Breast Cancer Now Forum

Yes - it is confusing and having to make decisions without really understanding the ins and outs makes it all so difficult. I do hope, Surreyhillsgirl, that I haven't sown doubt in anyone's mind - that was certainly not my intention. I was simply suggesting that Ali should give herself time, get informed as much as possible and look after herself while she discusses her pathology with her oncologist and makes up her mind. ... View more

Hi Ali - Yes, definitely eat heathily and remember that if you are prescribed Adcal you will need to up your magnesium intake. Magnesium is required for calcium absorption. Without enough magnesium,calcium can collect in the soft tissues and cause a type of arthritis. Oh it's all so complicated!  Meanwhile -  keep exercising.   Hugs, Pip   ... View more

Hi Ali  - Pleased to hear your surgery and lymph nodes were good. So, if you are all clear, then why are you being prescribed Letrozole? Belt and braces job? Have you run your pathology through the predict tool? http://www.predict.nhs.uk/predict_v2.0.html Have you been given any advice about lifestyle / dietary changes or exercise? Take some time to make a decision; you are at a 'battered' stage and may need to have some space before moving to the next step. Read everything you can in books and on-line so that you can make an informed choice about whether you want, need or should take Letrozole. Then talk it all through with your oncologist.  Also they, or your doctor, will always help to find a brand that suits you.    All the best Pip ... View more

Hi Kate21    - Yes, I have read some of Chris Woollams articles and saw that, like Jane Plant, he advocates dietary changes and exercise alongside the medical treatments.  Personally I felt empowered as soon as I started thinking seriously about living a healthier lifestyle.  I must say that I found our over-worked and under-paid NHS to be absolutely fantastic every step of the way, through surgery, rads and medication.  I can't rate them highly enough but I do wish that someone/anyone on my cancer journey had put more emphasis on diet from the beginning so that I could have felt I was being more useful!   Hope all is going well with you. Best wishes Pip    ... View more

Hi Sue C.            Not sure how much advertising I can do on here but there is a certain supermarket chain beginning with T (every little helps) who seem to be taking over the world and they have an extensive 'free from' range.  My local one does an excellent coconut oil mature cheddar, a blue cheese, jalapeno & chilli cheese, a smoked variety and a coconut oil/soy soft cream cheese in addition to other cheeses I have not yet tried.  They also have excellent home brand 'free from' creme caramel, chocolate puddings and soya yoghurts in different flavours.  My T. shop stocks Alpro 'plant power' soya, almond and hazelnut drinks, yogurts, creams and other dessert alternatives.  Coconut milk seems to be readily available most everywhere now too.  When I first stopped eating dairy produce I lost weight, although I did not particularly need to.  However, 6 months on my weight has levelled off and I feel great.  I would not wish to make my diet a burden for anyone and, at a meal at someone's house, would not refuse to eat a dairy item but I certainly feel better for cutting it out at home.  Presumably cow's milk is naturally full of hormones to give a baby calf the best start in life - but I just feel better without them.  Interestingly, I have never been able to breathe really clearly all my life and since going dairy free I have had a noticeable improvement so, all in all, it has been a good decision for me.  Hope you find some dairy alternatives that you enjoy and I wish you all the best. Pip ... View more

Hi angabb54 - so pleased to hear you are feeling better.  Your consultant sounds reassuringly well-read.  I, also, have also moved to only organic foods and have cut out ALL dairy produce at home.  I don't like to cause difficulties if I am invited out to someone's house so I just go with whatever I am given on those occasions (except meat) Glad to say that I now feel well, am able to exercise without aches and pains and am looking forward to going into my dotage 'drug-free'.  I am convinced that too many years of HRT started my breast cancer off and I wonder now if the HRT also contributed to my over-active thyroid readings - but will probably never know the answer to that.   I am so relieved that my consultant supported my decision to stop taking the Letrozole;  it was certainly worth the hours and hours of internet research that I did before I saw him to request it. I still resent suffering nearly 4 years of side effects but, as someone else has already written on this forum,  I do understand why the consultants are fearful of doing less than a belt and braces job. Hope all continues to go well for you and, to all those who at the moment have to keep taking the tablets - try to do some exercise, eat heathily and be kind to yourselves.   Love Pip ... View more

Hi Angi - I think our situation is very similar - I am 63 and post menopausal so Tamoxifen was not suggested.  I also haven't heard of Alison's Exemestane but, in my understanding of the information on the eMC website, https://www.medicines.org.uk/emc/medicine/25862 Exemestane is usually given after 2-3 years of Tamoxifen so that's probably why it wouldn't have been offered to you or me. Do hope that the new tablet sorts out your aches and pains, Alison and that you are soon feeling an improvement - might be worth getting your vitamin D levels checked too.  Best wishes Pip ... View more

Hi Angi - Yes, researching diet and phytoestrogens is my way forward too. Luckily my local Tesco has recently turned 2 aisles over to 'free from' produce and the range of vegan cheeses and puds is amazing. Have you read 'Your Life in your Hands' by Jane Plant? She supported the medical team fighting her aggressive cancer by completely changing her lifestyle & diet - and lived a further 27 years to prove her point! You can buy a cheap second hand copy on-line from AbeBooks. It's worth a look. Your mastectomy surgery will have undoubtedly battered you about - I was offered wide local excision but, in the few days before the deed was done, I asked for an additional meeting with the surgeon to request that, if possible, I kept my nipple because she had been intending to remove that.   She said that decision would be made as she did the op.  I woke up to discover that she had managed it; it now points in a very quirky direction but has lots of character!  You will have gone through much more than I did so be kind to yourself and enjoy not taking the tablets. I'm sure you will soon be feeling so much better and would love to hear all your positive news in the future.    All good wishes Pip ... View more

Hi Angabb54 - Delighted to hear that you may be going letrozole-free. I actually typed up all my questions for my consultant and also took a friend with me to make sure that I didn't forget to ask/understand anything important. I also double checked that, even if drug free, I will still be seen annually by the oncologist and the mammogram team to reassure myself that they will stay on my case for the next couple of years. My tumour had been 2.7cms, 100% HER2 positive but with no lymph node involvement and the predict tool showed minimal long term benefit from taking the letrozole so it made sense to give it up and be free of the debilitating side effects. The half life of letrozole is quite short so you should be feeling an improvement within a couple of weeks. I stopped taking mine in July and 2 months later I am a new person....positively leaping out of bed in the morning and with no more incapacitating joint aches. I have also radically altered my diet - cutting out all dairy (to try to eliminate the growth hormones that are fed and injected into cattle) and I feel much better for hugely increasing my salad / fruit intake. My last problem of acid reflux (a side effect I believe was caused or certainly exacerbated by the letrozole and for which I refused to take omeprazole as prescribed by the hospital ENT consultant) has gone completely! I feel great and I do hope you'll be enjoying a similar improvement soon. I feel quite a rebel - messing up the pharmaceutical company's statistical data by becoming 'non compliant' but, hey, what the heck, I gave it a fair innings,over 3 years and suffered every side effect on the sheet, so I have earned my time off for good behaviour! Wishing you all the very best. Pip ... View more

Hi angabb54 - Have you run your pathology through the predict tool? http://www.predict.nhs.uk/predict_v2.0.html at least if you do that then you will be able to talk over the results with your consultant and more able to make an informed decision. When I found my predict results I decided to ask if I could be prescribed a lower dose of letrozole but the consultant actually agreed that I could stop taking them completely. Also - I understand that taking calcium (a bone density drug) is not good for the body unless it is combined with magnesium - it is probably worth doing some research on that before you meet your consultant too. All the best Pip ... View more

Hello MollyMoo Sorry to hear you are suffering the dreaded side effects too.  I am sure that there must be numerous folk who just sail through and don't have any of the aches, pains, hair-loss, blurry vision or acid reflux ..... but I wasn't one of them!  My first oncologist seemed so determined to 'go by the pharmaceutical book' that when I had done 3 years (out of 5) on Letrozole and I asked to stop them because they were making me miserable she said current practice required that I should continue to take them for 10 years now and she would also prescribe me a drug for depression!  That was when I seriously started doing my own research and trying to work out why most people (if not everyone) are on the same dose for the same period of time  - and yet, realistically, everybody has a different pathology.  I came to the conclusion that it must surely be for statistical research. When I heard about the predict tool             http://www.predict.nhs.uk/predict_v2.0.html                I was able to put in all my details bar one .....the Ki67 result (to say how aggressive the tumour was)  I had not been given that information.  When I asked my new oncologist for my Ki67 information he told me that I had not needed that particular test because I was low risk for having a recurrance.   I was staggered - why had I not been told this 3and a half years earlier?  Why was I on 2.5 mg of Letrozole a day which seems to be the same dose as people with a higher risk?  I had already decided that if he advised me against stopping Letrozole then I would request to be prescribed a lower dose. As it was, he agreed that I should stop taking the drug. My situation and pathology may be very different from yours but I would advise you  & everyone to be pro-active in the decision making process and don't just accept drugs upon drugs. Lifestyle and diet changes are vital too; Oh, how I miss the alcohol and all my favourite dairy products! I will still see my oncologist annually and can always go back onto Letrozole if necessary but at the moment I am happy to be labelled 'non-compliant' and I just wish I had done my homework sooner. Wishing you all the best. Pip ... View more

Hi Rosie14 Re: survival rates -  Sorry to hear you are suffering side effects. Nearly 4 years after my original diagnosis I had reached the stage of being prescribed drugs to treat the side effects caused by the letrozole.        I then came across the predict tool - http://www.predict.nhs.uk/predict_v2.0.html  - and found that, in my case, taking letrozole, which had caused me debilitating problems would only improve my survival by 1 year.  Armed with this information I worked on improving my lifestyle and diet then talked with my oncologist who accepted my suggestion that I stop taking letrozole. Naturally I am fearful but at least I no longer have a range of side effects to deal with. Wishing you all the very best. Pip ... View more

Hi Janee 1760 - You are mirroring my experiences exactly.  Can you tell me whether you have actually stopped taking the letrozole?  I am now in such discomfort with tightened skin and aching joints that i really can't face the remaining 7 years of my 10 year prescription.  When I told the Oncologist that I was depressed she prescribed anti-dpressants ......however, I chose not to go down that route, feeling that she had totally missed the point.  How are things with you now?  Has anyone out there had the courage to stop taking the letrozole?  I would love to hear all opinions.  Best wishes and support to all. ... View more