am not sorry I have done 5 years - it's all been manageable even if some side effects are undesirable, but I will want some very convincing stats to keep going longer! You can always stop. Given that side effects are so variable, that's always the option - if you find it manageable, then it seems a good idea - but if the side effects are making your life miserable, it's your call to say enough. Never easy decisions but still good that they are ours to make. Best wishes.
primek
Member
8 years ago
I'm on letrozole so diffetent and was through menopause. Initially more hot flushes but hardly anything at all now. Nothing else changed. Most issues I had were chemo hangover issues.
arpie
Member
8 years ago
@@Jailbirdstreet Hi there .... I am about to start radiation next week for 4 weeks - and my radiation specialist asked if I wanted to go on a "TRIAL" that would assist them in working out if other 'early/good detections/surgeries' would assist them in making decisions on what regime they should use in future early/good detections/surgeries!!! (I wouldn't know if I had the 'golden bullet' or on the placebo!)

I was lucky. My GP found my lumps early - I had them removed with minimal surgery (the surgeon removed my tumours and nodes from a single ring of cuts that isolated my nipple and everything was done 'under the skin' - so no cut under the arm for the node removal ....) and everything has come back clear! (Lucky ME!)

HOWEVER, because my cancer was aggressive - they've suggested 4 weeks of radiation - with the possibility of tamoxifen for 5 years after the radiation!

SO - when asked about my 'current' aches & pains - I said that I went thru early menopause (started at age 45) and it took 10 years to go thru. (I am now 65.) I had appalling menopause symptoms & copped the lot, I reckon! Anger/rage, depression, vaginal atrophy (that has not abated! :neutral: ,) aches & pains throughout my body ..... so when told that Tamoxifen would bring back 'Menopause symptoms' - I was not that keen!!

My surgeon has said that if I want to 'try it' - I can - but if I find it bringing on MORE menopausal symptoms than I am prepared to put up with - I can/could stop it immediately - as he is pretty sure that with my surgery & radiation I should 'have it 'covered'!!

I have heard of many women who have had the tablets and not had ANY side effects - many who started the tablets at my age.

I will be referred to an oncologist after my radiation & I will be making my decision then. I am leaning towards NOT taking the tablets!!

Good luck with your decision making - it is not easy! xxx
PeterB
Member
8 years ago
From a male point of view. I was on tamoxifin
for five years. Went off it late September, 2017 with my Oncols agreement. He said 5 years was enough. He changed to another speciality, a prof. that picked up his patients, told me he wanted me to stay on it for another 5 years.
NO WAY. Went with my original doc opinion, he got me thru the first five years of BC.
side effects of the Tamoxifin are still not fully out of my system.
Hormone levels are starting to come back. Thank God my wife says.
Tamoxifin destroys your sex drive completely in a male, both physically and mentally. Can’t wait for it to be fully gone.
kezmusc
Member
8 years ago
yeah @Brenda5,
I'm hearing you. I think in the 6 months on tamoxifen I have aged at least 10 years.
Brenda5
Member
8 years ago
Sorry to hear you are having such a tough time on Tamoxifen @kezmusc but I am glad you voiced it as I have all the same side effects plus a few more and thought I was going crazy like a hypochondriac or something lol. I envy those who breeze through with barely any side effects at all. I reckon government should grant us an immediate age pension regardless of age as I feel about 80 and I am only 55!
kezmusc
Member
8 years ago
Absolutely correct @Zoffiel.

You know what? There is also a bit of a stigma out there that if you actually managed to keep your hair you didn't do the hard yards. I have encountered this a number of times. It shits me to tears actually.
Zoffiel
Member
8 years ago
The stuff we don't get told. I guess it isn't surprising that everyone else thinks we are 'better' once our hair grows back when we have to find this crap out for ourselves.
Yours in solidarity. Literally. Frozen completely solid. Marg
LMK74
Member
8 years ago
@kezmusc, it's a Crap position to be in. I'm 43 and was pre menopausal before treatment. I was started on zoladex straight away before chemo started. I was er positive 97% and 3%pr positive. My oncologist said no to tamoxifen for me because of clot risk and my prior heart attack to bc diagnosis. I started on Arimidex in December last year after finishing rads. I feel like an old lady, my body is so stiff and sore . I've developed trigger thumb on my left hand and I can barely write for very long from pain , stiffness and neuropathy. I so wish we did not have to have this Crap stuff. I feel slowed down considerably, forget stuff all the time and have trouble concentrating on things. I wish there was a way to know what would happen if we stopped. Nobody knows so I will continue at least for now and maybe the effects may settle. I hope you find some relief from the bone aches.