Advice needed on stopping Tamoxifen

Hi all, just looking for any advice…i was diagnosed July 2009 at 23 years old, 1.2cm lump, grade 1 stage 2, no lymph nodes involved er+, had chemo, radio, tamoxifen and zoladex. Right from the start we talked with oncologist, bc nurse, etc about wanting to start a family and they all agreed that i should take tamoxifen and zoladex for 2 years, come off them and try for a baby, so that was my plan, up until now!!! Just had appointment with oncologist and she is now saying that she has to advise me 5 years on tamoxifen!! I know that is the initial plan, but i really had my heart set on stopping these horrible things now and getting rid of all SE’s!! i really dont think i could go another 3 years on these tablets, but obviously i dont want to risk anything!! Has anyone else decided to stop tamoxifen early? I just need some advise, i dont know what to do!!! Help!!!

Bumping this up,hope you get some advice x

Have they talked through the risks with you? I had a huge lump, nodes and VI involved and a higher grade, but my onc, another onc insaw for a second opinion and my surgeon all said that the first 2 years are the most beneficial and although there is a benefit for the remaining 3 years that it’s not as great as the first 2 years - an exponential risk reduction. They didn’t go through the exact details with me as I have a high recurrence rusk - but they said they would talk it through once I’d taken Tamoxifen for 2 years if I was recurrence free - and I only just took my first one yesterday!! So a little while to go…

If I were in your position I would go back to your onc and ask for some facts and figures so you get a better understanding of the situation in order to make your decision. The bottom line is that staying on for an additional 3 years will have some benefit and will save lives. At 25 or 26 you won’t be risking your fertility much by waiting until you’re 28 or 29 unlike some of us (I’ll be 39 if I stay on Tamoxifen for 5 years and all of the evidence shows a huge decline in fertility after 35 and then again after 40 - and that’s if the chemo hasn’t damaged it) and it’s also important that we do all we can to ensure we’re going to be around for our children if we start a family.

Maybe you could also get a second opinion as it’s such an important decision? Just ask them to paint a clearer picture of the risks of stopping early based on your diagnosis so you can make an informed decision.

I completely empathise with your desire for a family and know what it feels like to feel in limbo while the treatment’s happening. I really hope it goes well for you and you go on to have a wonderful family - whether shortly or in a few years time. Make sure you let us know when it happens!!

X

Hmm, tough choice. Se’s v cancer.
Pass me the Tam…

Thanks Sandytoes!! When i went to see onc last week, that is what i was looking for, facts and figures, but she couldnt really give me any!! Said that they havent done any studies to get figures with difference of 2 years v 5 years and because i am so young, most figures are based on older ladies! I know what you are saying about me having age on my side with regards to starting a family, but its not all just about that, the SE are awful too and up until now whenever i have felt down about the SE i have been thinking i only have a couple more months to go with them, but now the thought of being on them for another 3 years is awful!! I know what everyone is saying about SE v Cancer, but there is no guarantee that taking tamoxifen for another 3 years is going to stop cancer returning, i could take it for the full 5 years and cancer could still return, and on the other hand i could stop it just now and cancer never return!! I believe what will be will be, but of course there is still that bit of me that carries on taking the tablets because i dont want to risk anything cming back!! Ahh i am so confused!!! Sorry for the moan!!! x

We’re they planning on keeping you on Zoladex for the full 5 years? Some oncs only put you on it for 2 years. If the SEs are unbearable then maybe stopping the Zoladex and sticking with the Tamoxifen would lessen your SEs but still give you protection? Maybe something to discuss with oncy? I met a few young women on the BCC Younger Women’s Forum who really suffered from the Zoladex SEs and were fine when they came off it. Tha Tamoxifen SEs were OK for them. I’ll find out soon! Am on Tamoxifen for a few months before they start me on Zoladex.

You’re not moaning! You’re confused and disappointed. If I were you I would go back to oncy with a list of questions to help you understand the risks more and if she can’t make it any clearer, maybe get a second opinion. Unfortunately that is what it will be - an opinion, but you need to be happy with the decision made. X

Thanks a lot ssandytoes! Zoladex was always just 2 years, so yeah stopping them in a month or so, which is good!! Think thats wot i am going to do, come off zoladex, stay on tamoxifen and see how SE go, if they are still awfull then maybe have to hink again, but if they are ok then prob stay on them for at least another 6months to a year!! Yeah just a bit gutted at the moment as had it in my head i was stopping both in couple months, but hey ho, wot will b will b!! x

Hi

I don’t think I can put any of this better than Sandytoes already has. But I can tell you that when I started hormone treatment last year age 36, I was told that if I wanted to have another child (I already have 2) they would consider me stopping the Tamoxifen after 2 years and then trying to get pregnant before another 3 years of Tamoxifen. I had a 1.1 cm strongly hormonal positive cancer, not in the nodes. As it happens I am not going to have more children for a number of reasons, but I do remember the discussion.

Do wait and see about the Zoladex and whether the SEs are better on the Tamoxifen only. For 6 months I was on Tamoxifen only and the SEs were ok. The only one I was aware of was that I was very dry down below (sorry! I just wanted to give you the picture!). Since starting Zoladex and Femara 2 months (due to a recurrence while on Tamoxifen) ago the SEs have been worse - joint aches and tiredness mostly. Am guessing that it will take a few weeks/months for the Zoladex to come out of your system and your periods to come back and hopefully that will make the difference that you can manage with.

I hope you get a way forward that you are satisfied with.

Claire2010

Thanks Claire2010! Yeah think that prob sounds like best plan, come off zoladex and see how i go on tamoxifen, at least i know if SE are too unbearable, well at least i have done 2 years on them and i know i can stop them if i wish!! Thanks so much for all your comments, has really helped!! x

Hi Just Married,

I am older (48) and already have teenage children so in a different position but I just wanted to say I really empathise with you, Sandytoes and others who are younger and for whom tamoxifen has a different set of implications.

Wondered what kind of ses you are getting from tamoxifen? I get the odd hot flush but otherwise it is fairly bearable after 8 months. I know, though that some people have complained of leg aches, cramps and things which have gone away when they changed to a different brand. If it is suggested that you stay on tamoxifen, just wondered if you could possibly swap brands and see if this makes the SEs more bearable xx

I can to tell just my own opinion and expierence. My onkologist sed like this: We can not to prohibit women with breast cancer have children, but we also do not recommend it.Because pregnancy is growing up all things specially if Er and Pr (+) You have to speak with your onkologist. Pregnancy is indeed a risk definitely. How big is the risk-this should be discussed with the onc.ologist. Anyway You must to decide after are you ready to risk and are you ready to be respnsible in front of your children. Sometimes people are wery selfih.But every women wants to be mother.The best - ask and onkologist will show some researches after which you could more easy to make decision.

Good luck.

Hi ive stopped taking my tablets I was in letrozole and the changed to a lower dosage…the SE was shocking I was grade one had the opp plus 3 lynthnoids out ive been off work now 6months I just want to get back to normal I had 15 sessions of rads too…I came to the conclusion that quality of live was more important to me for the sake of 1% coming back…if I would have stayed on the tablet I would never get back to normal and work…my joints was like someone at 90 blinding headaches.mouth blisters horrid taste in mouth hair thinning not sleeping shatterd by lunch time stabbing pains peeing all the time bladder full plus wayer infections…hot sweats and the list goes on ive stopped taking them now just over a week im feeli g brilliant just my joints still ache first thing in morning ive got a frozen shoulder too due to lynthnoids out…every one is different but for me I think ive made the rifht choice I couldnt go on like that I would rather not put one tablet in my mouth then I cant blame in SE…just thee odd pain killer for my shoulder now and then x
Christine x

Hi bondgirl
I know how your feeling I went to see my oncologist a few weeks ago and I mentioned I wanted to come off the tabs he talked me into taking anestrozle lower dose …I said I will guve them a try he said three months then come back to see me…if no different come off them…I looked him in the eye and said listen DO I REALLY NEED TO BE TAKING THESE TABS…he looked at me and said NO!..weather it was a sarcastic no or meaning your choice…I dont know but ive only took them for 5days and given up on them I seen it all come back again it just isnt worth it…so i said to my hubby am I being selfish if I stop taking them I said what would you do if it was you? He said well im sure I wouldnt be taking a tablet to be felling like you are he said im with you all the way its tiur dicission what ever you do …the oncologist also offerd me tamoxifen before the Anastrozole and I did refuse but all I can say is im back to my self again and loving life take care and good luck with what ever you decide x
christine x

Oh Michelle you sure have had a time of it havnt you hope your husband is ok and in the mend .it must have been a real shock for you when you found out about you…but I know deep down that I couldnt have got my life bavk to normal if I was still taking the tablets and I thought for the little % of it coming back whixh no one can predict weather we take tablets or not so I was willing to gamble and have my normal life back instead of being ill all the time like some one at 90 getting out of bed in a morning so yes quality of life is more important to me …I feel myself again within a week of stop taking the tablets… every one is different but that is my choice I wish you all the luck with what ever you decide to do take care x
christine x

Just married I can’t advise you but can share my sisters story. She was 33 when diagnosed with bc. She had a lumpectomy, all nodes removed, Chemo and rads. She took tamoxifen for 2 years and had zoladex. This was almost 20 years ago so the once was happy for her to stop tamoxifen after 2 years. She had a few months off and managed to get pregnant and have her 2nd child.
Approx 14 years later she had a mastectomy-opposite breast for widespread dcis. She did not have any invasive cells.
2 years later ie 16 years after first tumour, she had a 8mm invasive lump removed from original breast. It was decided this was a new primary not a recurrence.
She had another mastectomy and has just finished chemo. She is back on tamoxifen and may be getting ovaries removed.
It’s been a rocky road but she would never for a moment regret having her daughter.
I hope this gives you hope. Having said all that, at 23 you do have time on your side. Would it be possible to freeze embryos and then continue with tamoxifen for another 3 years. Could you ask to be referred to a fertility specialist?
I think you need time to come to a decision and as much up to date information as possible
good luck.