Tamoxifen for 10 years?

[Kess]

nang the difference is you can take Tamoxifen if you are pre-menopausal, but you need inactive ovaries for AIs. This is why a blood test is needed before a switch. if you are not happy staying on your AI, get another opinion (or another appt with your onc if you get on with them) and talk it through. Its your decision and you need to feel you understand it..

[lincs_lady]

Hi there, I'm just up on. My 5 yrs of tam. Just had clear mammogram,waiting for appointment with consultant for physical exam and I've been told to stop tam for 6-8 weeks then have bloods done so they can propally see whether I am going to benefit staying on it or going onto something else. Risk assessment pro and cons I suppose. Presume it's hormones they are looking at with bloods. I'm 48 and haven't had a period since 2nd chemo, I'm really worried they are going to suddenly start as heard some horror stories about major floods!

[nang]

hi there, I just did a search "another 5 years of AIs" because my oncologist signed me off yesterday and said to keep on taking the arimedex for another 5 years. Blessing, you said your doctor did a blood test first...mine did not. I wonder if I should request one. How are you feeling, have you stayed on tamoxifen or have you switched to AIs?

I have mixed feelings about staying on this med: first of all, I should be glad it's keeping me alive - If indeed it is...BUT I was hoping to stop. I am convinced the extreme tiredness and sometimes dizziness I feel are due to this med. Not to mention the risk of osteoporosis. I had read that AIs were often stopped after 5 years because of "diminishing returns" so I really was convinced I would be stopping.`

My oncologist explained that women who have been on tamoxifen for 5 years are now often put on AIs and they have a better rate of survival. But the reverse has not been proven (from AIs to Tamoxifen), so he prefers to keep me on the AIs. I feel like a bit of a guinea pig here...

Some people express their gratitude at being alive 5 years on, and I too am grateful. I just want to feel better for the next 5,10,15, or 20!

[Blessing]

I'm being moved towards 10 years too.
I hit five in Nov. 12 and annually since then have had bloods taken to advise of continuation. The report came out pretty much just before my review. At 51 my ovaries are putting on a brave show and I am still not fully menopausal although haven't had a period in about 5 years.
My onc. said stick with the tomoxifen.....the side effects are less severe than what I would be moved to. The benefits outweigh the risks......really hate the hot nights, but hate/ fear cancer a lot more........

If what I read was true, Tamoxifen was synthesised down the road from where I live, I believe in 1962, it's the same age as me and I am eternally grateful it came along when I did. Women before really didn't have a lot going for them... Bring on the research!
My thoughts and wishes go out to all of you
Sarah

[pollym]

Thanks Gilly,

I did wonder whether there would be any policy to recall patients.  One thing my Onc did ask me was about side-effects.  I suppose for some people their quality of life is very poor on Tamoxifen.  When I stopped mine nothing happened for 2 months, then I had 2 periods and some very brief relief from symptoms.  Then, more or less, everything came back i.e. hot flushes, dryness; so, maybe it is the menopause as well as Tamoxifen!  I have been back on it 3 weeks - only thing I've noticed is more hot flushes but theyr'e not that bad.

I should find out something about the hip today - theyr'e having a little conference about it - options would be to do a different scan I think.  Otherwise, they will just rescan in 4-6 months as per the radiologist's advice.

Pauline x

[Butterfly318]

Hello there Pauline.

Sorry you find yourself posting again with the possibility of a pesky bone met.  As you say there will be lots of women who have stopped taking Tamoxifen in the last 12/24 months who could be offered the option to restart.  The ATLAS did show longer protection from recurrance where Tamoxifen was taken for 10 years rather than 5.  I guess it would take a long time if hospitals were to try recalling all patients and i suppose we are treated with what is the best practice at that time.  I know a few people who should have been stopping very soon after 5 years but they have been extended to 10 years.

One friend asked her GP almost 12 months after she finished taking Tamoxifen and she is back on it,  he reckons it is worth recommencing for the benefits.   I am at one of The Christie (Manchester) satelite centres and my Onc told me when i commenced July 2013 that it would be for 10 years.....

Hope you can get your results very quickly on the hip.

Take Care  Gilly x 

[pollym]

Hi everyone,

I was diagnosed 2007 with a node positive (4/7) 1.3cm grade II her2 postive and ER/PR positive BC.  Part of my treatment was 5 years Tamoxifen which finished in September 2012 when I saw my Onc's registrar. As I was not post-men there was no chance of AIs.  However, I had to go back to my Onc in December 2013 due to various pains and ended up having a PET/CT scan.  This showed lots of arthritis but also mild uptake in my right hip - at the moment they dont know what this is but there is a possibility it is a bone met. 

However, my Onc has put me back on Tamoxifen for another 5 years - she said she was doing this not because of the possible bone met but because it was now accepted that this was best practice because of the ATLAS trial which shows better survival and none recurrance rates with 10 years.  This is despite the fact I have not taken it for 15 months.  I suppose what I am thinking is that I have only got this extra 5 years because I happened to go back - there must be lots of women out there in my position who have not had to go back to see their Onc!

Pauline xx

[Butterfly318]

Evening

No interestingly i paid as normal for my check ups etc.  When the Dentist said that in his opinion and experience the Chemotherapy affect Saliva glands leaving you prone to an increase in decay and subsequent treatment he did acknowledge that NICE guidelines don't particularly recognise this.

I guess if it was formally recognised there would need to be some inclusive / free treatment but having had the Chemo which did dry up all bodily fluids and mucus membranes i would agree with him.

Take Care.   Gilly x   

[The]

Hi Gilly did you get free checkup at dentist as well as I had to pay ? Xxx

[Butterfly318]

Evening JB

For a number of years now Breast Cancer patients receiving treatment have been entitled to Free, non means tested,  Prescriptions.  It was the Pharmacy at the hospital  who told me when i was having  Neo Adjuvant Chemotherapy as i needed Steroids , mouthwash, eyedrops etc etc.....  My GP didn't have the form HC1 (Dark Blue A4 size form) so i had to ask DWP for it.  It only took about 2 weeks and they returned my exemption card.  It lasts 5 years following which you request renewal as long as you are still being treated.  I did think it may only be Prescriptions relating to the Cancer treatment but all prescriptions are free. 

I just happened to have Dentist check up at the start of Chemotherapy, Dentist asked the healthcare questions and when i told him i was having Chemotherapy he said that he thinks it can damage Saliva Glands,  may make me prone to tooth decay due to lack of natural Saliva and recommended i use a Fluoride Gel to clean my teeth. I expected to be hit with a bill for this on the way out but i was given a prescription for 3 tubes Colgate Duraphat (approx 3 months supply) and i just have to ring for repeat  when i run out.  This was also free of charge when i collected it from Pharmacy.  I have seen the Dentist 3 monthly throughout treatment and he said that my teeth / gums haven't suffered too badly and he wants me to continue using Duraphat indefinitely.      

It is amazing the difference in treatments / opinions in different areas but one things is consistent and that is that you shouldn't be paying for your medication.

Take Care   Gilly x

[BellaLasagne]

Just for the record in case it helps anyone else; I was diagnised at 43, so most definitely pre-men; Grade 2 60mm tumour but no lymph spread thank goodness. Had mx, chemo, rads then Tamox for 5 years. Have just had 5 yr point check by Onc and, without me asking, he has extended this to 10 years due to proof from ATLAS study. I asked if there was any way of knowing if or when I'll go through the natural menopause and he said "we could do a blood test but due to you taking Tamox the results will be all over the place". 

Lots of love to all xx

[JB]

Thanks, I'll ask for the form at my GPs.

jb

[Nextstep]

You need to ask your doctor for a form to fill in and then you should get an exemption certificate.  It is bad that no one told you about this - it's one of the few silver linings in the clouds, not having to pay for prescriptions!  It is bad enough having to pay for special bras, swim prosthesis, special swimming costumes etc!

[JB]

Does everyone get exemption from prescription charges?   I had to pay for mine?   JB

[catseye]

If Tamoxifen is presribed for ten years, I wonder if our exemption from prescription charges will be extended from 5 to 10 years. Just a thought...

[Guest user]

Sorry to butt in but how do you know what your ER levels are? I have been on Tamoxifen since November 2011 and had reasonably steady periods throughout. However, it had been 7 weeks 6 days since my last period started yesterday and it is just been like a brown gunk - does this mean I may be at the end of my periods now

Any info would help as I think i have been living in cuckoo land since it all began x

[rebeccag]

Me too back after some years. Also due to come off Tamoxifen in November, but as I was 42 when diagnosed (now 48), I feel too scared to come off it if a reputable study says that 10 years is better. Grrrrr. I am also wondering about Zoladex as a friend (few years younger) has had her Zoladex extended from 5 years to 7 years. Guess I'll go that way too. It must be so difficult if you are trying for a baby and have to make these decisions 😞

[Lulu34]

Btw lower risk means older age of onset (postmenopausal), node negative, grade 1 or 2, erpos. Her2 neg.... So anything out with this could be classed as higher risk..... Most oncs dont make the treatment decision alone its normally a joint decision made at a multidisciplinary meeting and its based on your own circumstances, such as your fitness, co-existing medical conditions as well as your diagnosis and your age.

Lxx

[Lulu34]

Hi carrie

tnbc is triple neg.... It responds very well to chemo.... This is the ONLY option for tnbc as it doesnt respond to hormone therapy or herceptin as these receptors dont exist and they are what give triple neg its name, its neg for Er, Pr and Her2.

after re-reading my post i wonder if what you meant to write was that you didnt think tnbc responded to hormone therapy rather than chemo? My first cancer was strongly Er positive and thats why i was on tamoxifen in the first place.... My onc thinks its beneficial for me to continue with hormone therapy to prevent recurrence but also to reduce the risk of a new hormone positive primary.

lulu x

[carrie35]

Thanks Lulu for that info. It's frustrating when oncs all have different opinions. For me makes me not place much faith in their judgements or knowledge! Can I ask TNBC is that triple neg? If so I though chemo was not offered for that?

[Lulu34]

Hopes i know of other women who had a break from tamox to have a baby and then went back on it..... I was offered this option myself but got a new primary before i had the chance to try.

i have completed 5 years of tamox although it took 7 years to actually compltete it due to a new TNBC , and a TNBC recurrence so couldnt take tamox whilst having chemo. I had my ovaries out due to carrying a brca2 gene fault so i started letrozole about 6 months ago and onc has suggested staying on it for 5 years... Its benefits are superior to tamoxifen but only for post meno women.

when i asked about tamoxifen he said it would only be beneficial to women who were still pre menopausal and had high grade or node involvement, otherwise if post meno they eould have more benefit from letrozole and if lower risk for recurrence then the risks of staying on tamox out weighed the benefits but in higher risk women it was the opposite.

i guess they will all have their own take on it.

lulu

[carrie35]

Hi Hopes I hear you and totally agree with your thoughts about it. Really don't want to be on this drug or any other - what to do???? It's a risk to stay on out and a risk to be off it, admittedly different risks but still life threatening. I hope others come into this thread to offer their thoughts.

[Guest user]

hi , I am coming back to the forum after many years. I have been on tamoxifen for 5 years and i was looking forward to my appointment this year to stop it at last. My onc. explained to me a bout the Atlas research and in my case due to nodes invol. etc it's reccomended to extend it for 10 years. I was hoping to try for a baby..
I'm not sure if I will go for 10 years because they found polyps in the uterus and a cyst and the gynae said it's because the tamoxifen. She said while doing the examination that she'd seen this changes in women on tamoxifen , theres's thickening of the walls of the uterus. The gynae and the onc said that the benefits of tamoxifen outweigh the risks. I feel I am left to choose bad from worse. I am feeling so frustrated and I cannot find a way out of this.
Sorry for the long message, I didn't realize how i was feeling till I started writing here.
thank you, I hope you can give advice/ other points of view.

[Guest user]

hi , I am coming back to the forum after many years. I have been on tamoxifen for 5 years and i was looking forward to my appointment this year to stop it at last. My onc. explained to me about the Atlas research and in my case due to nodes invol. etc she reccomended to extend it for 10 years. I was hoping to try for a baby..
I'm not sure if I will go for 10 years because they found polyps in the uterus and a cyst in the ovary and the gynae said it's because the tamoxifen. She said while doing the examination that she'd seen these changes in women on tamoxifen , theres's thickening of the walls of the uterus. The gynae and the onc said that the benefits of tamoxifen outweigh the risks. I feel I am left to choose bad from worse. I am feeling so frustrated and I cannot find a way out of this.
Sorry for the long message, I didn't realize how i was feeling till I started writing here.
thank you, I hope you can give advice/ other points of view.

[carrie35]

Interesting, I am post menopausal and probably was when I started taking it or at least on the borderline. Therefore not sure how effective it will be for me but my onc seems to think its a good idea.

[Bakeswhenstres]

Yes, I questioned my consultant after 5 years on tamoxifen in January. There has been a study (ATLAS) that shows 10 years on tamoxifen is better than 5 provided you're tolerating it well. Arimidex wasn't an option for me though as im not menopausal. The NICE recommendations for prescribing tamoxifen are due to be updated in 2014 to reflect this.

[Bethy]

Yes, my oncologist at Royal Marsden has said I will be on it for 10 years. I was diagnosed in 2008 aged 44yrs and was perimenopausal . I have taken Tamoxifen for 4+ years now and was really looking forward to the end. However, I have been told that for those with lymph node involvement and high ER levels (mine 8/8 ) its been proven to be of huge advantage.

[carrie35]

Anyone doing ten years instead of moving onto Arimidex after two? Not sure what is better a total of 5 years with mix of both drugs or remaining for longer on Tamoxifen. Would be interested to hear the opinions of other oncologists.