Thanks Geeps! Yes it’s all about balancing the risk. I have a lot of questions for the onco on 4th July. hopefully my partner will come in with me this time, instead of just sitting in the car!
I know they’re just doing their job the best they can but this ’one size fits all’ just isn’t appropriate any more, especially when they have so much evidence out there.
Have you read the book ’Estrogen Matters’. written by Avrum Bluming ? Try to - if you can . Lots of useful info in there .
I just did the predict test and with surgery, but no hormone therapy, I have a 91%chance of survival after 5 years. With hormone treatment and surgery I have a 92% chance???
Thanks very much. I eventually found it yesterday and did the test. Result was 91% chance of living fir 5 years with just the operation and 92% with op and hormone therapy!!! An increase of only 1%!! Unless I’ve done test completely wrong, I am, most definitely, not taking any form of hormone therapy again!!! I really think now that we were all conned into taking these pills!! Xx
My stats were similar but I had a lengthy conversation with the oncologist who explained the predict tool is about reoccurrence in the same breast. She went on to explain that AIs offer a 50% reduction in occurrence of another estrogen dependent primary cancer that’s either in the other breast or elsewhere in the body. For me that’s significant enough to try the drugs for as long as I can.
We all have to make our own personal decisions and it’s so tough as we know the impact estrogen has on our bodies and how we’re affected when this declines sharply. I’m still early days on letrozole and I’m taking lots of supplements and have other measures to help with symptoms so hopefully my symptoms remain tolerable. My oncologist also said if I could do two years on the drug there would be enough significant benefit and so I’m going with the flow.
Having cancer totally freaked me out, I think it scares all of us and so I’m listening to the experts as I really don’t want to relive this.
Breast cancer did however give me a kick up the bum and forced me to address my stress levels which were extremely high due to the nature of my job, I’ve also seriously cut back my wine intake as that was also too high. If anything I’m healthier and calmer than I was before.
Big hugs and I hope all goes well for you. X
It’s interesting - the 50% reduction with AI in new ER+ primaries in other breast / elsewhere were not explained to me nor was the fact that 2 years would make a significant difference . I might have been able to hang on if they had said try to give it 2 years ( there again maybe not) . My Surgeon also said it would be reasonable for me to stop hormone blockers if I didn’t get on with them as I was very low grade .
I also am trying to sort myself out - I don’t drink a lot but I eat when I’m stressed and the last few years have been very difficult and the weight has piled on ( I can’t really blame the Anastrozole for it!) so I’m currently working on improving my exercise levels / muscle to fat ratio / losing weight . Have lost 12 pounds so far many more to go but I’m feeling well .
I didn’t know that. I’m going to go back on Anastrozole after reading this!! Thanks fir info. I git my string painkillers yesterday so I’m hoping they work. Will take them , 8 a day, and I hate taking them, but if they allow me to walk a but further than the bus stop, I’ll b greeatful. I’m the same with food. I rejoined Slimmingworld and so far I’m 16 lbs diwn. Loosing wait will b better for our joints too. Keep up the good work! ???xxx
This is all very confusing! My oncologist never mentioned any separate risk reduction of another, different primary cancer! The term ‘Recurrence’ included all possible variations as far as I understood at my consultation. Why would he not point out the difference? I find it quite shocking that so many ladies have what sounds like inadequate information given to them and some start such potentially dangerous drugs before they even meet their oncologist! I will ask about the difference between ‘recurrence’ v new cancer risks…
No I haven’t read the book but I’ll look for it! Good luck with your oncologist meeting on Tuesday. I’d really advise you to take someone with you, to jog your memory - both for YOUR questions and for later processing of HIS/HER answers! Sometimes, the harder I TRY to concentrate, the more my brain does a go-slow!!
I do find it disturbing how I was expected to take Letrazole by my surgeon and BC nurses, (with carefree reassurances that I might not have any side effects), but after looking at my stats and hearing my concerns, my oncologist was entirely happy for me not to take them. He made no reference to them giving me any more protection from any new cancer as opposed to recurrence of the old one. That is something I will ask about.
Yes, tomorrow I see the oncologist and hope to have in depth discussion - long overdue. I am surprised and concerned by what you say - I understood by ’recurrence’ that meant ’cancer coming back’ ( primary source or otherwise)? But maybe that’s incorrect? As regards to 10-15 yr prognosis, I’ll be 76 next month - and usually these cancers ( in post menopausal cases) are very slow growing - so if it were to come back I guess I’ll take it with me to the grave.
I hope that he will agree to a six months break from Anastrozole and then I’ll get a chance to see if I feel better. Fingers crossed.
You’re right, I don’t think we’re often told the full story. All I can say is I was put on letrozole before seeing the oncologist. I was a wreck and didn’t take the meds as I was so very worried about them, mainly because of everything I’d read on here and then the various books I read.
I had to insist on seeing an oncologist as mine had been prescribed by the ACT as part of my radiation planning session. When I finally saw the oncologist we were prepped with lots of questions and my husband was great. He asked the question “if it’s so critical to reduce estrogen then why was my wife not put on these meds as a precaution after her sister was diagnosed with an ER positive cancer x years ago” the oncologist went to explain this has started to happen and there are active trials taking place. My predict score was very low - 0.5 and 1.2 over 5 / 20 years and so I’d effectively be the same risk of recurrence as someone who hadn’t had breast cancer and that’s where she mentioned that letrozole would give a 50% chance of recurrence- she even quoted it in a follow up letter to me.
it’s tough and I’m angry that I was even allowed to go on HRT. I was obviously already estrogen dominant, I just wish they’d done tests on me but they don’t. HRT is now the cure for everything but really it isn’t.
I wish I didn’t have to take letrozole and all the other supplements I now take to ease the symptoms but for me personally it’s a complete no brainer.
I do think it depends on where you are in the world / country as the local authorities / trusts have different views so do push your oncologist if you have concerns.
Another deciding factor for me was listening to an endocrinologist who is on the meds after her own breast cancer diagnosis - I will try and find the link.
I have a book called the ABC of Breast Diseases that was written years ago but it has photos in it of breasts with lumps before and after the person took letrozole or tamoxifen. I can only say there’s photographic evidence there that it does reduce the impact of visible breast cancer tumours.
I would say it’s highly likely it will also have an influence on individual cancer cells in the breast which are not yet visible as a tumour or tumours.
I was highly critical myself and still am about adjuvant treatments that have side effects that lead to other diseases that kill more women than breast cancer, but I have come to the conclusion that I am willing to take letrozole or another kind of AI inhibitor for maybe five years even if it may make little difference to my life expectancy.
My quality of life may be better as I saw some quite unpleasant pics of advanced breast cancer tumours. Shame I am so keen on research, but you don’t always find out what you want to know.
I think it’s great your husband went in with you and supported you. My partner usually waits in the car. But today I have very important appt with oncologist so I really want him to come in and take notes. I am a bit confused about your treatment with such a low predict score. I can see that if you have a family history they need to be cautious but it seems crazy. On the other hand, I have an ILC - which grows differently than the normal DCIS tumours, and I also have a family history- mother and three aunts - not all BC but female cancers and lung cancers. When I pointed out to my oncologist that ILC has a higher incidence of genetic origin and would like a test ( to protest my daughter ) , this was refused in Valencia on account of my age ( 73 at the time). Apparently, breast cancer is normal at 73!
But in your case, either the predict score is questionable, or you’re being over-medicated - as I’d have thought with such a low risk, why would you take an Estrogen Blocker? Please try to read the book ’Estrogen Matters ’ by Avrum Bluming - It has made me re-think my opinions of HRT as well as the AIs such as Letrozole and Anastrozole. I’ve just had an operation ( hip bone graft to mouth for later dental implants) and have now been diagnosed with a pulmonary embolism. I’m now on blood thinners for 6 months andI have had to cancel flights to UK ( ex’s 80th birthday this weekend ) but am hoping I’ll be ok to fly at end of August as my daughter is getting married . This I will have to discuss today with oncologist as I know that some of these meds ( esp Tamoxifen) list blood clotting as a possible side effect.
I also had thyroid problems and have lots of useful info on that subject if you’d like me to share it. Hashimotos’ thyroiditis and a small nodule- which I’ve managed to reduce by 2/3 over 2 yrs. Changing diet and supplements made all the difference. I need to go now but wanted to reply to you and wish you luck! and recommend that book!
If you want more info on healing thyroid naturally , I can help.
Yes I’ve been doing Yoga for a long time and it’s great . Unfortunately I had to stop my Vinyasa Flow class after a nasty fall that caused a rotator cuff injury and I stopped my Yin class after over- stretching my operated side ( didn’t hurt at the time only the next day ). I’m now nervous about restarting them in case I re injure myself . I still do a weekly Hatha class on Zoom which I love and practice a few stretches every day - I don’t know where I would be without my Yoga but sadly I’m still much less flexible than I used to be.