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Being on Tamoxifen, Xoladex then starting a family!

16 REPLIES 16
debbs38
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi,
I am abit confused too, but thought Id say my consultant was quite supportive of egg collection before chemo, am waiting to hear if I can see someone in the meantime to explain it (or dont know if any of you know what the regimen is??)- she said you can use letrozole instead of oestrogens etc. (as mine is strongly oestrgen positive)to stimulate egg production before collection and said I could maybe stop tamoxifen afte a couple of years to get pregnant. Has anyone gone though the egg collection with letrozole etc. -how long did it take to get the eggs/ did you have to start at a particular part in the menstrual cycle. I think it would delay my chemo which I think I would be worried about doing and time is ticking by.
I am concerned though as because my tumor is very oestrogen positive so I cant understand why in theory it is OK to have a break from something that blocks oestrogen to have a pregnancy that increases the levels? I guess the benefits of tamoxifen for 5 years arent as big as we think? They havent said anything about xoladex is that only used in some people?
cheers

suzan
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi there I was 39 when diagnosed hormone positive bc had radiotherapy and tamoxifen for 4 years and found myself pregnant, had a lovely baby boy. back on tamoxifen for another 3 years . well originally diagnosed 1990 and had a reccurence 2oo8 18 years later. I did some research and there is no proof that having a baby increases your chance of breast cancer coming back. Please go to canncer research site and read information on there. I think the reason they tell you to wait is because the longer you go after treatment the better. I even breast fed on one breast the radiated breast dident produce any milk and it did the job of two. If its going to come back then its going to come back its just a risk you take when you go onto have children whether or not you will be around for the. Do some research and decide when the best time for you is to try and how long to wait before coming off the tablets.my boy is now 15 and I was 44 when he was born so I am now 59. best wishes suzan x

Sam_BCC
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi bearcat

As this is an old thread you may also want to start a new topic with your post.
BCC also have an information booklet on infertility which might be helpful for you to read. If you would like a copy just go to this link:-

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

Ihope this is helpful.

Kind regards
Sam (BCC Facilitator)

bearcat
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em

I see that your post is now almost a year old, but I'm going through the same issues at the moment, so I thought it might still be worth responding and wondered how you have got on with your decision. I'm 38 and was diagnosed in April following a round of IVF (unsuccessful, no embryos stored). My cancer is (was!) weakly hormone sensitive (3 on the scale), 8cm in size, grade 2 with one lymph node affected and is herceptin sensitive. My oncologist has been fantastic about the fertility side of things - when I was first diagnosed he invited us to a seminar on cancer and fertility which was hugely informative, then set up a joint consultation with himself and a fertility specialist. As a result of this they arranged for my estrodial levels to be tested since tamoxifen prevents the return of your periods - very simple, just a blood test - and my results have shown that I am not in menopause. Quite frankly, even if I wasn't wanting to try for kids, psychologically this is a great thing to know given how aging and unfeminising this disease is. So now I'm faced with a hard choice - come off tamoxifen for a while (I'd go back on as soon as I'd had a baby, if we were lucky enough for that to happen and complete the full five years afterwards)and risk recurrence, or try and adopt. Which as we all know is not straight forward - and in my case more so, cos my husband is paraplegic. The official line is you should take tamoxifen for five years (in fact my onc says that he expects this to be extended to ten years before my five years is up). I'm not on zoladex - which sounds a bit grim, my sympathies to those of you who are on it. My oncologist's view was that, given my age, I should get myself to a fertility clinic as soon as my herceptin finishes in 6 months time and take a 'holiday' from tamoxifen whilst we try and conceive through IVF. He cites two studies on IVF/pregnancy and breast cancer, one from Holland and one from Denmark that shows no significant link between breast cancer recurrance and IVF or pregnancy. I have to say, I'm a little sceptical and intend to do some digging. It seems that coming off tamoxifen would increase chances of recurrance by about 4% per each year of being off the drug (for me given my level of hormone sensitivity).

I have a few questions that perhaps people on this thread could help with. Have you had any more information on stats about recurrance linked to shorting your time on tamoxifen? Has anyone done any research into adoption and how open agencies are to breast cancer patients? Does anyone know anything about Natural Cycle IVF which just seems a much kinder, lower hormone approach to having kids after cancer?

Good luck to you all. All the best
Lisax

sherbert
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em and everyone else

This is a really interesting thread. I am in a similar situation to many of you. I was diagnosed aged 31 with a grade 2, 2.5 tumour.
I had chemo now on Tam and zoladex. I too didn't want to rule children out so was recommended to consider taking them for 2 or 3 years which I was quite happy with. I saw a different oncologist recently and I felt he was less keen on this plan and reminded me that it was usually five years. I too am now confused but I have only been taking them about a year so have got a bit of time to decide.
Is anyone thinking of going to the younger women's forum in Nottingham, maybe this is something that we could bring up?
Em, I hope you have managed to find some information and support.

Sherbert

Roxy147
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em,
My situation is very similar to yours. Was diagnosed 1 8 08 @ age 32 with 1.5mm grade 3 tumour which scored 4 on hormone test so in middle of scale. Had lumpectomy, (no node involvment, Zolodex, chemo and rads. Now on Tamoxifen.I only had the zoladex injections while I was havin the chemo but not since..why are you still havin them? My consultant said take tamoxifen for 3 years then can try for more children but after 4th chemo said he advises me to wait at least 5 yrs if not at all. I was devestated as i too was lookig forward to havin a baby at the end of it. It left me wondring what else he wasn't telling me or sugar coating for me and i know don't want to ask him anything. Am trying to find out as much as possible about preg after BC from internet and my Dr.

Vicky

katey
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hello all,
Just thought I would leave a quick post. I'm Katey and was diagnosed in 2005 at the age of 27. I had a mastectomy, ivf, chemo, zoladex & tamoxifen. I came off Zoladex in March last year after 2 1/2 years on it. I got my periods back in December!!! Woo hoo! I am looking positively into the future and hope one day to start a family. I know plenty of women who have gone on to have children after breast cancer so there is some hope.
Stay strong...
Katey x

Lipstick
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Dear all,
What a fantastic thread of people being so real and upfront which is really positive. I too am on tamoxifen and zolodex and was told 5 years tamox and 2 years zolodex. My question, probably sounds stupid, but is this time frame from the day you start taking the drug or the day of diagnosis or no. of zolodex injections because i took zolodex whilst going through chemo and then stopped and restarted when periods came back. There is no way I can stay on zolodex for 2 years as the side effects are preventing me from working or doing very much with my life!!!! But if I take tamoxifen for 5 years from date i started taking them then I will be 41 when i finish the drug (was diagnoosed when i was 35) The one thing i always wanted was a child so does this mean i should forget about it?
This is such a complex subject for so many of us and I think it is such a shame that there is not enough information on hormone therapy but only chemo!!!!! I thought chemo was the worst part of the treatment for cancer! However I have discovered thats just the tip of the iceburg! Although chemo was so horrendous for me and is infact the only reason why i am continuing to take the zolodex! There is no way i could do the chemo thing again and so will do anything to keep the cancer at bay!
Sorry if this sounds a bit low beat but it is such a sensitive subject that no one else could possibly understand other than yourselves.
Many thanks for sharing, Lipstick.

Zippy
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em,

Please consider children very very carefully, I was first dx when i was 29, and like you put on tamoxifen for the magic 5 years and was desperately hoping after 2 years to come off and plan for kids which they indicated to me was a possibility too. I had had a miscarriage the year before being dx so was desperate for tryin for kids. I have to admit after the 2 years i did mess around with not always takin my tamoxifen hoping to acccidently become pregnant! altho in hindsight i realise now maybe that made my cancer return?? as i was playing with my hormones which i didnt realise then.

But i developed bc again after 2 years and then realised that evidence i found seemed to indicate that when you are pregnant your hormone levels raise, and so puts you at risk to develop cancer again if you are very oestrogen positive which i am. i then went on zoladex for six months then decided to have an oophrectomy to give me the best chance to try beat bc to reduce my oestrogen levels further. however i have since had more bc and latest is in my lungs and spine, altho its stable and am on arimedex. I really hope this doesnt happen to you, but just want to say it can happen and yes there will be success stories but also stories like mine.

but my message to you is, please do take the advice you are being given seriously hopefully the 5 years will fly by and you will still be young enough to have kids.

i was goin to adopt and until my last dx they would have considered me, im not sure i would sign up for it now even if i could as i wouldn want any children to see me ill and me not being able to look after them.

I am sorry to email this but 'you' are important and need to decide whats important to you......... A lady who used to work in our office, was told not to have kids as she had cancer and she did against the advice of the consultants - she is now not with us and leaves behind 2 young toddlers.

Sorry to be blunt.

I absolutely sympathise with you and I know how hard it is to take the thought of not being able to have kids for at least 5 years, but please do some research before you stop taking tamoxifen, or perhaps get a second opinion?

xxx

Kte281
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em/Carla

I'm really interested in this thread as I was told by my Oncologist that they recommend Tamoxifen for 5 years, but if I wanted to I could come off it after 2 years to try for Children.

Carla do you really have success stories of hormone positive ladies who have gone on to have children? I'm stil hoping for my periods to return, I'm 29 and I finished chemo in July 08. I don't think us younger ladies are given enough information on fertility and children after this dreaded disease.

Kate
x

carla
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em,
I don't post at all really anymore, just peek in now and then to see what's hapening but I may have something to offer you! I was diagnosed June 06 age 30 , had mast, chemo, rads and my original treatment plan as decided by my main Consultant Oncologist back then was for 2 years Zoladex & Tamoxifen as I wanted to have children. Over the years I've seen locum Consultants, Registrars and others who have been nothing short of horrible to me, telling me I must have misheard my Consultant back in 2006, or got mixed up because I would be on hormones therapy for 5 years. I was not confused, or hard of hearing back then and stuck to my guns - never arguing with them, just holding back til I saw my chief Consultant. I confirmed my treatment plan with my breast care nurse and stopped my hormone therapy as planned just in January there. I made sure I would see the 'boss' at my appt last week and the first thing he said to me was, 'so you've stopped the hormone therapy then, how's that going!'
Have you seen/ spoken to the original Oncologist who decided on your treatment plan? If not, you need to see him/ her to confirm your plan, and if so then you need to go back to them and discuss your treatment in accordance with how you feel about having children. If still no joy then go for your 2nd poinion.
I remember well the first time someone said to me 5 years and I left the hospital in tears, hysterical actually so I do know how you must be feeling. When you are originally told something you set your mind to that and I was counting down my Zoladex injections!
Be strong and stick to your guns Em, get in touch if you want to chat more about this; I have a lot of information on the subject (far to much to type here!)and do know of a lot of women who have had babies after treatment.

Carla x

emmap1000
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi

Thanks for the advice. i think i will check about the zoladex as from what your saying 5 years seems a bit long.

my cancer was grade three, and lots of nodes involved.

I have been searching the internet considering my options. I have read somewhere that while your on Tamoxifen you can have a test done to see what your FSH levels are and that can give you an indication of fertility.

Anyone had this one?

lolly73
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em

I am 35 and am on tamoxifen and zoladex. As I am aware the standard time for these is 2 years for zoladex and 5 years for tamoxifen, which is what I am having. If I can ask, what size and grade was your tumour? Any nodes? Mine was 2.1cm, grade 3, no nodes.
I would definately query the zoladex as 5 years seems a long time for this.

Lucy_BCC
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em

Please feel free to call our specialists nurses on the helpline or use the 'Ask the Nurse' service for support and information about your concerns. The number is 0808 800 6000 weekdays 9-5 and Sat 9-2 and you can email our team via this link:

http://www.breastcancercare.org.uk/server/show/nav.527

Best wishes
Lucy

Dahlia
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Em

You must be devastated by this after having your expectations set incorrectly.

Stay calm and ask for a second opinion; you're entitled to one so don't be fobbed off or made to wait, just go for it.

Meantime get the nurses to give you some EMLA cream; I had it for nearly all chemo sessions and it works. I've also used it since for blood tests but my stock has now run out!

Every good wish to you. GET THAT 2ND OPINION!!!!!!!!

lizcat
Member

Re: Being on Tamoxifen, Xoladex then starting a family!

Hi Em,

Sorry can't help you with any of your queries or the side effects of Zoladex but noticed you said they are painful. I was given Emla anaesthetic cream to put on my stomach as a biggish blob about an hour beforehand and I sometimes feel a small prick and the last 2 times I haven't felt a single thing - had the nurse not been standing next to me I wouldn't have known I'd had it. I've had 6 so far. Apologies if you already have this and it doesn't work and I realise this isn't your major issue. Sure someone will be along soon with answers to your queries !

Liz

emmap1000
Member

Being on Tamoxifen, Xoladex then starting a family!

Hi Everyone

I am usually a silent viewer of these forums and have found them really helpful through my cancer journey - so thankyou to everyone who contributes.

I was diagonsed in February 2007, i had a mastectomy, chemo, radiotherapy and am currently on monthly zoladex injections and tamoxifen. I was 32 when i was diagnosed and just thinking about starting a family and the big diagnosis put a halt to that. When i was originally discussing my treatment with my oncologist we talked about me being on the Tamoxifen and zoladex for 2 years and if things were going well i could come of them and hopefully see if i was still fertile with a view to maybe starting a family.

Well i am now almost at the 2 year mark and things are going really well, so i asked about coming off the drugs and was told no i would have to be on them for the full 5 years. It's come as a chrushing blow to find that out. I had mentally set my sights on coming off the drugs this year and facing whatever came along regarding fertility. I am angry that i was told 2 years in the first place as that's what got my hopes up. I wanted to find out what regime other people were on? Is there anyone out there that has got pregnant after breast cancer? Does anyone know of any research that has been done on it?

I am looking to get a second opinion and would appreciate any advice on where to go for this. The thought of 3 more years of the painful injections and the 'delightful' side effects makes my heart sink, so i'm not prepared to accept this decision lightly.

Any help or advice would be much appreciated.

Thanks

Em x