Not at all, Geeps ! You are so so right.
Throw all manner of drugs at the continually growing side effects, as long as you could add to the pro-oncology stats. Harrumpf !
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Donāt be daft @Geeps of course I didnāt think you were calling me a misery-guts, if anything it is me reflecting what I think of myself. Iām not sure if the affects of the Letrozole are wearing off (been off it for 4 weeks I think and have been āallowedā 8 weeks - jury is still out on whether to carry on with it) but Iāve been feeling a lot less down in the dumps over the past few days. Iām actually looking forward to the hordes descending next weekend. So, Iām focussing on positivity which will be in evidence a week today when I will be singing and dancing to an aging boy band as if they are still teenage heartthrobs and we are still knicker-wetting 14 year olds.
PS Iāve just seen youāre two months younger than Seagulls which must make you October 1955? Me too.
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Oh Iām so glad @Tigress
But silly meā¦Iāve just seen Seagulls said 2025 and Iām 70 October THIS year! So Iām a year older 
1954 vintage.
Where did the time go???
You say youāve been āallowedā 8 weeks offā¦are they going to āallowā you any choice in the matter after your break (which isnāt long to get rid of side effects Iād have thought)?
My oncologist said I was low risk after radiotherapy (4% which AIs would only reduce to 2%) and once Iād said I really didnāt want to take them if possible because of their side effects, he said I WOULD get side effects and didnāt even suggest I TRY them.
I was told he is the expert on Letrozole at the hospital.
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But still October @Geeps?
Re the Letrozole, obviously if I donāt want to take it, they canāt make me but Iād like to have an adult discussion with them about it. The reason they are so keen for me to pursue it is because my tumour was Er+ 8/8 Pr+ 6/8 so highly responsive to endocrine treatment. Obviously if I got another primary it could be completely different histology but if the original has spread then Iād be back on the Letrozole plus other stuff. That is how it was explained to me and because I didnāt get the joint pain I thought I was doing well on it but it has spiked my blood pressure and the worst part is the cognitive decline and low mood. Not my natural state at all. I canāt remember exactly in which post I saw this but another woman on the forum reported that she asked her oncologist if she would take it (I think Tamoxifen) and the gut reaction was āno, quality of lifeā then went on to qualify what sheād said. So ā¦
We all seem to have different experiences with oncologists! I was never told any figures on how strongly ER positive my tumour was. Iād never heard mention of such a thing till I saw it on this forum!
My oncologist just went on percentage risk of recurrence after radiotherapy. Like I said, once I said how I REALLY didnāt want menopause symptoms again as Iād already done it once, and I also have an active job, he didnāt push it - he didnāt even mention it again. I had told him the nurses had said try it out - I might not get symptoms, but that I was still concerned, and he interrupted me by saying You WOULD get symptoms! He totally accepted my exclamation that a 2% risk was to me, a no-brainer!!
Anyway, he went straight on to explain radiotherapy and made sure I understood everything about that.
After radiotherapy the radiologist started to give me info on Letrozole. When I interrupted and said Iād discussed it with the oncologist and wouldnāt be taking it she wouldnāt believe me and even asked if it was one of their own oncologists Iād discussed it with!
We all have a small risk of recurrence whether we take the drugs or not. Were they able to eliminate all risk Iād probably try them out! To take the drugs AND get BC back would be a double whammy aargh. If I get it back it could well have nothing to do with lack of an AI but Iāll never know and wonāt regret any decision.
Low mood and fuzzy brain for life would be a worse risk to take for me.
Yesā¦Octoberā¦the opal month?! My grandmother apparently had a beautiful opal ring but she was superstitious and gave it awayā¦before I was born!!
You are all 12-14 years younger than me! I will be 80 next Feb. But I am still determined to be as active as I can-not running or formal exercise, etc, but running my B&B , meeting people, and entertaining, which helps to keep me engaged, and active. I have been taking the Aromasin, but it has caused very dry wrinkles skin, soo I may well ditch it. The oncologist at my last appt, said, when I was saying about side effects, āoh youāll be fineā. I was so cross-I said, Iām sorry, but you canāt possibly know how or what I feel! I just think the male oncologists, just expect us to capitulate and follow instructions.
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I met an oncologist earlier this week and he said people vote with their feet aka non compliance when it comes to aromatase inhibitors (letrozole, exestamine, and Aromasin are examples) due to the many side effects people experience. He said that of the three, Letrozole reduces oestrogen the most, so anyone who would like to keep some oestrogen could move to one of the others if they can find a sympathetic oncologist. Mine, a woman just droned on about how AIās are āwell toleratedā - compared to what? And does she know patients may not let on they are not taking them. Only the used prescription packets are proof
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Iād like my Oncologist to know everything and makes the best decision for me but I realize that Oncologists have statistics and they make decisions based on statistics, they try to adapt based on side effects reported by patients or by choice made by patients. As a patient, itās hard because I donāt want to be a number, a statistics and although I trust my Oncologist is doing her best - based on her experience and knowledge - I will make it my mission to challenge her to get the best care for me.
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I stopped taking Anastrozole die to the side effects and low risk / benefit ratio for me personally . I had heard that itās been licensed as a preventive for women who are at high risk of developing BC . I would be interested to know how many of them tolerate it .
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Thatās interesting. Iām on Anastrazole ( 4 weeks) . Suregon /onco prescribed it. Said not much difference between them.
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I have been taking Letrozole five years five more to go . It truly isnāt a problem walk 30 miles a week no sleep issues took biphosphonates 3 years as well . I think thatās the case for most of us
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Letrozole saved my life. I was living in spain when I was diagnosed. dueto complications with chemo infusions I was in and out of hospital. For some unknown reason I managed to contract pneumonia. All my organs were shutting down and I had to be put in an induced coma for 2 weeks! They didnāt think I would wake, I did. I am a fighter. The cancer Stage 4 with mets to liver and bones had taken over so badly that they gave me a week to live. They tried Letrozole as a last resort as I was too weak for any infusions. Here I am almost 5 years later 
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Wow, what a story. Letrozole does seem to be extremely powerful which is presumably why so many women get significant side effects on it. I do hope that youāre living your best life in the circumstances after an horrific experience five years ago. Hereās to many more years!
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Iād be interested to know how you qualify your last assumption?
Brilliant ! A great outcome. Very happy for you. 
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Letrozole (Femara) | Cancer information | Cancer Research UK.
And this is only anecdotal but I am close to six people whoāve had breast cancer. Weāre all on endocrine therapy and none of us have issues. And those six people know other people with breast cancer and they report the same things. Itās common to have severe side effects but thankfully most people donāt.
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Hi Kay0987
Lucky āmost peopleā ! I wonder if there has ever been a study to illustrate the split across āno SEsā, āmild SEsā, and āsevere SEsā of each type of drug, and what it is that makes the difference from one person to another. Now that would be interesting. Iāve never heard or seen percentages discussed. A bit more scientific and evidential than āmost peopleā (no offence, and acknowledging that you did qualify your response as anecdotal).
Apart from the side effects that reduced my quality of life so much, I also dreaded the not-so-common but devastating conditions the endocrine therapy could cause. Didnāt want to risk those just for the very small percentage of risk reduction the endocrine therapy gives you.
Iām amazed but happy for you all that you have absolutely no issues. Remarkable indeed, considering the oestrogen starving.
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I know 5 people on letrozole ā¦ all jogg8ng along fineā¦be better off without it mindā¦ive got another 7 yearsā¦would be terrified not to take itā¦i had a recurrence on tamoxofenā¦ but told this should work betterā¦ i need to know ive done all i can ā¦but everyone is different
Hi cat15
Iām sorry you had a recurrence. But doesnāt that just serve to prove that drugs are not necessarily going to save us. If you have now been given something that āshouldā work better, why werenāt you given that the first time? And in any case, 10 years of diminished overall wellbeing for the small chance it might have an effect is a pretty rough trade off.
(Just playing Devilās advocate.)
I have found that oncologists (3 of them) are good at terrifying people into taking their drugs (it is their raison dāetre after all, and therefore their bias, never mind the fact that drugs are a lucrative business for everyone in the supply chain, including sometimes the institutions who prescribe them) but none of these doctors ālooking after my healthā have even alerted me to the possible serious/fatal dangers listed by manufacturers or organisations like NICE, and have never been open to a serious discussion about (much less, accepting of) the option of going without. Why is that? They shut down that avenue of exploration which, shamefully, leaves the reluctant patient unsupported. They also (so far) have refused me certain tests or an MRI about an area of concern, and havenāt even offered any active form of monitoring, now that I have no breasts left to screen. If itās down to me to flag up concerns ā¦ and then they wonāt follow those with a complete investigation, is it any wonder I donāt trust their attitude. Yes, everyone has a different focus.
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No idea what makes the difference but I have read that you can kind of predict your response to menopause based on your motherās. So maybe itās an inherited thing. My mother had no physical issues with menopause although she did mentally. I am on an anti-depressant that helps with the mental and like my mother feel fine physically. According to the report I posted about 10% of people seem to experience severe side effects.