Tamoxifen to take or not to take? (I'm new here)

Hello

I'm 41 and was diagnosed with bilateral breast cancer in May and have just had bilateral lumpectomies and sentinel node biopsy with just two lymph nodes removed from each armpit. I will be starting radiotherapy shortly.

I have been advised to start taking Tamoxifen, but told it is my choice whether to take it or not. The predict tool cannot be used accurately for me, as it assumes one breast cancer, I have cancer in both breasts.

Can anyone please give me any advice or their experiences of tamoxifen, and would you recommend starting immediately or letting my body heal from surgery and radiotherapy before starting?

I would really appreciate any thoughts you have on this to help me make a decision.

Thanks in advance Alice

56 Replies

oldestnewest
  • I have a prescription for tamoxifen but was told to wait until my radiotherapy had stopped before taking it. Like you I was told its my decision as I have triple neg breast cancer and had a bilateral mastectomy. Its not usually given out for this but if there is a tiny hope of it stopping the cancer coming back I'll try it.

  • Hi Lainey66 have you looked at research into alternatives? Tamoxifen isn't usually given because triple neg has no receptors for it to work upon unfortunately - a bit like using a screwdriver to change a tyre. But triple neg can be beaten. I have a friend who beat it, even when it came back the third time. The most important weapon you have in your arsenal is to remain positive, it may seem impossible at times but positivity is indicative of better outcomes. Look to lifestyle changes in diet news-medical.net/news/20160... & hormonenegative.blogspot.co... exercise and sunshine. The body has an amazing resilience and capacity to repair itself given the right tools as Dr V tells you here breastcancerconqueror.com/n...

    There is research currently being undertaken that looks promising baltimoresun.com/health/bre...

    greenmedinfo.com/blog/resea...

    canceractive.com/cancer-act...

    cancerres.aacrjournals.org/...

    Live Kefir and dandelion also induce apoptosis in cancer cells but, as far as I know their efficacy in the treatment of breast cancer has not yet been studied but it couldn't hurt to add either or both to your diet.

    Wishing you success and happiness

  • Thank you Linlow. I'm going to check out the sites you have given. Much appreciated. I couldn't believe it when my Oncologist said they were prescribing it as it had already been explained to me. I'm definitely going to look at alternatives now. I've been 'nuked' to bits with 9 months of chemo and now 25 sessions of radiotherapy. I'll be glowing next 😂 A healthier alternative would be great. Hope all is good with you. Lainey x

  • You are welcome. I have been researching cancer alternatives since mother was diagnosed with metastatic breast cancer about 5 years ago (from 1999) so it is a subject close to my heart. I am regularly aggrieved with the information that her specialists share or don't share with her - like telling her it is perfectly OK to drink her favourite 'pop' - the one with one proven and another possible carcinogen in it - and that diet would make no difference at all to her chances of survival - but other than share the research with them there is little more that I can do :(

    Here is another diet link that gives a nice long list of eats and don't eats for triple neg. foodforbreastcancer.com/art...

    I was going to say I had forgotten a couple of options but this link here mentions them and a couple more that I haven't mentioned thetruthaboutcancer.com/tri...

    You might also want to get your thyroid hormones checked out, including T3, as the thyroid can be devastated by treatment and you have enough to deal with already. If you are having bloods done you might look at checking for mineral and vitamin deficiencies too, since these can go hand in hand with the condition/treatment.

  • Thank you so so much. I was getting on my consultants nerves by wanting regular updates on my tumor marker readings in my blood. Naturally I wanted to ensure that they are going down. He was concerned that I was putting too much in store on them reducing, seeing as the monitor the activity of the cells and not reduction of cells, a lower number in their activity suits me fine. I have started using hemp oil in cooking and salad dressings, as it is supposed to be good for you. I am also using the healthier recipes from The Happy Pear. Total lifestyle change. Although I have to confess I do still like a glass of red wine. Thank you so much for all your links you have posted up. xx

  • Hi Linlow, thanks for all the links, I will definitley check them out, I believe food is the forgotten medicine and a good balanced diet is vital to stave off cancer. I'm drinking dandelion root tea often, I know the evidence isn't strong, but I figure it can't do any harm. :-)

  • Hi Alice, the evidence for dandelion is strong just mostly anecdotal. Though it is currently in phase one clinical trial, these are only being carried out on patients with end stage blood related cancers (the ones that the medical profession has given up on). I suppose you have to start somewhere. Look for Dr. Siyaram Pandey on TEDx or youtube.

    Different parts of the plant have different chemical make up. The evidence isn't strong enough to suggest whether other parts of the plant would improve the efficacy of the root alone. If you have access to chemical free fresh dandelion you can add the leaves to your salads (before the plant flowers as otherwise they get really bitter) or make soup. You could also dig and dry your own roots, that way you know what processing it has gone through. The flowers, without the green bits, taste wonderful :)

    Check out chrisbeatcancer.com for loads more information on staying cancer free. And do check out what he has to say about rebounding chrisbeatcancer.com/rebound...

  • Thanks Linlow, so much to learn.....

  • I know - sorry. It is a lot to take in but I have been looking into this for nigh on five years so I rather have the drop on you there ;) You are better to do it at your own pace. That way there is more chance of stuff sinking in, rather than get overwhelmed and miss something important.

    Best of luck to you.

  • No worries, you're right, there is so much to look into that one thing at a time is the only way, as it is mind boggling and over whelming. Thanks for sharing so much, which I'm sure will lead me to more useful info.

  • Hi Lainey, thanks for your reply, that's interesting that you were told to wait until after your radiotherapy, all the best for your radiotherapy.

  • How will that help you if you're negative of hormone receptors?

  • Hi, I've been taking tamoxifen since January and I do take it with some trepidation as I don't like the sound of some of the side effects but then I dare not take it and risk a recurrence as then I would think that I hadn't done enough to help myself, a double edged sword! I'm seeing my oncologist next week and I'm going to discuss with her my risks of coming off it as I don't actually know how much good its doing me anyway but I have bad night flushes that wake me up, and my husband, lol x

  • Hi Cazlav, thanks for your reply, I think you have summed it up - double edged sword! I guess it all really depends how you individually respond to the medication and what side effects you get. Hope it goes well with your oncologist.

  • If it's been prescribed why wouldn't you take it?

    I took tamoxifen for 10 years, no side effects. Im still here so I'm guessing it's done its job for me.

  • Hi Heather, good to hear, thanks for your reply, and yes, why wouldn't I, perhaps I am over thinking it!

  • Hi I've been taking it for 19 months and at first I didn't think I could cope with the side effects. I got bad hot flushes, which have now subsided, and I get joint pain. But the alternative is worse and at least I'm still here to moan about the side effects!! Good luck with your decision. It's not easy I know but given your age (I was only 42) I would give it a go xx

  • Hello Dmhaynes thanks for your honest reply and well done sticking with it, it's good to hear that the hot flushes subsided, and you're right the alternative is worse. All the best sticking with it.

  • I took tamoxifen for 5 1/2 years and have now switched to letrizole, I also have zoladex injections. I am very happy that I took it as though I did get some hot flushes especially at night, the side effects were not that bad. I started taking once I had finished radiotherapy. Interestingly I think there are positive psychological effects as you feel like you are still taking some sort of treatment that could help. I took my pill early evening though I understand that it is worth trying different types of day to take the pill.

  • Hello Artemis-angel, thanks for your reply, it's interesting what you say, as I was thinking I'm better at dealing with one thing at a time psychologically, and as you say it would be the next stage of treatment if I started to take it after radiotherapy. I was wondering too about side effects and taking it at different times of day, so thanks for highlighting this.

  • I am on tamoxifen and don't have any side effects. I was advised to start taking it 3 weeks after finishing chemo. I would give it a go and if the side effects are too bad, discuss an alternative with your oncologist

  • Hi Lorraineam, thanks for your reply its good to hear that you don't have any side effects, we're all different aren't we and not statistics!

  • Take it! We are lucky to enough to have this drug and I've had minimal side effects, especially as I take it just before bed, stopped having caffeine and significantly reduced alcohol (special occasions only).

    I started mine straight after mastectomy and it made no difference to the radiotherapy treatment.

    My sisters have been advised to take it as a preventative measure too as there are two of us with breast cancer now.

    Hope all goes well. Xx

  • If your sisters do not already have cancer then do warn them, please, that Tamoxifen is a known carcinogen and that there are non-harmful alternative preventatives they could look into.

  • Yep my aunty did that and died, I think we will stick to tamoxifen that is well researched and proven.

  • Hello Emonty, thanks for your reply, that's a good point, treatment options seem to have moved on so much in the last decades we are lucky. Do you think you've had minimal side effects as you stopped caffeine and reduced alcohol? Hope all is going well for you too.

  • Hello Alice, yes it definitely helped as did taking it last thing at night and not in the morning (a tip I got from another user in this forum).

    I eat very healthily too now and drink at least 2 litres of bottled water a day, every bit helps.

  • ive been taking tamoxifen now for nearly 2 yrs. I was diagnosed in dec 13 at age of 40 i had chemo and radiotherapy. Tamoxifen started near the end of radio with no problems. I did have bad night sweats{not so bad now} and sometimes get achy joints but i find these side effects change if the actual suppliers name on the tamoxifen changes {odd i know} Any small thing to help with it not coming back is a good thing x

  • Hi Louisa, thanks for your reply, I had heard that side effects could be different possibly due to the additives in the coating. If you find a brand that seems to work for you can you request this brand from the pharmacy? You are right, good luck with it not coming back.

  • thankyou alice i didnt know that. I will try that x

  • Iv been on it a few months, came out in a rash in first couple weeks, but that went, did get the hot flushed but take another med to combat those, so only get a couple now, I wouldn't hesitate to take it , good luck

  • Hello Susan, thanks for your reply, sounds like you need to stick with it for a while to see how the side effects will be. Good luck to you too.

  • Hi Susan can I ask where you got your rash? I started with a rash on my face within 2 wks of starting tamoxifen but was able to cover it quite well with foundation or BB cream. I've not come across anyone on here before who reported a rash so would be interested in learning about your rash. Mel x

  • It was across my stomach and arms, but went after a few weeks, I was worried for a while but carried on , and it went x

  • Ok these rashes must be random then. Mine was across my cheeks and 6 months on is still there but more faint xx

  • I started taking it about 3 months ago, 5 weeks after my mastectomy. I Had HER2/oestrogen+ cancer in one breast. So far I've had no side effects. I do worry about the risk of uterine cancer but for me, it's a risk worth taking.

    I'm 38+ was diagnosed in Sept 2015 (@37 weeks pregnant). Hormones were the culprit in my cancer!!! They'll stop my ovaries working in a few months so I'll be having some of the same nasty side effects tamoxifen could have given me anyway :-(

    Best of luck whatever you decide.

  • Hi Arlenegalvin, thanks for your reply, good to hear that you've had no side effects, sounds like it is worth the risk.

  • I did have a bit of a sensitive tummy but that could be after chemo I suppose. Although it started when I started tamoxifen. It's ok now, I'm a bit more picky about what I eat though :-). All in all, I'd rather be on it than not.

  • I started tamoxifen after i had my results from surgery and before radiotherapy. I have no side effects... The hot flushes i get are due to menopause and i have learned to live with those. They are worse when i have not had enough sleep.

    The benefit of taking it far outweighs any side effects that you may get. X

  • Hi Maz, thanks for your reply, interesting to hear about the benefits of sleep. Good luck to you.

  • all-natural.com/womens-heal...

    Have you been offered any alternatives? cancer.gov/types/breast/res...

    Have you read 'What Your Doctor May Not Tell You About Breast Cancer' by J Lee?

    Search for Tamoxifen on this page drlisamallen.wordpress.com/... for another book you might find useful.

    Has anyone discussed life changes with you, how to go forward and how to prevent recurrence?

    Best wishes

  • Hi Linlow, thanks again for the links, I've had a quick look, it's interesting stuff, I'll have more of a read when I have more time. I'm making a lot of changes in my life to ensure I can boost my immune system and trying to reduce synthetic chemicals in my environment. I think this is easier for me as I understand all these things a lot better than I do Tamoxifen. I have had discussions with my team about how to move forward and they are very supportive. Thanks again.

  • I started Tamoxifen at the end of March after 2 x bilateral lumpectomies, bilateral sentinel nodes surgery and Rads. I was nervous of the side effects but took the plunge. So far so good. I get an occasional hot flush but at 50 years I expected them au natural anyway. For me it was why not take them and then evaluate after 3 or 6 months. Currently I will be staying on them. Hope this helps

  • Hi Jac, thanks for your reply, that's a really good point, nothing has to be forever does is, setting timeframes to reevaluate is a great idea. Good luck with it.

  • Hi Alice, a friend quoted me the following saying. "You are the CEO of yourself ". Brilliant reminder that we have choice and control. I wish you luck in whatever decision you make.

  • Hi Alice, I would say take it, my surgery was in October 2013, started onTamaxofen December before radiotherapy in January 2014, so far no probs and i've subsequently had 2 clear mammograms I wish you well x

  • Hi Jennymary, thanks for your reply, glad to hear you've had no problems and 2 clear mammograms, I wish you many more.

  • I would start taking it immediately. I did after my mastectomy. It is not a magic potion and some get side effects but it can help reduce the chances of breast cancer returning. I don't notice side effects as I take so many drugs for other things its hard to know what s.e. go with what drug!

    Good luck with whatever choice you make.

    Cathy x

  • Hi Cathy, thanks for your reply, and your positivity, good luck to you too.

  • Hi i started tamoxifen in march this year after a mastectomy. I have had the hot sweats both at night and during the day. I am also going through the menopause so have them twice as bad. They have got worse on the tamoxifen. They now wake me up during the night at least two or three times it can be more. I do get tired and achy but it is all manageable. Xx

  • brianna29 can you get hold of some organic lemons to make lemon water with? Along with their great store of vitamins and minerals lemons are also an excellent source of hesperidin. This is present in both the peel and the pulp but not in the juice so you need to use the whole fruit. Hesperidin, a flavonoid, has antioxidant and anti-inflammatory properties BUT also acts as a vasodilator that works like a miracle, for many women, to eliminate hot flashes and night sweats. It seems that it acts upon the hypothalamus to help regulate temperatures more easily. Although considered acidic, lemons become alkaline in the stomach reducing the body's ph. Water starts the alkalising process. You can also grate the peel onto salads and other dishes.

    A herb you might want to consider sage (Salvia officinalis). Known to many as the Hot Flush Herb, it exhibits a propensity to reduce all kinds of excessive perspiration.

    Make sure there is enough omega 3s in your diet but not too much omega 6, no higher than a 1:4 ratio. Also increase your consumption of magnesium containing vegetables. Limit coffee but drink more neutral or alkaline fluids otherwise the pH of your blood becomes more acidic as you dehyrate and makes hot flashes hotter.

    Hope this helps :)

  • Thank you for your reply. I will try the lemon. I tried a lot of different things when I started the hot flushes and night sweats with the menopause. I am willing to try anything. I eat a healthy well balanced diet as I have been a member of slimming world for the last four years. I have managed to maintain my weight loss for three years which I think has helped with my recovery. I will definitely try your suggestions thank you again x

  • Hello I am on tamoxifen don't start radiotherapy until end july

  • Hi Jenny, thanks for your reply, I start radiotherapy in August, how are you finding tamoxifen so far?

  • Sorry I thought it was a recient post yer just taking the tablet as told no side effects but then I don't no what to expect can't start radiotherapy yet due to restricted arm movement so I suppose they thinking tamoxifen on the safe side to help reduce any further spreading

  • Look into taking Indol Carbinol 3 and Red Clover as they do the same job as Tamoxifen and are natural products.

You may also like...