Why the switch from Tamoxifen?

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I’m feeling a bit stupid to be honest. I saw my surgeon yesterday to ask about ovary removal but my blood results showed menopausal gonadatrophins. He said an oophrectomy was now pointless.
I’ve been on tamoxifen for 8 months so he has said to switch straight away to Femara. I was so thrown by this that I didn’t ask enough questions.

I thought the idea was to stay on tamoxifen for 2 years. I was also told by a nurse that my results showed I was menopausal rather than post menopausal. I’m terrified of doing the wrong thing but my surgeon has been good up to now.

Can anyone shed any light?
Elinda x

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It seems like they are just keen to get you onto an aromatase inhibitor now you are fully menopausal. Your onc is probably one of the types that rates AIs over Tamoxifen. Did you ask him why they want to take you off of Tamoxifen? Do you have any history of ovarian cysts etc - or increased risk of blood clots - that could be exacerbated by Tamoxifen?
Can you call the BCN and have a chat?

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Hi Elinda,

I was told that Tamoxifen was only for pre-menopausal women as it blocks oestrogen in a different way. Once a women is past the menopause they are recommended to have Aromatase Inhibitors instead, as the oestrogen comes from a chemical process in the adrenal glands instead of the ovaries.(sorry I’m not a medic so can’t clarify anymore, someone else may post and clarify this further) Femara is an AI, as is Arimadex and Aromasin.

I was changed to Aromasin, then Femara after having my ovaries removed last year. But I thought that people shouldn’t rush to change over, as the menopause can take a while and bloods can vary over a period of time, sometimes people are changed to an AI, whilst taking another medication e.g Zoladex to ensure that you are definately menopausal!.

But I am not in the medical profession and I am sure that your surgeon knows what he is doing!

Take care

Nicky

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Thanks MsMolly and Nicky

There is no other reason for the switch. I’d been concerned about tamoxifen because of my previous history of severe endometriosis but had recently seen the consultant gynaecologist who had said it was fine and written to surgeon. She’d offered to do an oophrectomy if my surgeon had felt it appropriate but said it was fine to continue on tamoxifen.

My concern is that I’m not post menopausal. When I saw the Oncologist 8 months ago he said that as I hadn’t had any hot flushes prior to chemo that they would wait two years before the switch.

My breast care nurse is very unlikely to give me any answers or reassurance. Any question I’ve asked to date she’s either contacted the surgeon or given me an appointment to see him.

I am always querying everything and have had lots of problems through my treatment. I am loathe to go back with more issues but at the same time this is so critical. Perhaps my GP could help.

Elinda x

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Nicky - Tamoxifen isn’t only for the pre-menopausal - we can all take it. Aromatase Inhibitors on the other hand are only for the post menopausal because they only deal with oestrogen produced by aromatase. AIs are often valued over Tamoxifen because in some cases they are more effective.

Elinda I can really understand your concerns - I think you need to find out answers to 2 questions - why they are so keen to change you and how do they know that you are definitely 100% post menopausal now?
You need to talk to the onc about this, not the surgeon. Can you get an appt with your onc quite easily?

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Unfortuantely not. I was due to go next month but my surgeon has changed it to September. My GP is wonderful so I’m thinking I’ll see her and perhaps she can write to my Onc and surgeon.
Thanks for clarifying the two key questions, in my mind it was getting a muddle of worry!

Elinda x

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HI, yes I agree these are th right questions. I have swapped after 5 years Tamox, and think its usual to change once menopausal, but they stopped the tamox for six months while I had nothign at all, and took 2 blood test during that time while my hormones adjusted so they could be completely sure about the AI. So it sounds like they are correct, but why such a sudden change?
Sarah

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When i was dx I was 34 and pre menopausal. I was put on zoladex and tamoxifen. 15 months later I had my ovaries removed and stopped the zoladex. However, this was a year ago and I am still on tamoxifen even though I have no ovaries. I have asked why I am not being changed from tamox to an AI and have been told that if you were pre menopausal at dx then it benefits you to stay on tamoxifen for 5 years and not change to one of the newer drugs. Maybe they will change me over after the 5 years…

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I have been told the same as lolly, and this is a relatively recent change of advice. When I started tamoxifen in October 2007 I was told I would have 2-3 years on it before switching to an AI. I was still having periods at dx but they stopped during chemo (I was 44 at the time). However, last month I had my annual check up, saw a new onc as my previous one had retired, and she said the advice had changed, and that if you were pre-menopausal at dx you would now stay on tamoxifen the whole 5 years. This is because there is no guarantee that the chemo-induced menopause is permanent (and a blood test is no use as it only tells you where you are today, not what might happen next week), for some of us it will reverse, and there is now evidence that taking AIs while pre-menopausal is counter-productive, doing more harm than good.

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Except I have had my ovaries removed so the menopause IS permanent!

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Hi, yes I am very similar to roadrunner as periods stopped during chemo but they kept me on Tamox for 5 years till completely sure I was post menopausal, for exactly the reason she states.
However its just recently been confirmed that its ok to switch to an AI after 5 years Tamox, even if pre-menopausal at diagnoses, provided you are definietly now post menopausal
This article helps explain:
breastcancerbydrruddy.com/2010/02/15/awareness-into-action-women-who-have-completed-tamoxifen-should-consider-taking-letrozole-for-an-additional-5-years/
Sarah

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Maybe there is more to it than I was told - obviously what she told me fitted my circumstances

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Sarah, thanks for posting the article it’s very clear. I really don’t think I’m heading down the right route at the moment. I’ve only had one blood test and definitely no hot flushes prior to chemo or tamoxifen.
I hate having to question the judgement of a consultant but I think I will have to.

Elinda x

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I believe that top NHS consultants earn up to £176,242 a year.
Make him earn his money and question as much as you want. :slight_smile:

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Elinda, its not a case of questioning the judgement of the consultant, its getting enough information to enable you to make an informed choice. As patients, we must give consent to all treatment and to do that, we need adequate information, which many medics, especially those at top, are terribly bad at doing. If he hasn’t given you all the treatment options and explained why, then he is failing badly in his job. He is the expert and no doubt he has made a very good clinical judgement, but you need to be part of that decision making. If you are not, if something goes wrong with your treatment (God forbid) he will be in serious hot water. To make it easy, why don’t you write it down in a letter and either email it to his secretary or post it to him. That’s what I do and then having the reasons in writing is very useful.

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Hi Ladies

Interesting thread especially after the appointment I had today! I commenced Tamoxifen just under 3 months ago thinking I was going to be on it for 5 years - bc diagnosed last October - x2 surgeries/chemo/rads that finished 6 weeks ago. Was advised about Tamoxifen right at the beginning and that it would be a 5 year treatment.

Today I was informed the Consultant is now thinking 2 years only on Tamoxifen with a view to Oophrectomy then being done and commencement of A1 in 2 - 3 years time. I am 45 and was pre-menopausal at diagnosis (strongly ER+)- got a couple of hot flushes during 3rd/4th chemo and now on Tamoxifen which when discussed today suggested to the Specialist that chemo/Tamoxifen have put me into early menopause. When I asked however how long before a blood test could be done to see of menopause was occuring I was told it was no use having one until at least a year after chemo and Tamoxifen have been in my system as anything earlier was likely to be a false reading due to the chemo.

I’m okay to wait for the time being as my understanding of it is that the Tamoxifen is doing my bones good at the moment and providing extra ‘strengthening’ because once the A1 is commenced this will have the obvious counter effect on my bones. The Specialist also said that this means of therapy is now considered the best way forward for most pre-menopausal women with a bc diagnosis.

The oophrectomy issue doesn’t concern me at all - and as my SE’s have been so few with Tamoxifen before today I would have been okay with carrying on with it for 5 years however I am now a little confused and concerned about a change that could well have a detrimental effect on my bones long term albeit prevents the cancer recurring - what to do?? At the moment I have no idea…

Leigh x

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Leigh - they did a bone density scan on me before prescribing AIs. When I was found to have some osteopaenia and an osteoporotic verterbra they prescibed bisphosphonates to accompany the Arimidex - so as to counteract any more bone loss.

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I was supposed to be having tamoxifen for 2 years but when nolvadex was discontinued i asked if I could move to femara rather than change to a generic tam for 8 months. I had the menopause blood tests on the previous visit but my onc says they give false readings when you are on tam. I guess this is because it is a fertility drug and I was constantly warned that i could get pregnant even if no periods arggh, not at my age thank you. The AIs improve your stats by about 3.8% compared to staying on tam according to some research. Most seem to show an advantage but only once you get to the right stage. The consultant I saw recently said this advantage is much more significant if you have positive nodes or other reasons for a higher risk of recurrences but not of a great deal of difference if low risk. He did say it is appearing advantageous to anyone who is at the right stage though. He said you would always be better off taking something, even if slightly lower, than taking nothing at all. Then of course there is the consideration that generic tamoxifen is really cheap and femara is not so maybe we should ask what a private patient is given as money is not a factor in their treatment plan?
Lily x

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This is fascinating. Another example of where we’re being told different things. Okay all of our histories are going to be different but the advice is so varied.
I’m now very reluctant to switch to an AI until I have a clear understanding of the rationale. Feel a bit annoyed too that we have to keep asking all the time for information and explanations.

Don’t get me wrong, my surgeon has done a lot for me and gave me an incredibly valuable accurate second opinion including lymph node diagnosis at the start. However so much seems to depend on their mood, the amount of time they have that day etc.

Elinda x

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elinda

i think there is no problem with asking your consultant what evidence he basing his decision on. blood tests are no good really as they are only a snapshot in time and one solitary blood test should never be used as evidence… this is even if you werent on tamoxifen or any other hormonal treatment.

i was told in january i was going through the menopause following chemo my gp disputed this and wanted to do blood tests, however from my background in family planning i felt this was a bit of a waste of space seeing i was on tamoxifen and have a mirena coil in… but went along with it…

my menopausal bloods were raised indicating i was post menopausal but my oestrogen was still a bit high indicating that there was still some ovarian function so the blood tests were repeated and the showed that the menopausal bloods were still high but ovarian function was back to normal so basically i am going through the menopause!!!

i have been on tamoxifen for 3 1/2 years so have a year and half left but will be getting my ovaries out sometime this year as im a brca 2 gene carrier.

there has been no mention of changing to an AI and im quite happy to just stick with tamoxifen… it has been one of the wonder drugs of the last century and saved thousands of women’s lives.

i have been doing a bit of researching and found some research papers which indicate that AIs can stimulate ovarian function in women thought to be menopausal

this is a quote from the paper…

“The treatment of premenopausal or perimenopausal women with aromatase inhibitors can have serious consequences. These can include pain from ovarian hyperstimulation induced by aromatase inhibitors,12 13 14 as well as the increased risk of unplanned pregnancy.15 Aromatase inhibitors can also trigger a reflex increase in gonadotrophins, which causes an increase in ovarian production of aromatase and oestrogens, and can lead to an increased risk of breast cancer recurrence.”

Amenorrhoea, menopause, and endocrine therapy for breast cancer

written by Eitan Amir, medical oncology fellow, Bostjan Seruga, medical oncology fellow, Orit Freedman, medical oncology fellow, Mark Clemons, medical oncologist and published in the BMJ in December last year so its up to date evidence.

this is the one that mentions increased ovarian function
“A total of 45 such women were identified in the audit, with a median age of 47 years (range, 39 to 52 years). Twelve women (27%) showed a return of ovarian function (10 renewed menses, one pregnancy, one biochemically premenopausal) after starting an AI. Median age at restart of ovarian function was 44 years (range, 40 to 50 years).”

Adjuvant Aromatase Inhibitors for Early Breast Cancer After Chemotherapy-Induced Amenorrhoea: Caution and Suggested Guidelines

written by Ian E. Smith, Mitch Dowsett, Yoon-Sim Yap, Geraldine Walsh, Per E. Lønning, Richard J. Santen, Daniel Hayes

was published in the American Journal of oncology in 2006 Ian Smith is consultant at the Marsden.

i would say from the reading of these research papers that taking an AI at present would be unsafe. however were you to have your ovaries out which you mentioned earlier it would probably be effective as there would be no risk of you becoming premenstrual.

sorry its so long but hope it helps

i have an athens password so can access the full text of the 2009 article but not sure if you can read without this… but can probably copy extracts and reference lists if you wanted to show your consultant.

Lulu x