tamoxifen, anyone refused it?
tamoxifen, anyone refused it? Tamoxifen, what a lot of conflicting stuff has been written about it, I won’t list the against’s that i have read, some wild and wacky, some positvely believable.
It doesn’t seem to make a huge difference to the stats, especially if you are premenopausal, It also seems to affect bone density in anyone who manages to sustain their periods, any one decided against?
claire
For techy Hi Claire
You may find it helpful to read the breast cancer care fact sheet on tamoxifen. This can be read on line or downloaded from the following link:-
breastcancercare.org.uk//docs/tamoxifen__november
_06_0.pdf
I hope you find this useful.
Kind regards
On-line Forum Host
Breast Cancer Care
Hi Claire,
I have been diagnosed with Invasive Lobular Cancer. Had a mastectomy to remove 2 tumours and LCIS from my left breast. Three nodes removed - no spread. I am 100% ER+ and PR+, and full of LCIS in my right breast (will need another mastectomy in the next year).
Tamoxifen makes a big difference to MY stats, despite the side-effects I’m suffering from.
Jacki xx
Hi Claire,
Yes I refused it a month or so ago as my stats as it stood then was an improvement of 2-3% if I took it - so I weighed it up very carefully - I am premenopausal and was worried about things like bone density and depression etc so I refused it. This may change if my prognosis changes - I am waiting to have some results back from a lump removed from my neck last week (found the lump only two months after my mastectomy and before I would have started Tamoxifen) if that is cancerous then obviously things may change and I may have to reconsider taking Tamoxifen and anything else to improve my chances but as things stood I was confident of the decision I had made. Ask your consultant/oncologist for the stats for your particular prognosis and then you know what risk you are taking if you decide to refuse it. Some people have the view that every safeguard is worth the side effects but my view was that if my chances were not improved even moderately if I was to take Tamoxifen for five years I’d rather not take it - if the % improvement in my case was higher then I would have taken it and hoped for the best as far as the side effects were concerned. - but it must be a decision that you will not regret - it is so difficult. Even if I was to have recurrence no one can tell whether it was because I had not been on Tamoxifen so I won’t regret my decision.
Some women suffer no side affects at all from being on Tamoxifen some suffer very badly - I suppose the sensible thing for me would have been to try it and see but I even bottled out of that. Good luck with your decision - I know how difficult it is.
Chloe x
Tamoxifen I have reposted this on behalf of new user June
Kind regards
Forum Host
Breast Cancer Care
I have been on tamoxefin for 2 weeks, I am pre-menopausal, I have been getting hot flushes, which the oncologist told me about, but the last two days I have been woken from my sleep with really bad migraine headaches one I managed to get rid of with my migraine tablets, but had to get doc out today as I had taken 3 of them and it didn’t make even a little bit of difference , I’m not sure if that is a side effect or not, I read the leaflet that comes with the tablets and it doesn’t mention headaches of any kind, has anyone had similar side effects,
June
Hi
First of all June, my leaflet which i have just got out of a new box of tamoxifen mentions headaches as a possible side affect.
I actually wish i was brave enough not to take the tamoxifen. I have put on so much weight my joints i fear are becoming arthritic the pain is terrible. I have feel awful but then again it may not be all due to the tamoxifen.
I shall ask though at next onc appt in Oct what benefit there is in taking tamoxifen.
The flushes havent been too bad the last few days or maybe i am getting used to them.
Rx
5 weeks on! Hi
I have taken tamoxifen for 5 weeks now, constipation is a constant irritation, but I am getting to grips with that, fruit and water contantly!
I had hot flushes at night for the first few weeks but they have stopped this week, my hip joints ached like I couldn’t support my own weight for the first 2 days but that totally went away!
It still terrifies me, especially the book that #i ordered all about how awful tamoxifen is, but If it came back how could I face my husband?
Its not so bad for me, so far…i know, 7 weeks into this process I can accept it more readily!
Good luck with your decision!
Claire
I took tamoxifen for two periods of about two and a bit years each. I gave it up because it caused constipation, bad taste in the mouth and constant hot flushes which I did not want for five years. My prognosis was improved by 50% but as it appeared to be good without it (small grade 1 tumour and DCIS and no lymph nodes involved) I decided to give it up. I have to say that there have been pluses - no constipation etc, but also minuses - breast pain back, much more frequent and heavier periods.
I am sure a lot is down to each person as some people have no bad reactions at all. I found some of the initial symptoms (nausea and indigestion) improved after the first couple of months.
All trials of tamoxifen show it reduces risk for anyone with ER+ cancer by 50% of what their risk would have been and it also reduces the risk of getting cancer in the opposite breast (again for anyone with ER+ cancer)
Mole
Just realised I’ve said I took tamoxifen for 5 years, I didn’t - I took it for two periods which together totalled around 2 and a half years. I thought I gave it a fair trial considering the side effects and my personal prognosis (which is meant to be good)
Mole
I think there are many reassns for refusing cancer treatment on quality of life grounds, but before doing so its important to consider what the implications of doing so might be
Tamoxifen has, does and will save lives. Tamoxifen increases survival times…tamoxifen is one of the big reasons why survival stats for breast cancer have so much improved over the past 20 years. One problem is…as for all cancer treatments…no one one can quite tell for sure who exactly will benefit…which lives will be saved…so it might save you life, prolong your life…ot then again not make much difference…same for all treatments. For the people for whom it works (some of the er+ and pr+ cancers) tamoxifen is more of a lifesaver than chemotherapy (see Susan love article in this month’s edition of Mamm on mamm.com)
I haven’t had the choice of whether to take tamoxifen as i’m triple negative…I’d have liked the chance at least to have been able to make the choice.
Some of the stuff on the internet about tamoxifen is indeed wacky…and dangerous and misleading.
Yes we all have to think carefully about the treatment options we make…and review them all the time as we assess what the treatment is actually doing to our quality of life…and whether to try something , see if the side effects are tolerable for us, and then decide if not, to stop the tretament…knowing what the consequnces could be.
I’d say talk to your medical team…find out what difference tamoxifen could make to you…don’t make a decision based on rumour and speculation. Statistics are about groups of people…not individuals…many women live today because of tamoxifen…maybe this is is worth giving the drug a try?
Jane
Hello Jane,
Would you please help by advising me what does being “triple negative” mean?
The letter I had from the breast surgeon said “…the hormone test on your cancer cells is negative; therefore the only treatment is going to be radiotherapy.” I understood that tamoxifen would not work on me to prevent the cancer from returning. I am wondering, though, if I should have had two further tests for something to arrive at triple???
My operation was eight weeks ago, and radiotherapy is due to start next week (if my skin has healed enough from the allergic reaction I had) .
Elena
Triple negative…
means that your cancer tests negative for oestrogen (er), progesterone (pr) and a protein called her2. Hormone tests usually mean the er and pr bits, but you should also have had ther her2 test.
Have a chat with your doctor about this. Also many people with er- and pr- cancers do have chemotherapy as a precaution. so you might want to talk through why this is not being offered in your case.
best wishes
Jane