Hi I posted this earlier
Xx
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Hi Joanne: I wasn’t given rads - mastectomy I stayed flat (no nodes lvi pni) so no rads or chemo -
I guess if I ever had a recurrence rads still on the table x
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Thanks so much! I am determined to start exercising really seriously now!
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I didn’t know radiotherapy cuts recurrence by 50%. Was that from your oncologist? That is really reassuring. I guess that is the most likely way it will come back then.
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Yes exercise is thought to cut cancer recurrance by at least 30%. It’s a lot of exercise to get it that far, but every bit helps and its a lot more than 1 or 2 % that people get pushed to do hormone treatment for. Despite that, you don’t hear doctors pushing everyone to get daily exercise to avoid a recurrance. However, if a pill delivered 30% benefit, you’d never hear the end of it, strange that?
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Yes, thats the one, thank you!
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Maybe even more of us would drop out of structured exercise and careful diet?..
But it should be first point of treatment really - can only bring health benefits and enhanced quality of life.
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Yes it was the Oncologist - she said it cuts local recurrence by 50% xx
Thanks for letting me know!
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I guess the only thing to be wary of in using percentages is what it is a percentage of.
So my risk of recurrence was 3-4% without radiotherapy so 50% of that isn’t actually that big. Mine was brought down to 1-2% after radiotherapy which is why she gave me a choice as it wasn’t much if am improvement so yes it was a 50% improvement but still tiny figures
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That’s true and I can’t actually think what mine was now without radio though probably about 4% .
However that score was based on my lumpectomy / SNB results which was successful mode negative with clear margins but I had had an unsuccessful procedure - a VAE prior to having my lumpectomy during which a marker fell away and is still in my breast and the lump pinged out of the Radiologists grip and buried itself in a haematoma after it had been drilled into iseveral times. I was quite concerned that this might have scattered cancer cells throughout my breast . I’ve since had some reassurance about this but I don’t think I’m the only one that has experienced this worry about stray cells after lumpectomy but by having whole breast radiation any stray cells would have been killed off .
It’s a belt and braces type approach but in my view it’s a proportionate one - radiotherapy is not without it’s. risks both short and long term but it’s a non- invasive treatment that can be done in as little as 5 days in some cases as opposed to 5 to 10 years for oestrogen blockers and it has a much longer history of success as a cancer treatment than medication.
I
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I know i will probably get alot of negativity for saying this but not all doctor are right or have your best interest in mind…i have heard they have to go by certain guidelines or can lose their insurance also…my first surgeon insisted i take the chemo (red devil) so to shrink tumor to do a lumpectomy instead of a mastectomy that i wanted…i did one time and was so sick i decided not to take and got a second opinion…first thing he said to me was why? My type cancer didnt respond to it so i took it for nothing but lost all my hair…i went on to have a mastectomy and came on here to try and help with decision to take Als because of my disabilities i already have im concerned it will make them worst …no one is mentioning Anastrozole…but i am learning alot on both sides…
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So sorry you had that experience - that’s awful xx
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Sorry to hear about both your experiences @JoanneN and @delrose
I can see how both of you made your decisions.
In a similar vein, I couldn’t believe, with hindsight, that I was simply told to take Tamoxifen for 5 years without any discussion of the percentages which for me over 5 years was only 0.1% 
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I had a really interesting conversation with one of my oncologists today about hormone therapy. She confirmed that the higher the ER score the more likely she would be to recommend hormone therapy. She said 5/6/7/8 - the vast majority of oncologists would firmly recommend hormone therapy. But with ER3 or 4, a third would recommend it, a third would not recommend it and a thirds would say it’s reasonable to give it up if the side effects are hard to cope with. So far one oncologist has told me it’s fine to give it up, and one said I could give it up if the side effects are difficult. Clear as mud then!
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I am exactly the same. I was ER3. I had three locum oncologists and none of them said I should take anything. Now (a year later!) I have got a permanent oncologist and he has persuaded me to try tamoxifen for two months. I will see how it goes but I have a feeling that in my case the risks will outweigh the benefits.
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You’re right to be wary I think. As a retired Maths teacher I know that risks and expectation chances can combine in quite complex ways. Furthermore the cancers necessarily are typified rather than identical, patients responses can only be typical according to the samples for the drug trials and subsequent use. I’m sure the statistical models capture what’s going on as well as can be done but it’s not an exact science for sure!
Handling risk is difficult, especially if it’s about something that is scary or really matters to you.
My own approach has been to have everything offered for the last 2+ years as I’ve grasped for myself the simple message that there’s a very high risk of return. Following lump surgery, EC and Paclitaxel, Radiotherapy, axillary clearance I’ve got 2 more zometa infusions and 10 months more of abemaciclib, which I take with letrozole. I have been mindful of possible harms from the treatments themselves, but hope to recover well from them.
After April 2026 I’ll just have 3 years of letrozole left according to current prescription and that’s why I’m on this thread as I’ll find out which of my ills I can lay at the door of letrozole alone (most of them I think!) and and see how I’m feeling and doing. So far I’ve taken the view that I’ll sign up for what’s been offered as the time do it is now and hope that I can in time revert to sort of how I felt as a 70yr old on no prescriptions at all. I’ve taken care with diet and walk a lot, could do more exercise if I weren’t so tired…
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The podcast with menopause and cancer and oncologist Dr Clare Macauley is now on YouTube discussing endocrine therapy that I mentioned previously.
At 9 minutes Dr Macauley says at least 50% of patients don’t complete their treatment so it’s so important to have this thread for support.
At 15 minutes they talk about those that chose to stop and their mental anxiety about stopping and fears.
It’s a great watch
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