Hi
I met with my surgeon for my post op results meeting 2 days ago .
Was so relieved that nothing had changed from biopsy findings . Small , grade 1 IDC, ER 8/8 HER2 negative - clear margins and nothing in the sentinel nodes . Been such a stressful time but in reality only 6 weeks from diagnosis to results.
I had been told my expected treatment would be 5 sessions of RT and then the dreaded Letrozole but was surprised to hear that at the MDT meeting they had discussed the possibility of me not needing Radiotherapy at all .
Chance of recurrence very low apparently ( Iām 66) . He said itās not news he gets to deliver very often . Iām concerned that if this is the advice given once I see the consultant radiologist ( no appt as yet ) and I donāt get on with Letrozole I will regret not having RT.
Was told it needs to be done within 12 weeks of surgery .
Predict3 shows very little benefit of RT but also very little benefit of 5 years hormone therapy.
I welcome any advice or experience of a similar situation.
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Hi @sweetpea1 I had a small Stage 1 Grade 1 IDC with some low grade DCIS in the same place, came out together measuring 15mm. The only difference to biopsy was the additional DCIS so lump size went up from 9mm. No node involvement, no LVI, clear margins. I had been told at biopsy results that Iād have 15 days rads and 5 years endocrine treatment. That was immediately changed to 5 days rads once the histology was confirmed. I had rads 10 weeks later, Monday-Friday one week, it was easy peasy. Had already started Letrozole 6 weeks after surgery and did reasonably well on it but after three years, the cognitive impact was just too much and my oncologist grudgingly agreed, because I had had rads, that I could discontinue the drug. My Predict scores show a minimal impact of both treatments on both v2 and V3 but, I figured it was worth the āchuck everything at itā approach at the time. This was all between July and November 2022, when I was 66, so things may well have changed in the intervening three and a half years and the āone size fits allā approach may not be quite so prevalent amongst oncologists. I gave up endocrine treatment three months ago aged 70 as I reckon, at my age, there may be a host of different health issues lining themselves up for me to deal with over the next few years and, if so, I want my brain to be as clear as possible. I still have days when I wobble over that decision but have two more annual mammos to go before being signed off (my dx was after a routine mammogram) and then I will definitely do the elective mammograms thereafter, so hope to nip anything in the bud should I get a local recurrence. If I get mets, well, Iād have to go back to the AI. Why you havenāt been offered rads is a mystery to me but then I am not a trained oncologist so defer to their judgement.
Thank you - sounds very similar to me
10mm incl a bit of DCIS
I havenāt had my treatment meeting yet but the surgeon said that current thinking is moving towards suggesting no RT in cases like mine .
Iām leaning towards having the RT for reassurance in case I canāt handle the Letrozole side effects . Surgeon couldnāt guide me but I felt that he wasnāt keen on 5 years of potential side effects for a 0.4% benefit
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Ok well, in some ways, itās good to know that theyāre cognisant of over-treatment and are prepared to modify the NICE recommended treatment programme for er+ accordingly. My rads programme was ten weeks after lumpectomy as hospitals were still catching up after Covid (I had to attend six different hospitals across two health authorities to fit everything in) so I am hoping the stray cells from surgery were still in the breast, to be mopped up. I think you need to be confident that your treatment plan has been optimum so, if, at the meeting, they can explain sufficiently why you donāt need rads then happy days. Good luck with the AI, many have no problems with it at all and had my Predict scores been worse, I would have continued.
Hi
I have told radiotherapy is gold standard. I am terrified of it.
I am considering not having it
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I just got a copy of my referral letter - says Iām a suitable ā Prime ā candidate
Seems to be something about missing RT if over 65 , low grade tumour etc
Iām scared of not having it and then regretting it if I canāt hack Letrozole for 5 years
Iām meeting consultant who deals with radiotherapy next week to discuss options
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I understand how you feel as I didnāt hack Anastrozole for very long but did have radiotherapy . Although the treatments were quick and painless radiotherapy wasnāt straightforward for me either as I had almost 3 months of fatigue and it took about 8 months for the redness and swelling in my breast to go though it wasnāt painful . I have also been told that it goes on working in your body for 6 years and that you can get radiotherapy related fatigue anytime within 5 years of having it . If I were you I would try to pin your team down - ask them how much difference it could make if you were to abandon the Letrozole , they should be able to run this through Predict and give you a rough idea though there are never any guarantees . To me the 5 years seemed like an insurmountable amount of time - itās hard to commit to taking something for that length of time . As has been said already many people do take AI therapy with very few or no problems - there are sometimes options if people are struggling it sounds as though you need more information. Xx
Nothing to be terrified of honestly. Itās absolutely painless and lasts A few minutes a session