I’m just looking for some advice again! I’ve had surgery recently for a local recurrence and am waiting to have radiotherapy very shortly. In the meantime, as I appear to be tamoxifen resistant, the onc has suggested I have zoladex injections (until such time as they know where I am in the menopause cycle before arranging an oopherectomy) and take an AI too. I had the first zoladex injection on Monday, when I saw my onc, and had a blood test to measure my FSH & LH levels. I have arranged to have the next injection in 4 week’s time at my doctors’ surgery and will return to the hospital in mid-November for the 3rd injection of zoladex. It has only just occurred to me, though, that I have not also been prescribed the letrozole (and have been told to stop taking tam).
I’m interested in knowing whether anyone has just had the zoladex injections or whether you have also been prescribed an AI (without knowing your FSH/LH levels). I guess I should either contact the hospital or just go along with the zoldadex injection until I see them again in November. I’m just feeling a little apprehensive, firstly, because I’ve transferred to the Marsden and don’t want to appear awkward by phoning while yet, secondly, don’t want to regret not taking the letrozole from here onwards (if it returns again/spreads).
Any advice/reassurance welcome.
thank you very much, Naz
P.S. how much I dislike all this ambiguity!
I would think it would be worth contacting the Marsden to ask if you should have been prescribed an AI, even before the results of the FSH test come back. As far as I’m aware (and your circumstances are very similar to mine ) Zoladex kicks in pretty quickly so you would be classed as ‘post menopausal’ before your appointment in November. Unfortunately for me my local recurrence also brought along bone mets and after chemo for those I was adamant to have an oopherectomy. I was on Zoladex and an AI straight after chemo until I had ovary ablation a couple of months after the end of chemo. I’m sure there would be no problems phoning your BCN, especially since you’ve recently transferred, after all they are there to help.
I had a discussion on tuesday with my oncologist about the effects Tamoxifen was having on me and one of his suggestions was to come off Tamoxifen and start having Zoladex injections instead, there was no mention of Al’s. In the end we decided that I’ll do both the Tamoxifen and Zoladex for a while, but I just wanted to reassure you that my oncologist was happy with the idea of me just being on the injections.
I would however completely agree with Nicky and say please don’t worry about phoning your BCN for advice, there’s nothing worse than having a nagging worry that you’re doing the wrong thing and November is a long time to be worrying about it (well it is for me anyway!).
I’m also a premenopausal woman for whom Tamoxifen was not effective. I am going to have my first Zoladex injection next week with AIs as well (not sure in response to Naz’s query whether I will start those immediately or if there is indeed a pause before they start too). I will be having oophorectomy in due course as am BRCA1.
Anyway, I was just wondering if you have been given any advice about taking supplements, or nutrition advice, about managing the effects of Zoladex. I am absolutely dreading (poss not quite rational about this… so much so that I have put it off by fortnight) the change brought about by this medication and would welcome any advice.
Naz - I pmed you.
Thanks in advance
The effects are basically the same as going into the menopause - but immediately rather than slowly as you would with a natural menopause. I had Zoladex with my primary when I was 41 and I must say the hot flushes were awful but did gradually improve after the 1st 12 months. Sorry - this won’t be what you want to hear It will depend how old you are as well because the nearer you are to your natural menopause the less severe the symptoms tend to be.
Be careful though about taking any supplements especially those with phyto-oestrogen in i.e. plant oestrogen. The jury’s out as to whether this would ‘feed’ hormone positive BC or stop it. Worth checking with your oncologist or BCN about anything they say you can have.
Thank you to you all for replying.
Yes, Nicky, I have been pushing for an oopherectomy more or less since I was diagnosed (Dec 2007) but have been told repeatedly that the risks outweigh the benefits. Even with a local recurrence, and a history of ovarian cancer in the family they are still hesitating - it is so frustrating!
Thanks, Susan, it is reassuring to know that your oncologist would have been happy with the idea of you just being on the injections.
You are both right, November is a long time to wait and I’m only going to worry if I don’t speak to them beforehand. I have a bone scan on Wednesday so I will see if I can’t speak to a nurse about prescribing the Letrozole then too. I am now, though, also worried that I haven’t heard from the Radiotherapy Department so I will also be speaking to them about my treatment plan for radiotherapy on Wednesday if I haven’t heard anything tomorrow - my oncologist has told me that there is no rush for the radiotherapy - its only been 5 weeks from surgery - but I need to organise my workload - and inform my manager when I will be un/available as well as prepare myself psychologically for it.
Good to hear from you again Claire – I’ve not spoken to anyone about supplements but am considering asking for a dexa scan and discussing the usefulness of taking glucosamine and chondroiton supplements. Nicky, do you think it would be useful to ask for a bone density scan at all?
Strangely, this time around I am managing this so much better than I did the first time around - I think it might be the ADs!
I had a dexa scan done after I read somewhere that tamoxifen can cause bone loss in pre-menopausal women, although I had to ask for it. When I mentioned it to my oncologist he said that sounds like a good idea! I had read some comments on here as well about people only finding out they had a problem when a bone fractured.
I had radiotherapy in february and was also worried when I didn’t hear from the department. Again I mentioned it to my oncologist, who said he’d chase it up and a couple of days later a letter arrived! I’m not sure they always think that people do have other things going on and do actually need some warning as to when things are going to happen - although the actually radiotherapy itself was very efficient so I won’t grumble too much!
I switched from Tamoxifen to letrozole in January this year. I had a bone density scan before the switch to provide a base level for my bone density. I was told the exact opposite by my oncologist in that Tamoxifen actually strengthens your bones whilst aromatase inhibitors (letrozole, arimidex etc.)thin them hence the scans before and during taking them.
Well I thought the same, but there seems to be some studies that show if you continue to have periods, tamoxifen can cause bone loss. Not quite sure I understand why though.
I’m still counted as pre-menopausal, although I haven’t had a period since chemo. Not sure where that leaves me, so I had a scan done anyway.
Its just so difficult keeping up with everything, isn’t it?! I had thought that tamoxifen actually protected against osteoporosis in pre-menopausal women!
I’m now hoping that the small lesion on my rib that was picked up this week during a nuclear bone scan might be because of a fracture owing to weak bones, rather than being anything more sinister. Any reassurances you might be able to give me would be good (the consultant was not too concerned as it was solitary and I’d had an accident recently - I fell off a treadmill).
I also spoke to the nurse about both my RT and the letrozole. They confirmed that they will not be starting me on the letrozole until I’ve met them in mid-November so it seems that I will just have to wait until then (not really very happy about it, especially given the worry I now have following the bone scan but I guess I just have to be a little patient). The nurse did also chase the radiotherapy department and I’ve now got a date for a consultation with the clinical oncologist about having radiotherapy treatment - Monday week.
I’m conscious that this could all change if they call me in to discuss the results of my bone scan but for the time being I am keeping my fingers crossed that it is still just a local recurrence.
I will definitely be asking for a dexa scan when I see them in November, if not before, and another bone scan in 6 months time if they don’t intend to investigate the lesion any further at this point.
I hope you’ve all got a good weekend ahead of you - I shall mostly be doing not very much at all!
I think I saw you post somewhere else about the bone scan, but I couldn’t find it again to say good luck.
I’d say it’s reassuring that the consultant isn’t worried, but I know it’s very difficult to be completely relaxed until you definitely know: I had something picked up on my liver which they weren’t too worried about, but I still needed an MRI to be absolutely certain (I had a haemangioma and cyst). I’d definitely ask for a dexa scan though.
Good luck with everything and I really hope you don’t have to wait long to find out for definite what’s happened.
Thanks, Susan. I’ve been reading up on the additional tests for which I should be asking. I’ve also been looking at bone scan images to see if I can’t find something similar to my own, which, of course, has been futile, and just got me more worried. A CT scan, MRI and/or biopsy are the only things I have come up with so far - any other suggestions?
I did have a bone scan a year or so ago so I am hoping that they will compare the two scans at least (they were both taken at different hospitals) and that the increased uptake on the rib is due to something really straightforward. The original scan did show early onset of arthritis so perhaps it is that.
I should just take comfort from the radiologists apparent lack of concern - the technician just scared me!
Hope everyone is managing their own treatment.
Sorry for not replying earlier - managed to have a 3 day migraine: thought chemo had got rid of them, but the tamoxifen seems to be bringing them back. Not happy.
I did exactly the same with my liver problem and looked at all the images on the internet (I knew the lady doing my scan so she showed me in detail what she was looking at). I also knew that I shouldn’t be doing it, but sometimes you can’t stop yourself…and yes it was completely futile!
I can’t suggest any additional scans, but if they’re at all suspicious I am sure they will give you all the scans you need. I would still definitely make sure you get the dexa scan though as I re-read the NICE guidelines and they say that you should have one if you’re going to take an aromatase inhibitor.
Really hope you hear your bone scan results soon - it really does sound like they’re not concerned, but you can’t stop worrying until you’ve finally heard that.