I have been browsing this site for a while as I have some questions about Tamoxifen and thought I would probably find my answers somewhere on the forums. Have had to admit defeat though! I have been on Tamoxifen for nearly 3 months. Side effects include mood swings so I wonder whether I can take Evening Primrose Oil? I used to take it pre-bc, but havent taken it since diagnosis. I also took Silica and Magnesium OK, both of which I am also unsure whether I can start taking agian. I followed a link someone else had posted on here and couldnt see any contra-indications for any of these, but I just need further reassurance that I am allowed to take them!
My other question is about the ER score. My ER score is 7/8. I have no idea what this means and cant find any info anywhere. Is this a high score which means that there is more likelihood of a reoccurence as opposed to someone who has a lower score of say 1/8? Should I be looking at my diet regarding maybe switching to organic meat and dairy products (I am thinking that organic animals shouldnt have been fed hormones)?
Or, am I thinking about all of this too deeply and worrying unncessesarily? Any answer / guidance appreciated!
Many thanks ladies
Patchit
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Hi Joan
In terms of your score, I am 8/8 for oestrogen and 7/8 for progesterone, I was told this was “fantastic news” as it means the cancer is almost entirely depended on hormones and of course Tamoxifen will stop it. Regarding diet animals reared in the uk are not given hormones so shouldn’t make any difference. When I was at the BCC Younger Womens forum in June a dietician came to speak to use and advised that the only credible studies had shown that dairy was a benefit, the opposite of what most people think, she also said there are a lot of theories out there regarding diet (I have a couple of books myself) but there is absolutely no evidence to support any of it and to stick with the sensible approach.
Sorry, can’t help you with the supplements, have been on Tamoxifen for 3 weeks and so far having no problems, as for thinking too deeply and worrying unnecessarily, I over analyse everything, par for the course I think at this stage x
Hello Joan,
Your high score is very good news, in that you know it’s worth taking the hormones even though you get side effects. Might be worth asking if Fareston would be an alternative for you, since it is supposed to have fewer SEs.
I’m reluctant to take hormone therapy, as my cancer is only weakly ER positive and I am a high risk for osteoporosis. Still, not worrying too much as yet because I still need to get through my chemo and mastectomy.
Good luck,
Margaret
Hi Joan,
I googled tamoxifen and primrose oil and a thread from this site came up, tamoxifen and star oil / eve prim oil. There were a number of posts that said it was ok to take either.
All the best,
Gaynor x
Hello Patchit,
I was diagnosed 9 years ago and now on Letrozole after 5 years of Tamoxifen.
I only found out in April this year what my ER score is, it is 6/8 and I only found that out as I was querying with my Onc why I should be on Letrozole for 5 years instead of 3 as originally advised. He said he would not advise me to stop taking it even though I have been on Letrozole for over 3 years.
With regards to diet I just eat sensibly, I still eat meat, have a small amount of dairy normally but I have oatmilk on my cereal. When I was diagnosed I asked my Onc about diet, vitamins etc and he said that I should just eat diet a normal diet. I guess the thing is to watch your weight and get some exercise and keep as healthy as possible and the weight I put on whilst on Tamoxifen started to go as soon as I stopped the drug.
Hazel
Hi I think I have read somewhere that evening primrose oil may have a negative effect on tamoxifen. Regarding organic dairy and meat it’s not the added hormones that are a problem and correct when Chascat says they are not added to our meat and dairy however it the natural hormones that are passed into the food chain, eg cows are pregnant and have inflated hormone level which is ultimately passed onto you when you eat dairy products. Hence advice to avoid all dairy and meat to not to inflate your hormone levels. The same with water you are drinking everyone else’s contraceptive pill remains that stay in our tap water. All perfumes products, shower gel shampoo etc and make up and perfume itself carry chemicals that could effect your cancer. It’s a hard world to live in when you worry about everything you eat and wear etc… Do what you feel you can manage
Thank you ladies for your replies. I am certainly clearer in my mind about the ER score now. I was diagnosed a year ago now, but there is so much information to get your head around, I am still struggling at times! Lydia, thanks for the info about hormones in animals, probably the best thing to do then is to try to stick to eating meat from animals which has been reared in the UK. I do have a fairly healthy diet so that’s the best I can do to help myself, I guess. Other than getting some more exercise, which is on the agenda after a holiday!! Thanks Gaynor for the info about evening primrose oil. Hazel, its good to hear that things are going well for you 9 years down the line. Long may it continue! Margaret, I am continuing to monitor my SE’s from Tamoxifen, good luck to you with your on-going treatment. Lucy, thank you for the links.
Thanks again ladies and wishing you all the best
Joan xxx
Thanks Carrie, you are right, there is an awful lot to consider! I guess I have to do what I feel comfortable with while keeping things in proportion. I would never have thought about things like tap water or increased hormone levels in dairy from pregnant cows. I have switched to organic milk and yoghourt, which is, of course, a really easy thing to do. My diet is fairly balanced anyway, but the points you make are certainly food for thought!
All the best
Joan
Carrie, when you say “Hence advice to avoid all dairy and meat to not to inflate your hormone levels. " i was wondering where you have been given that advice? the current advice and guidelines from all the major cancer organisations and also the medical profession is to eat a well balanced diet, to aviod obesity and to limit Alcohol. There is absolutely no proof like Chascat says above that eating “Dairy or Meat” has a detrimental effect on BC ,
Regarding hormone levels and oestrogens there are oestrogens in just about everything unfortuneatly, including our tap water, the carpets we walk on and just about every other imaginable thing you can think off so it would be extremly difficult to aviod all oestrogens . unless of course we are all lucky enough to go and live on a dessert island somewhere.
EPIC is the largest study ever conducted to date re Diet and Cancer , " EPIC is a long-term study of more than 500,000 people in ten European countries. Around 90,000 are British men and women, including about 30,000 vegetarians, recruited by Cancer Research UK groups in Oxford and Norfolk.” EPIC concluded in their Aug 2010 Podcast "But for the two most common cancers – breast cancer in women and prostate cancer in men – there are no strong dietary links." cancerresearchuk.org/cancer-info/news/podcast/transcripts/august-2010-podcast-transcript
Joan, i think at the end of the day everyone has to do what they feel comfortable with , and it certainly can be very confusing however unfortuneatly there is a lot of Myths and Incorrect information online which can frighten people unessasarily about eating certain foods after a cancer DX, often these websites are not very reptuable and give out misinformation to vulnerable people with cancer, I would say stick to the reptuable sites like CRUK/BCC/MCMillan/AICR ect where you will find the most up to date and “reliable” info and advice re Diet and BC, i think we all have enough to cope with without worrying ourselves even more about what we eating especialy when there is absolutely no evidence to prove that these things are harmfull to us.Life is for living! Regarding suppliments ect Sloan Kettering Cancer Center have an extensive database with lots of info re all the different herbs/supps which you might find helpfull. mskcc.org/cancer-care/integrative-medicine/about-herbs-botanicals-other-products All the best Linda
Thank you Linda, you sound like the voice of reason. I am very wary of surfing the internet for information, In fact I have never done that and stick to BCC or Macmillan site mainly. I have already looked on the SKCC site, following a link which was posted on here previously (which may have been posted by you?), and as far as I could tell, the supplements I was asking about did not show any contra-indications. I do agree that we have to do what we feel comfortable with and that ‘life is for living’. I was just confused about the ER score and wasn’t sure what mine meant. There is so much information to take on board after the bc diagnosis!
Hi again Joan, There def is a lot of info to take on board when you get a DX with BC, it feels like a monefield at times doesnt it, i remember how daunting it all seemed when i was first DX with BC 5 yrs ago and it was a very steep learning curve for me,
Just wanted to add like Margaret says above, that having a high Er score is very good because it means that Tamoxifen will be very benificial for you, the higher the score the more benifit you will recieve. I was only weakly Er + with my first DX though i still took Tamox for 2.5 yrs before switching to a AI untill i was re Dx with a new primary in my opposite breast in Marchg this yr, This time my Er score is 6/8 so much higher and am now back on Tamosifen too, Tamoxifen is an exelent drug and is still considered the Gold Standard in Er+ BC Patients and has no doubt saved many lives in the last 40yrs.
Sometimes any SEs can be improved or reduced greatly by switching brands, not sure if this might be a option for you if you find the SEs are too troublesome , but might be worth trying, i found the best brand of Tamox for me was APS which has now been taken over by TEVA though i know other ladies find others better for them, its a bit of a trial and error sometimes untill you find the ones which suit you best.
Hope you are doing ok and keeping well. and good for you for not googleing ,i know how hard it is not too sometimes! lol.
Best Wishes to you
Linda x
Hi Linda
I think I have just got to the stage where, after finishing active treatment (mx, chemo & rads), I am now able to digest information better and can begin to look to the future a bit. Obviously I want to do whatever I can to help myself, hence my questions! Although I am now a year on from diagnosis, its been a hard year, as I am sure you know, and I just sort of feel that I can now start to sit back and take stock.
I hadn’t really understood the implications of the ER score and as its is all tied into taking Tamoxifen (or not), I haven’t researched it until now. Obviously I am really happy that my score is high!! Its early days for me yet, I’ve only been taking Tamoxifen for a couple of months, so the SE’s are probably still not established. Its nothing I cant cope with yet, but its good to know that there would be ways of coping if things did get hard to tolerate, or if OH got totally fed up with me biting his head off sometimes! Lol!!
Sorry to hear you have had a second diagnosis, you have been through the mill this year too! I hope your treatment continues to go well and wish you good health into the future. Many thanks too for taking the time to post.
With very best wishes
Joan xx