I am on the Tact2 trial and had my second epi last thursday. As I was so unwell with the first (nausea for 10 days, light-headedness etc.) Really not able to operate as a thinking human being for over a week, my oncologist has suggested that I should consider stopping treatment! Now my head IS swimming! Before starting chemo I think I remember the onc telling me I would be mad not to do it. However, my tumour was only 2cm, single node affected and strongly receptive to oestrogen (scored 8/8) which means tamoxifen will work well for me. As the chemo is so debilitating is the extra 3% gain in survial rate worth the compromise to my lifestyle? (not due to finish chemo until next year). Anyone else out there had this dilemma? Or anyone got any advice. Really don’t know what to do.
I was told by my oncology team that if there was less than 5% advantage of having chemo they wouldnt bother.
Could you possibly ask for a lower dose chemo.
Could you increase your anti sickness tabs?
Epi is a strange drug as some people are so ill whilst on it and others of which i am one tolerate it quite well.
I can sympathise with you though as i know the dilemma of chemo. I was not having it at first but as the lump was twice as big as they thought after my mastectomy i was advised to have it.
I did think of sayin No, but then i was terrified of it coming back and regretting not havin the chemo.
At least if it does come back now i have done everything i possibly could to have given myself every chance of survival.
Saying that I think its an individual choice and although we have the professional advice its your decision.
Good luck
Rx
Epi is a tough nut to have chick. I hated it and it hated me…could just about cope with it, but had a fair few wobble moments as the cycles went on. Choice is yours if you want to continue with it…i know what my answer would be and thats just keep pumping me with it. Ive just finished 6 months worth of chemo the e-cmf…epi floored me completely walking corpse for 14 days, a week of normalityish then back to walking corpse. The cmf was a lot nicer and was back to normal within a day or two of go-steady, agreed with me sooo much more.
It is your choice though, and the way I see it, even if it only gives you a low extra percentage…its better than nothing. Id rather feel crap for however long…just to get that extra percentage. Good luck with your decision chick
I’m sorry to hear you’re in such a dilemma. You may find it helpful to give the Helpline a call, the staff here obviously can’t advise you what to do but may be able to give you information that will help you make a more informed decision. The lines are open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number to call is freefone 0808 800 6000. I hope this helps.
I was told by my onc when I made the initial decision to have chemo that it would give me an extra 4% chance.
I wanted to give up after my first Taxotere. But I carried on with it and am pleased now that I did. I thought - well OK so it means several months of feeling ghastly - but if it can perhaps give me several or even many more years of life then it’s got to be worth it.
Good luck with your decision.
Hi Sunny, there are not many people who don’t feel ghastly on chemo. I think I had every side effect
from 3 fec then three taxotere. On tax I didn’t function for about 18 days then I had to have more three days later but I wanted everything even if it gave me half a percent chance. I hated chemo but do not regret it at all and would do it over and over. Once it is over you will I am sure be glad. This is my view and not everyone would agree with me Hope you make the right descision for you take care of yourself love Eileen
Thanks for all your comments. Good to know all you guys are out there! Think one of the hardest things is being told I need chemo and then being told, maybe not…! Its not just that I have lost all my hair etc. I do understand that for some chemotherapy does play a much larger role in producing a better outcome. Will see how soon I turn the corner with this last dose and might go visit my GP for a chat. Anthi, and Elileen, you have certainly given me more resolve. Will let you know what I decide.
I was offered chemo and told that it would make about 4% to my outlook, and I chose to have it just to give myself every chance. It did make me very ill, but I don’t regret it one bit. To my way of thinking, every extra percentage counts! and I have the peace of mind knowing I did all I could.
Having said that, I respect anyone’s decision not to have treatments, as how we all cope and how ill we get is an individual thing, and whatever you decide will be right for you, so don’t be hard on yourself, easier said than done, I know.
Hope you are feeling better soon, lots of love, Deborah.xxx
Talk some more to your oncologist. Recent resaerch has been identifying subsets of different kinds of cancer. With er+ and pr+ and her2- cancers there are two types: luminal A and luminal B. One type does not respond to chemo but does respond very well to hormonals. This may be what your oncologist has in mind.
Do ask again about sttaitsics. What does a 3% benefit mean to you? (ie 3% on what chance of 5 year surviuval anyway) We all have different attitudes to risk.
Chemotherapy actuallu benefits far fewer patients and in far fewer numbers than we all like to believe (well thats my view.)
Good luck with your decisiuon…talk some more wth your medical team.
Hi Sunny - I had a 2cm tumour like you, and 4/18 nodes positive. At my hospital (a Breast Care Centre of excellence) my bc surgeon said they strongly advise all patients with tumours over 1 cm and node positive status, to have chemo. I had 6 x FEC 4 years ago and doing fine now.
It was really tough, as I also have Crohn’s and had to stop my normal chemo (methotrexate) in order to have FEC. I couldn’t eat any solid food at all, and was prescribed Frutijuice, 3 cartons a day each with 300 calories, My Onc also prescribed a small daily dose of dexamethasone, and although I was still faecally incontinent at times (to my horror, twice in the street), I am glad I did have all the treatments I was offered. It is now just a blur and I am eating properly again, having put on the 2 stones I lost. When I look back, I think it was the fact that the cancer had spread to my lymph nodes that was my decisive factor. I figured if it had already spread that far, microscopic cells could have spread further through my body, and I was told that was why chemo was prescribed. However, it is still your decision. Good luck
Liz.
I was told before my lumpectomy that if lump (cancerous part) was 1.5 or more and even if there was one node infected i would have to have chemo - no choice. I had fec (nightmare - terrible sickness and dizzyness) X 3 and taxatere (which most of you know has left me permanatly bald) and found tax much more tolerable. My lump was 2cm, grade 2, stage 2 and one node pos. Herc neg and positive progesteron. When i have finsihed my chemo i asked what difference it has made and he said increased by 25 %.