Saw the oncologist on Thursday to discuss further treatment after 2 lots of surgery for a recurrence. Got offered two choices - letrozole or chemo followed by letrozole. Apparently the tumour is all gone with good margins though they did find some DCIS as well. I’ve been on Tamoxifen for four and a half years so obviously something didn’t work or I wouldn’t be back here now. As I selfishly don’t want to give up another summer I have opted for the hormone treatment only. I’m 57 years old and haven’t had a period for seven years and though I assumed I was post menopausal the blood tests I have had over the last five years have shown that I am not quite there yet, though I am now told the Tamoxifen could have clouded the results. I am a bit annoyed about that as it was something I brought up with my previous oncologist who said Tamoxifen wouldn’t make that much difference to the results. I’m waiting for more blood results now. My new oncologist made light of the fact that they could chemically induce menopause with an injection or radiotherapy but from reading up on the internet I suspect it would mean a course of injections not just the one-off that he was implying. Anyone else been down this route?
Hi Ollie
The thinking is that stopping the ovaries functioning increases the effect of the tamoxifen (I think!). It is a monthly injection of goserelin - I am due to have my first in a couple of weeks. Am having second thoughts as it stops the oestrogen suddenly and there is no gradual onset of menopausal symptoms but all at once. Better than chemo SEs though?
Moya xx
Sorry I’ve just re-read my post and it doesn’t say exactly what I meant it to. After four and a half years they don’t want me to carry on with Tamoxifen so I’ve now been prescribed Femara which won’t work if I’m not post-menopausal (which hopefully I am)That’s why they need to establish my hormone status fairly quickly. If I’m not post-menopausal they will give me something to stop my ovaries working (probably the same drug as you are going to get)so that the Letrozole (Femara) will work. It all seems a bit of a lottery to me. First time round they strongly recommended chemo and rads followed by Tamoxifen so I went along with it but this time it appears that it is entirely up to me what course I take, presumably because they can’t guarantee success either way. I coped really well with chemo last time but this time he wanted to give me Doxetaxol which I wasn’t keen on. Perhaps I read too much on the internet which he told me not to, but when he gave me the information on both routes of treatment I found that all he had done was print off information from this site and McMillan web site which I had already accessed and read before I went to the hospital. Sorry if I appear to be rambling.
Hello Ollie,
So are you asking for people’s experiences as to choosing whether to do chemo and an AI Vs an AI only for a recurrence? Sorry if I’m being really dim here!!!
Angelfalls xx
Ollie I may be wrong but how I read this situation is that now, nearly five years after your primary (when you were what 52? not having had a period then already for two years? which I thought meant you were definitley into menopause, before you ever had BC or started any treatment)
and that you have a different oncologist now than the first time, I’m not sure why the change but it seems you don’t get on with this one so well and that’s why you said you were scared - you are being given a lot of responsibility for choosing your own care after the first oncologist seems to have made a bad decision for you in the past? That now you know more and feel like you have more choice, but you are getting less help and support in making the decisions?
also you mentioned the summer, I think looking forward to a break in treatment is not unreasonable after all this time, would it be possible to suggest going for the chemo option in the autumn (depending how the blood tests come back) so you can at least have your planned summer? or time to “sleep on it” and know what you really want, what you’re most comfortable with?
sorry if I got some of this wrong.
I think it would help a lot to give the helpline a call and talk things through. Fear often leads us down the wrong path and hides alternative options.
Ollie, definitely worth talking to the helpline on Monday. I’m sure you don’t have to make your decision by tomorrow, so it’s useful to talk things over with knowledgeable and impartial people whose only interest is YOU.
Can’t give any other suggestions, though I do know Tamoifen is also prescribed for post-menopausal ladies as well, so it’s not a bad thing. Just that AIs, as far as I’m aware, are an EVEN MORE effective drug for post-menopausal ladies. Though as you say, not effective for pre-menopausal.
Best to check with the helpline though, I’m not an expert. I do know oncs like to be absolutely certain about a woman’s post-menopausal status before putting her on AIs.
Tough choice for you. Personally I’d be biting the onc’s hand off for Tax, but that’s just because that’s how I am, and through blissful ignorance as I’ve only had to have FEC for my primary.
Everyone’s decisions have to be their own, and based on their own cancer. Not a pleasant position for you to be in, so you have my best wishes in making a very difficult decision.
CM
x
I am not entirely clear what you are weighing up and whether the idea behind the chemo is to make you fully menopausal or whether there is another benefit to it in terms of your treatment.
But if you are being offered a monthly injection (Zoladex) to suppress your ovarian function, my experience is that this injection is manageable - many pre menopausal women suffer a range of side effects but if you are already on the way to menopause these may be less significant. But the monthly injection is not a major part of your life as I imagine that chemo would be.
C2010
Personally, I’d go for the hormones and monitoring. I think quality of life is very important and quite honestly TAX sucks big time. I’ve done 3 and know I will probably have to do it again in the future when the hormones stop working.
I realise I’m coming at this from a different angle as I already have mets. Bottom line - get clarity from your onc as to pros and cons and then make an informed choice that you are happy with, weighing up all the things that are important to you.
Unfortunately there appear to be very few rights and wrongs where BC is concerned so make a decision and don’t look back. You will have done the best you could in the circumstances at the time, with the info and treatment choices available to you. Don’t beat yourself up about it.
Good luck!
Thanks everyone for all your useful comments. After a really rough weekend I think I have sorted myself out and I am happy to stick with AI provided the bloods come back OK. If there is a further recurrence or mets I will seriously consider Chemo. as that will be my only option at that stage. I’ve got a different oncolgist now because we have moved half way up the country. I am sure he knows what he is talking about and to be fair he said he was happy to go along with whatever choice I made as there was no evidence that chemo. would be a better choice at this stage as my recurrence was obviously slow growing and there was no evidence of spread on my CT scan. I suspect the suggestion of chemo. + AI was a belt and braces option.
Hi Ollie
Just seen this and thought I’d back up what you’ve decided to do. I had primary BC in 2003 (low grade), had WLE, rads, zoladex and tamoxifen. However in 2008 I had a local recurrence (tamoxifen had stopped working for me) and then bone mets were found after CT and bone scans. My options for treatment were AI’s, with zoladex injections, or chemo then AI’s. My BC is also slow growing (phew) and my onc reassured me that the hormone treatment works the same as chemo but takes a bit longer to get to the same results. For me, as it had already spread through my blood system not lymph system, I chose chemo, but only because it had spread. If it hadn’t, like yours, I would have stuck to the AI’s. I have had a great response initially through the chemo but the Arimidex I’ve been on since has now kept everything stable for over 3 years now - so they do work! Regarding the zoladex, I had it in 2003, at age 41, and had bad menopausal side effects, it is dramatic suddenly going into your menopause in a month rather than taking 10 years! However, since having zoladex after chemo (my blood tests showed peri menopausal/menopausal) and then ovary ablation my symptoms have not been bad at all. Guess its an age thing.
Good luck
Nicky x
Ollie, you might like to look at the following article:
thelancet.com/journals/lancet/article/PIIS0140-6736(05)66544-0/abstract
The article is a meta-analysis of a number of studies looking at the effects of Tamoxifen compared to Chemotherapy, or in different combinations. Nicky08’s nurse is right to say that the survival rate of those with oestrogen receptive cancer, who receive Tamoxifen alone, is similar to those who receive chemo alone. However, the survival rate of patients who receive six months of chemo followed by Tamoxifen,is twice what it is for those who receive chemo, or Tamoxifen alone. These figures apply to women with primary BC, under the age of 50.