Help!! I’ve seen the oncologist today and been offered 6 months of chemo (FEC)following a WLE and SNB. The biopsy came back showing no lymph involvement. Tumour was 28mm (originally told it was ‘very small - only 11mm’)and Grade 3. E+ Her-2 Negative.
This was a massive shock. At my biospy results appointment 2 weeks ago, surgeon told me my “cancer has gone” and he’d make an appointment for me to see oncologist about whether chemo would be necessary - (he said they were still waiting for a test result) - and plan radiotherapy.
I have been told that I will definitely need tamoxifen and that this should greatly reduce the chance of recurrence and that chemo will only reduce that risk by a further 5%. I’m thinking this is not enough benefit to be worth putting my body through 6 months of hell.
I started this process with the thought “I’ll do what I have to do, and then put it all behind me and get on with my life.” Now I’ve been told it’s my decision whether to have the chemo or not. I lost both parents, at relatively young ages (51 & 72), to heart conditions, so I can’t help thinking I’d rather not waste 6 months making myself ill for possibly very little benefit, when I could die next year of something else entirely!
Sorry to go on so long, but I’d greatly appreciate thoughts from anyone else in the same situation! Thanks.
There is another thread you may be interested to read as this was debated on there. It was headed something like ‘refusing chemo and Herceptin’. I will try to post the link for you.
It is a very difficult time for you, hopefully that thread will help you consider your options. Take care. J.
Hi JCJ,
sorry to hear you diagnosis was not what you originally thought. This decision is a personal one and other people can only share their stories with you. My diagnosis was similar to yours but tumour was 4.9cm and close to the chest wall although the margins were good. My add-on is also 5%.
It’s in my nature to take any offer of adding to my chances of survival and I’ve never regretted the decision to go ahead with chemo, even on the worst of days. The effects are not as ghastly as I expected. It’s 18 weeks rather than 6 months and there are only six ‘miserable’ weeks in total with the rest seeing side effects reducing to nothing. My worst side effect has been tiredness and if you needed to work I think it would make life very difficult(I am 61 and retired). This has certainly increased with each dose - I am now more than half-way through fifth cycle of six FEC and I’m glad my husband does the cooking.
That’s all I can offer you other than to give you my best wishes and hope that you arrive at the right decision for you.
Hugs,
Kathleen
JCJ, i was in same boat as you 2.2 tumour and only 3% benefit but i went with the FEC. i had a ghastly time on the first one the second one just yesterday and feel much better with better anti sick meds, despite my horrid first time i do not regret the decision to go ahead with chemo. I want to throw everything i can at this disease. My brest nurse said " could you live with yourself if it came back as a secondary and you had not fought with everything being offered" she also said chemo is very expensive and the onc would not be offering it to you if it was not benefit. I am grade 2 but my onc made me make the decision and said" if it were grade 3 i would be advocating you have it the decision would be clear cut. Hope that helps and best of luck whatever you decide xxHG
Hi…haven’t posted for a while, but have been reading threads lots and picking up some really helpful tips! My situation is very similar to yours 29mm Grade 3, no lymph or vascular involvement, ER+ve3 HER-ve. My Onc recommended chemo FECx3 and TAXx3 as not sure Tamoxifen/Arimidex would be that effective as quite low for hormone receptors. Am on day 9 after 1st session - minimal SEs (although I accept that chemo affects everyone differently), some feelings of nausea in first few days, well controlled by anti-sickness meds, travel bands and all things ginger, no real bowel problems (eat lots of soft liquorice and prunes!), but today have a very sore, dry mouth and a bit of acid reflux! Nothing that icecream and gaviscon hasn’t sorted though. Have worked for the past 3 days - not working for the next 3 as white blood count will be low (although I have had 5 daily Zarzio jabs) and as I work in a school, but not directly with the children, don’t want to run the risk of an infection. Plan to go back to work (tiredness permitting) from next Tuesday. I understand that I will feel more and more tired so will listen to my body - although plenty of fresh air and exercise has been a great boon! Hair loss is guaranteed, and I have chosen my wig and a few beanies/bandos. As many wise posters suggest, I plan on treating each session as ‘part of the way’ through i.e. 1/6, then 1/3 etc., much in the same way I’ve treated each stage of my diagnosis so far. The decision can only be yours and yours alone, but I hope that sharing my experience with you may be helpful.
Thanks for your comments and helpful shared experiences. I would throw everything at this disease if I thought it would make it definitely go away for ever, but I can’t believe that drastically undermining my immune system for such little long term benefit is worth it. We all have to make our own decisions I know. I’ve been told I will not be allowed to work during chemo as I work in a school teaching kids. I’m already stressing about going back and the thought of another 6 months just seems too much to take for so little guarantee- and it will be 6 months or more: 18 weeks chemo followed by 4 weeks recovery followed by 3 weeks rads. And I feel I should be making the most of my life now (I am the age at which my mum died of a sudden unexpected heart attack!)not, in effect, making myself ill! This is day 1. I have an appointment with oncologist next week to tell her my decision. I’m sure it will change several times between now and then. I have spoken to both ‘children’ (27 and 24) and they whole heartedly support my disinclination to have chemo. But then they’d support whatever decision I make, I suppose. Good luck and minimum SEs to all you going ahead with it!
You’re welcome JCJ and whatever your decision will be the right one for you What ‘swung’ it for me - apart from the fact that my NHS Trust routinely offers chemo for all Grade 3 tumours - was that my Onc said that no-one could be 100% certain that even with no local evidence of presence that one of the ‘poorly differentiated’ cells hadn’t snuck away (not quite her terminology lol) via lymph or blood vessels and was lurking somewhere too small to be seen on an xray, scan etc. and that chemo was the treatment to kill off any stray cells…such a tough decision - whichever way you decide (and you will swing one way and the other until D-day, I did!) and no doubt we will always have in the back of our minds ‘what if…’ You take care x
JCJ
I was faced with a similar decision to yours and also refused chemo because in my opinion (having done a lot of reading around) it would be over-treatment. Like you, I made a judgement on quality of life versus possible long term benefits. In my case the theoretical long term benefit was 3% or so.
I don’t agree with the “throw everything at it approach”, since chemo itself has its own risks. But I know that many people on these forums prefer to take every treatment on offer. Each of us has to make our own decision, which is OK as long as we’re given enough information to enable us to do so.
Thanks CheshireCheese! It’s great to hear from someone who can help balance the argument. The trouble with these forums - (as great as they are!) - is that people who’ve put cancer behind them and moved on don’t spend time here! Good Luck with whatever you’ve got left to face - including a long and healthy future!
I was diagnosed with HR+ ductal tumour (grade 3)and orginally told 18mm with no lymp involvement. Whilst I was in with the surgeon, after WLE, he received a call from the path lab to advise that there was a further lump of 3mm in the biopsy tissue. The total being 21mm which just put me into the chemo bracket and I’d have to be refered to Onchologist. The cut a very long story short and get to the point as far as my situation stands.
I have an identical twin who lives in the USA, who was first diagnosed BC 20 years ago. Same type of cancer etc. She had chemo and rads and anti-cancer tablets. She had a re-occurence after 10 years. Her mistake, unbeknown to her and her Doctor (Path Lab messed up in USA)that it was HR and she started taking HRT after about 7 years. She then had a mastectomy and tablets and that was 10 years ago. She has never regretted having chemo and when I was diagnosed and sitting on the fence, like you, we had a heart to heart. Our family does not have a good history ref heart problems, mainly been on the male side but we females are not bulletproof. I come from a family of 7 children. Anyway, she said I had to fight it with everything offered, even if I was borderline. Her Onchologist told her you can’t get the time back.
I am now on day 10 after my first chemo session, of which I have to have 4 sessions Tax and Cyclophosphmide. Afterwhich I will have whatever rads and tabs etc. They have given me lots of anti-sick meds and injections for white blood cells and plenty of support. I haven’t felt sick and mostly felt tired from day 4 for a few days. You have to be careful about things, but now that I have started this and got the first one out of the way, I feel better about the decision.
My sister and I had the same type and size cancer when found. Things have moved on such a lot since then and they have far more to offer us in the way of treatment. I just think of what my sister said “If you make the wrong decision you can’t get the time back”. So I went with it and that was for me.
Sometimes I think to myself, would I have been happy if my tumour had been 19mm, grade 3 and they hadn’t offered me chemo? I think I would have been more than a little worried along the line.
I wish you well and you will obviously make your mind up one way or the other.
What ‘swung’ it for me - apart from the fact that my NHS Trust routinely offers chemo for all Grade 3 tumours - was that my Onc said that no-one could be 100% certain that even with no local evidence of presence that one of the ‘poorly differentiated’ cells hadn’t snuck away (not quite her terminology lol) via lymph or blood vessels and was lurking somewhere too small to be seen on an xray, scan etc. and that chemo was the treatment to kill off any stray cells…such a tough decision - whichever way you decide (and you will swing one way and the other until D-day, I did!) and no doubt we will always have in the back of our minds ‘what if…’ You take care x