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Tamoxifen

31 REPLIES 31
Geranium
Member

Re: Tamoxifen

Hi Kit Kat

thanks for reply. Will definitely make sure I get an appointment with oncologist.  That was really kind of you to give me that information.  

Kitkat23
Member

Re: Tamoxifen

hi Geranium

Definitely speak to oncologist..

 

Dont take no for an answer....I had DCIS stage 0 cancer and was put on tamoxifen...I took it for 2 years but  now have a new primary which is 7/8 ER+.... oncologist advised blood test which showed I'm now fully on menopause and I will now commence letrozole...

She said if I had not been menopausal I would have been given an induced menopause and then been given the letrozole.....take care 

Geranium
Member

Re: Tamoxifen

Hi Joanie

Thank you so much for your reply. I have decided I need to speak to my oncologist.  I had my breast cancer aged 49 and is hormone positive her 2 negative. I didn't have chemo or radiotherapy as 11 mm invasive breast cancer grade 3. My main concern is my sister had breast cancer at 49 and after 7 years had a reoccurrence on Tamoxifen.  I saw my oncologist after 3 years and she said when you get to 55 we will think of taking you off Tamoxifen for 3 months and test your blood to see if you are post menopausal as I do not have a clue as I have no symptoms and put me on an aromotase  inhibitor. My GP wrote to her 

last year and she said she didn't want to see me and said keep taking the Tamoxifen. I am not sure whether I should change hospitals as she is head of oncology.  I am not sure what to do I think I will discuss with GP.  Thank you once again for reply.  It was very helpful.

 

Joanie56
Member

Re: Tamoxifen

I'm doing okay now Evie, thanks. I think I'm finally free of all the side effects from the radiotherapy which burned my skin badly. I keep wondering if things with my body are side effects from the Tamoxifen, or from the radiation. I hadn't realised that it keeps working for such a long time. 

I'm trying to think 'one day at a time' and am working on getting my energy level back to how it was before. 

Its good to be able to share this. 

Joanie x

Joanie56
Member

Re: Tamoxifen

Hi Geranium,

I'm really new to this whole thing. I had a 95% hormone fed tumour which was removed at the end of August. I started on Tamoxifen in September along with 15 radiotherapy treatments. I'm 64 and well past menopause now. I will see my oncologist in a couple of weeks time which will be my first appointment since he advised me on having radiotherapy but no chemo and put me on Tamoxifen. As a hormone suppressant Tamoxifen will put you through menopause. I know this from my sister who got breast cancer when she was 39. So I think if you've been on it for 6 years, you've definitely had your menopause. Do you still have symptoms? My mother was also on Tamoxifen and after 5 years they told her she had to stop. Because of this I queried it with my oncologist and he said basically your body gets too used to it so it doesn't do it's job anymore. He suggested that if I'm okay on Tamoxifen that I'll take it for 2.5 years and then he'll put me on another one for 2.5 years. I'm guessing that if I keep swapping them, I can keep taking them for a longer time but that is a guess. This is all the information I have but I really think you need to ask for an appointment with the oncologist even if its only a telephone appointment as so many are these days. You need to feel secure in your medication. It's not like they can assure us we'll never get it again so we need to do the most for ourselves and ask the right questions. 

Optimisticmz
Member

Re: Tamoxifen

Good Evening. I am not under an oncologist as my care was referred back to the surgeon after active treatment. My surgeon gave no explanation as to why they don't test to see if I have gone through the menopause. My GP just said "there is no reliable test" but I think it might be cost cutting measures as it took them a year to refer me for a Dexa scan (still awaiting results, said allow 2 months). Michele x

 

Kitkat23
Member

Re: Tamoxifen

Hi Optimisti

Can you instead ask your oncologist??  It was my oncologist who suggested blood test even though she said it was 99% definately I was post menopausal.  I had a blood test and results 2 days later confirming this and will be moving on from tamoxifen to letrozole.

take care

Evie-S
Member

Re: Tamoxifen

Hi Geranium - I’m also really interested to hear that your oncologist said you had to come off Tamoxifen for 3 months. I was on Tamoxifen when they did my blood test - it’s so strange how we get differing advice from oncologists. I’ll make a note to ask that question. Evie xx

Geranium
Member

Re: Tamoxifen

Hi Michele

My oncologist said I would have to come off Tamoxifen for 3 months and then have a blood test to see if I am post menopausal.   She said I can't have a blood test whilst on Tamoxifen as this would effect the reading.  I am 56 and still on Tamoxifen.

Evie-S
Member

Re: Tamoxifen

Hi Michele - I wonder why both your surgeon and GP refused to do a blood test to check if you are menopausal - did they give a reason? It was a simple blood test and they measure certain markers. I’ve been on Tamoxifen for about 3.5 years now and, as I mentioned in my last reply, my oncologist is planning to change me to Anastrozole next year - so sounds like a similar plan to yours and I’m similar age. I hope you are doing well. Evie xx

Evie-S
Member

Re: Tamoxifen

Hi Joanie56 - I hope you are doing ok, looks like you must just be finishing or finished treatment? I also hope Tamoxifen is being kind to you.

Thank you for sharing what your oncologist told you. I seem to remember reading somewhere that our bodies get used to Tamoxifen, so it’s interesting to hear that your oncologist also said that. In fact my new oncologist said he is probably going to change me to Anastrozole (I think) next year, but I can’t now remember why he said he will! Evie xx

Optimisticmz
Member

Re: Tamoxifen

Good Morning

This is a very interesting subject. I have been on Tamoxifen and monthly zoladex injections since my diagnosis three years ago at 51. I was advised that I would be on hormone treatment for 10 years with maybe a switch to an AI after 5 years? 

I have just had my last zoladex injection (I was advised to take for 3 years). I have asked both my surgeon and GP if I can have a test to see if I have gone through the menopause and both of them declined. It's interesting to see that others are being offered tests. I am very nervous about the possibility that my ovaries will start coming back to life!

Michele X

Geranium
Member

Re: Tamoxifen

Hi Joanie

I am in a dilemma as I am not sure if I should change from Tamoxifen to Armidex. I've taken Tamoxifen for 6 years now.  Over a year ago my Gp wrote to my oncologist for an appointment for me to see her.  The GP phoned me and said oncologist didn't need to see me and to carry on with a Tamoxifen until 10 years.  I am 56 and not sure if I am menopausal due to taking Tamoxifen.  When you say your body gets used to Tamoxifen does that mean it's not so effective.  I am not sure what to do would it be better to change to give me s better chance of not getter no a recurrence.

Joanie56
Member

Re: Tamoxifen

Hi Evie,

I know your post is from some time ago, actually from just after my diagnosis, but like reading people's experiences. I'm on a trial run on Tamoxifen as my oncologist said that Armidex is actually a better anti-hormone pill but has more side effects for your bones, joints and muscles which is why he wants me to try Tamoxifen for 2.5 years. I also understand that our bodies get used to Tamoxifen after 5 years and that's the only reason to change to another medication. 

I'm a bit older so already very post menopausal. Not sure if that makes the difference. 

Jill1998
Community Champion

Re: Tamoxifen

On balance the Oncologist decided there was probably more risks than benefits from hormone therapy for me due to the toll on my bones and risk of blood clots as I keep having to have surgeries on the bones I break .It does worry me that I don't have that back up but nothing much I can do about that .I don't have ovaries anymore so I suppose that will reduce the oestrogen risk - it's not great for my beard though !! 

DizzyDee
Member

Re: Tamoxifen

So good to hear from you Jill 🤗. Made my day! I too had gynae issues with Tamox thickened uterus lining got it removed but thankfully no cancer. Its a rollercoaster isn’t it? So no more hormone therapy for you? Guess its a relief but also scary know what you mean. I am still down for yearly mamos at my hospital. Thought they would stop after 5 years but no have my appointment for next year. Guess they will be doing it for further 5 years. Sending you a massive hug Jill i have missed you xxx 

Jill1998
Community Champion

Re: Tamoxifen

Hi Dee, just saw your post and thought I'd pop in and say hello ! 5 years - hard to believe really all that time has gone past .Just got my 5 year mammogram results back clear too - had same feeling of dread as I opened the letter as always - being discharged now from Oncology and back to 3 yearly mammo - good but also scary .I had to come off the Tamoxifen after 18 months as it very kindly gave pre-cancerous cells in womb -subsequent hysterectomy set off a genetic disorder I didn't even know I had and has led to brittle bones !! That's probably why it doesn't feel like 5 years - been kept busy with other health **** !

DizzyDee
Member

Re: Tamoxifen

Know exactly what you mean Geranium. My oncs told me when I finished intial treatment as I was 44 that 5 years Tamox followed by 5 years AI was the way to go pending my menopause function at 5 years. I am at one of the best cancer hospitals in London so they are at the cutting edge of all the latest research. 
So good to have virtually met you Geranium so makes a difference going through this with other ladies. 🤗 

Geranium
Member

Re: Tamoxifen

Hi Dizzy Dee

So pleased your mammo was clear. It's always scary waiting for the results.  I was exactly the same as you. I was diagnosed at 49 and periods stopped immediately.  I am now 55 and not sure if I am menopausal as only night sweats.  That would be great to hear another oncologist point of view.  I am not sure whether to request to see a different oncologist as my oncologist didn't even want to see or speak to me just had a message via the doctor "keep taking the tablets."  I do read a lot on the internet and it does indicate armotase inhibitors are slightly more effective and less side effects.  Maybe my oncologist things because I am ok on Tamoxifen then I should continue, but ifthere is something better why not give it a go.  Thank you so much for your reply. After 6 years it's good to talk to someone in a similar situation to me. I know it sounds crazy but I have buried my head in the sand (due to being scared) and I am only now finding out things. 

 

DizzyDee
Member

Re: Tamoxifen

Will ask oncs about 3 month tamox free before test too and see what they say and report back. 🤗 

DizzyDee
Member

Re: Tamoxifen

Hi Geranium, 

Just had results back from annual mamo all clear 😊 Hospital phoned me told me to keep taking Tamox i have hormone blood test next week to see if I’m menopausal. If I am will have dexa bone scan before starting Letrazole. If i’m still peri menopause will have another blood test 3 months time. Thanks for advice will ask my team when i get blood results it takes 2-3 weeks for results. I’m 49and like you period ok but when i started tamox 5 years ago they completely stopped so difficult to tell if I’m menopausal oncs said. Will let you know how it goes and thank you. Makes such a difference knowing someone is going through the same. Thanks Geranium we’ll get through this together 😊🤗

Geranium
Member

Re: Tamoxifen

Hi Evie

Thanks for reply.  My B.c. was grade 3 er positive her negative ductual.  Yes it so confusing on this menopause  business.  Conflicting information.  I had my bloods tested by a gynaecologist who told me I was peri menopausal 3 years ago but when I saw my oncologist she said my readings would be effected by Tamoxifen and I should come off it for 3 months before having a blood test.  I have looked up A1 and Tamoxifen and if you are post menopausal I think recurrence is slightly lower and the side effects are slightly better. I will let you know it might be in a few weeks what the oncologist says.  

Evie-S
Member

Re: Tamoxifen

Hi Kitkat23 - thanks so much for coming on and sharing your experience and advice. I’m really sorry to hear that you found another primary and wish you all the very best for this treatment.

Hugs, Evie xx

Kitkat23
Member

Re: Tamoxifen

Hi Evie

I took tamoxifen after last diagnosis in 2018 however this time round Onc says I will definitely move onto letrozole....I will have a blood test to determine if post menopausal and if not I will have my menopause induced....I probs am tho as I’m 55.  Like you say, lots of different advice but everyone has different circumstances.... My Onc said, in my case, that as I have been taking tamoxifen for 2 years and still got another primary, ( opposite breast this time) grade 2, IDC 1 node positive, 7/8 ER+ , I need to start on AIs to give me the best outcomes.

Take good care x x

Evie-S
Member

Re: Tamoxifen

Hi Geranium - mine was grade 2 IDC ER+ and HER-. That’s interesting to hear what you were told about a menopause test while on Tamoxifen. I had my bloods tested while I was seeing a gynaecologist because of womb issues, and he didn’t mention anything about coming off Tamoxifen. Curious, there is so much conflicting info out there isn’t there! I was pre-menopausal on diagnosis but post menopausal after a couple of years on Tamoxifen.

When I have googled (which I know I shouldn’t do) the various articles do suggest that AIs are better for post menopause - but I guess we are all individual and these articles are general. I did give my poor oncologist a grilling about the research I had found, but he was adamant that recurrence stats were similar. So I’d be really interested to hear what your oncologist says and anyone else on here.

You shouldn’t feel guilty requesting an appointment. You may well be able to have a phone appointment - and that really isn’t going to take long out of your oncologist’s day, but is going to help you enormously to be sure that you are taking the right drugs for you.

Evie xx

Geranium
Member

Re: Tamoxifen

Hi Dizzy Dee thank you so much. I am definitely going to see if I can get an appointment with oncologist.  I feel a bit guilty going at the moment as they are probably busy with a backlog from lockdown with cases that are more urgent.  Did you have to come off  Tamoxifen for 3 months and then have your blood test. I can remember in the in the initial meeting of taking Tamoxifen she told me this.  I am 56 and not sure if I have gone through the menopause because as soon as as I started Tamoxifen it effected everything.

DizzyDee
Member

Re: Tamoxifen

Hi Geranium,

I have just had the same conversation with my hospital team. I am 5 years post treatment and 5 years done on Tamoxifen. I am now having a hornone blood test to check my menopause status. And then having another one in 3 months time. They want to put me on Letrazole 5 years And told me this after my intial treatment. I had Grade 2 ILC. In my case AI better than Tamox. Hope that helps x

Geranium
Member

Re: Tamoxifen

Hi Evie thanks for reply.  I will contact my GP and make an appointment with the oncologist. I will let you know the outcome.  I didn't think there was a test to see if your menopausal when you are on Tamoxifen.  I will ask my GP.  When I saw the oncologist initially she said if I wanted to go on to an armotose inhibitor I would have to come off Tamoxifen for 3 months to get a true reading to see if I was menopausal.After 5 years I went to my GP and asked for an appointment but the oncologist said she didn't need to see me and said to carry on with Tamoxifen for another 5 years.  My cancer was grade 3 hormone positive her2 negative.  It would be good if we could hear from anybody else to see if they have been given the same advice.   

Geranium
Member

Re: Tamoxifen

Hi Evie thanks for reply.  I will contact my GP and make an appointment with the oncologist. I will let you know the outcome.  I didn't think there was a test to see if your menopausal when you are on Tamoxifen.  I will ask my GP.  When I saw the oncologist initially she said if I wanted to go on to an armotose inhibitor I would have to come off Tamoxifen for 3 months to get a true reading to see if I was menopausal.After 5 years I went to my GP and asked for an appointment but the oncologist said she didn't need to see me and said to carry on with Tamoxifen for another 5 years.  My cancer was grade 3 hormone positive her2 negative.  Is this the same as yours?  

Evie-S
Member

Re: Tamoxifen

Hi Geranium - I have been taking Tamoxifen for 3 years and at the end of last year had a discussion with my consultant about changing to one of the aromatase inhibitors, following a test that showed I am now post menopausal. As I seem to be ok on Tamoxifen, I was nervous about changing to one of the AIs because of side effects I had read and heard about. My consultant told me that there is very little difference between staying on Tamoxifen or moving in terms of prevention, so in my case he decided to keep me on Tamoxifen.

Do you continue to have regular appointments with your consultant after 6 years? I guess you can request a phone consultation now? Maybe also ask your GP to arrange for a test to see if you are now menopausal?

I’ll be interested to hear back from you and what you decide to do - in case you find different advice. Evie xx

ZoeK_BCN
Community Manager

Re: Tamoxifen

Hello Geranium,

Thank you for your post.

I hope that my response will help our members to see it and offer their experience or advice.

In the meantime, for clinical questions, please know that our Nurses are here and happy to talk.

Best wishes,

Zoe

Geranium
Member

Tamoxifen

I have taken Tamoxifen for 6 years and now wondering if I should change to Armidex as I am 56. I am not sure if I have gone through menopause due to Tamoxifen symptoms. My cancer was oestrogen positive her2 negative. Has anybody else changed from Tamoxifen as I have read Armidex might be more effective in stopping recurrence.