Hi have spoken to my oncologist on whether to swap from Tamoxifen to Anastrozole. She has left the decision with me, which I am finding hard to decide which is best. I am 56 and I am not sure if I have gone through the menopause as my periods stopped at 50 as soon as I started taking Tamoxifen and I have not had any menopause symptoms. The oncologist suggested I should stop taking Tamoxifen for 3 months and then get a blood test to make sure I am post menopausal. She did say if I took Anastrozole and was not menopausal this could stimulate my ovaries. I am not sure what to do as I tolerate Tamoxifen well and this has worked for me so far but my sister unfortunately relapsed with secondary breast cancer when on Tamoxifen. I have 3 years left on Tamoxifen if I don’t change. My breast cancer was oestrogen and progesterone positive and Her2 negative size 12 mm stage 1, grade 3 with high grade DCIS and LCIS. I am worried if I change to Anastrozole this will effect my bones and I might not be able to tolerate it and I am not post menopausal or if I don’t change over my risk for recurrence is higher and I have read you should swap every 3 years. It does seem when I look at the forum most women do take an Ai.
Hello again Geranium!
a big decision for you…are you able to talk it over with your BCN …would you have the option of also having biphosphonate infusions for 3 years ? ( eg zolendronic acid) … that’s what I will be having alongside letrozole… although biphosphonates protect against recurrence they have the added bonus of being a bone strengthener ( it’s used to treat osteoporosis) …and you would also take calcium and vit d supplement alongside to protect your bones further…maybe ask your Onc… I stopped taking tamoxifen in May after this diagnosis… I had been pre menopausal when I started it 2 years previously but had blood tests which showed I am now fully menopausal ( am 55 years).
hope you come to a decision you are happy with.
Hi Geranium,
I was in a situation which had some similarities to yours and understand your thoughts/concerns.
In case my experience helps you at all…
Diagnosed early/mid 40’s invasive ductal carcinoma stage 2, oestrogen positive, SNB clear, separate patch of DCIS found in margins in/near skin. Borderline chemo but not recommended by onc. Initially 5 years Tamoxifen prescribed. Fast forward to my 5 year reviews - when I met my oncologist she recommended I consider taking Tamoxifen for an additional 5 years but weigh up with personal quality of life factors. I asked where I could find the research studies for taking 10 years of Tamoxifen, as opposed to 5 years and she told me to look at the ATLAS and ATTOM trials. I looked at the studies and concluded that for me, weighing up pro/con’s of the additional years, I would probably take the Tamoxifen for 10 years but had a few q’s.
Subsequently I had my final review meeting, with the surgeon side of the oncology team. For the first time in my treatment I met a locum with a slightly off-hand manner. I had a few questions about the ATLAS/ATTOM studies and he told me he didn’t know the answers, I’d need to speak to an oncologist about that! While I understand this, given the majority of women have to take hormone therapy as part of their bc treatment, Tamoxifen being such a common treatment, and he was reviewing patients in the bc clinic, I was surprised he wasn’t familiar with the research generally (the summary was not long - I read it in less than an hour). He then asked me when my last period was…(they went mega mega gappy as soon as I started taking Tamoxifen) and I hadn’t had one in over a year. He then told me I’d have to stop the Tamoxifen and go onto Letrozole. So, no answers to my q’s and a change in med’s…I was sooooo disappointed and frustrated.
I emphasised that my periods had been mega mega gappy since starting taking Tamoxifen and that I was really concerned about taking Letrozole at my age re potential weakening of bone. (Frustrating with the lack of answers to my q’s about pro’s con’s of years 5 to 10 of hormone therapy)! I felt his manner was quite dismissive (I must add everyone else has been great throughout my 6+ years of treatment).
In the end he referred me for a hormone test to check status re pre or post menopause. It took a few weeks to get the results of the blood test - during which time I kept weighing up decreased risk of bc for taking hormone therapy for another 5 years v potential risk of weakening of bones at my age. I wasn’t happy (I’d already had a secondary bc scare re bones).
Finally the results of the blood tests came through…not menopausal…keep taking the Tamoxifen! So all that stress for nothing! Decided to do the additional 5 years…
Which brings me onto 2 q’s re both our experiences:
1 - I had a blood test to check hormonal status while still on Tamoxifen, yet you were told you’d need to come off it for 3 months before such a blood test was done. Which is right or what’s the fuzzy grey in between?
2 - When I had previously seen my star oncologist, and asked about coming off the Tamoxifen for a few months, at the 5 year point, to see how my body was without it (you are so lucky not getting side effects) before deciding about whether to extend for another 5 years, she replied this ‘would not be advisable’ ‘since all the studies about taking hormone therapy for 10 years rather than 5 were based upon taking in continuously’, and if I stopped for a few weeks maybe, but she strongly advised against months since if there were any bc cells hiding out, that time may be sufficient for any bc to grow. Yet your oncologist didn’t raise a gap as an issue - perhaps with my bc being stage 2?
Anyway - that’s my rambling experience of the 5/10 year Tamoxifen v Letrozole debates.
I really sympathise with your dilemma - have you read the BCN info on Anastrozole?
Really sorry to hear about your sister and secondary bc - is it the same type of bc as you/genetic? I hope she’s getting on as well as can be.
Would it be worth having a follow up discussion with your oncologist? Or phone BCN?
I hope you manage to get more info or a test to help you decide which way forwards is best for you. Not sure if any of that helps but I get your dilemma!
X Seabreeze