Hi everyone
I’m new to this forum and struggling with whether I’ve made the right decision about no chemo. I am lucky that my breast cancer was found early. I’ve had a MX and ANC. Chemo was going to add 2% benefit and hormone therapy 5% so I decided no to chemo and am having hormone therapy. But what if it comes back maybe chemo would have stopped it? Has anyone else faced this dilemma?
Hi chaffinch
I faced the same decision. My onc told me that the increased benefit of chemo for me would be 3% and it was up to me whether I had it or not (very helpful!) My BC was strongly hormone receptive so I decided to go on Tamoxifen and Zoladex together, since the onc said this is nearly as good as chemo. So I didn’t do the chemo, but I did do the rads. I couldn’t face the awful side effects of chemo for so little benefit.
I got a 2nd opinion from another onc because I wasn’t impressed by the first one and was very reassured when onc No 2 said she wouldn’t even have mentioned chemo for my type and size of tumour and would have just put me on Tamoxifen on its own.
So now I’m comfortable that I’m taking a reasonable balance between risk and side effects, whilst accepting that if I do get BC again that it may be as a result of this decision.
Sarah
Hi Cheshire Cheese
Thanks for your comment. It’s good to know you felt the same. I had hoped for a discussion with the inc but it was more here is the info and make up your own mind. It wasn’t helped by the Registrar, who i spoke to first not understanding statistics!
Hi Chaffinch
If anything I had the opposite problem - the 1st onc asked me if I wanted the maths and when I said yes quoted far too many numbers at me. What I had really wanted was the key statistics, with him adding his clinical judgement and experience to advise me what he recommended for my type of BC. I failed to get that from him which is why I went for a 2nd opinion. The 2nd onc went all through the pathology report with me, explaining what the different results meant, which is just what I wanted. She also commented on the Ki-67 result which no one else had mentioned, and said that that is a very good prognostic indicator for the likelihood of recurrence and because mine was low, she was confident in saying don’t bother with chemo.
Sarah x
i was told no chemo if the difference was only 2%, which it was for my first tumour (i have a gene which increases my risk of cancer and have had it twice but this isnt the case for 95% of people with BC)… my first tumour was a grade 1, stage 1, er positive, 13mm, IDC… its almost 5 years since i was diagnosed and i havent had any recurrence from that tumour and my prognosis from that was 96.5% survival by 10 years compared with about 98.5% by 10 years who havent had caner at all.
and having chemo doesnt guarantee the cancer wouldnt come back as nothing can be 100%
Lulu xxx
Hi Cheshire Cheese
What is Ki-67? Is it to do with proliferation rate? The onc mentioned proliferation rate and said it was boderline. I had three small tumours and they varied a bit.
Chaffinch
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Well for me that 1% or 3% was mine-my extra chance of life,my chance to be one who walks away.I bit their hands off for chemo when it was offered.I asked my surgeon and my onc,'What would you advise your wife/sister/mother to do in my situation[grade2 tnbc no spread to nodes and no vi]?They both said,‘I would tell her to have the treatment every time’.
Good luck
Valxx
Hi Chaffinch
Yes, Ki-67 is a marker for proliferation rate, mine was 10% which apparently is good. It’s also worth being aware that the American AdjuvantOnline software that they all use to calculate survival rates doesn’t take account of Ki-67.
Your age at Dx is also a factor in the chemo decision, the younger you are, the more chemo is indicated. I was 50.
If I had been triple negative like horace I would have been first in the queue for chemo, but being strongly er and pr+ meant the hormone therapy would be effective.
Sarah x
I will always wonder if I made the right decision. Diag aged 55 with tnbc grade 2 stage 1 Tumour less than one centimetre no node or vasc invastion. I was told that all things are taken taken into account in treatment programme, I was advised by onc that percentage difference in a 10 year survival was less than 2% if offered chemo. I was not actually offered chemo (they said I can have it if I wanted it) so at the time I opted to take onc advice and have rads only. I was actually releived at not having chemo, but since reading all the blurb on triple negative, I will always be thinking what if? I now have symptoms which are a bit worrying and if it turns out to be secondary disease, this will mean I will have only had 2 & half years disease free period. I would therefore feel as though I had not been given the max opportunity of surviving 10 years by my medical team. A am now feeling a little bit p…off to say the least.
Hi everyone,
Most of you are talking about survival rates, just thought I would add my twopence worth. My first diagnoses was 26 years ago, I have had 3 recurrences which have been treated as they have occurred, my first one was 20 years after my first diagnoses and the last one was last year. I have never had chemo or been offered it, when I asked why I was told that I seemed to be doing well without it.
It must be difficult when you are given the choice, but I never have been. Maybe sometime in the future I will have to go down that road but I am 63 now so not done so bad without it.
Life is full of what ifs, we never know really if we are making the right decision just have to do what we feel is right at the time.
Take care.
Jan
Hi Everyone
It’s good to hear about all your different experiences. There are so many various factors it makes it very complicated. Age at DX does seem to make a difference as well as all the other aspects. I am 60 and was diagnosed in October. The different experts also seem to have different approaches and views. I will try talking it over with a counsellor and see if that helps. I hope your symptoms Yellow, turn out ok. Take care everyone Chaffinch
I have stage 3, grade 3, HER2 neg, ER + 66% 2/6 LN Micometastasis, Ki67 75%, given a poor prognosis . Had lumpectmy, not sure why they did not suggest a masectomy. Is it worth going thru chemo with such a poor outlook?
the chemo is to improve your prognosis… with only 2 nodes affected this is a really low amount and you could live till your 80 without it coming back… the main thing in terms of prognosis is that it hasnt spread beyond the nodes so it is still curable at this stage if you have treatment.
obviously you cannot predict who will get mets and who wont and that those who have positive nodes are more likely to get mets than somebody without ments just like some body with 20 nodes positive is more likely to get mets than somebody with only 2 positive nodes.
you have some really positive things like it being herceptin negative and ER positive and only 2 of your nodes.
you wouldnt normally get a mastectomy unless there was a clinical need ie… you had a large tumour, widespread DCIS, or genetic mutation (or high risk of carry one).
Lulu xxx
Noanie
I too have a grade 3 tumour. The way the oncologist described it to me was that chemotherapy is effective against cells which are dividing. Grade 3 tumour cells are dividing more quickly than say grade 1 tumour cells, so I would derive real benefit from having the chemo.
My onc took me through my stats. With no treatment I had a 65% chance of being disease free in 10 years time. With radiotherapy and hormone therapy only, I had a 75% chance of being disease free in 10 years. But if I chose to do the chemo as well as the radiotherapy and hormone therapy my chances of being disease free in 10 years would be just over 81%.
Needless to say, I am doing the chemo starting next month.
Your doctor offered you chemo because he knew it would improve your chances of being disease free in the future. The same reason it was offered to me.
Noanie, I suggest you give the helpline a ring in the morning and talk it over with them. They really know their onions and it may well help you to get your head round what you’ve been told by your onc. Number at the top of every page. They do just what it says on the tin, they HELP!