Hi
I appreciate this might not be the right forum, so mods, please do move if inappropriate.
Does anyone know of anyone who has had breast cancer (any type), has been advised to have chemo, but has for what ever reason, decided to decline the treatment?
I have been advised to have the chemo, FEC and TAX, but at the moment, just don’t want to have it for lots of reasons.
Thanks.
Nasreen
I didnt decline chemo but i thought id just ask did the consultant give you your percentage prognosis with and without chemo?
Thats what made my mind up as at 32, an increase of 9% sold it to me but had i been older i honestly dont think i would have had chemo.
It is about quality of life. I had 5 cycles out of 6 as i just couldnt do the last one regardless of what anyone else thought as i didnt feel sacrificing my present was worth any more.
Good luck and hope someone has better advice for you
S
Thanks Evie
My percentage prognosis is 12%, so i guess i should be having it, plus i am 38 years old.
xx
Hi Naz, I did have chemo but I think there are some on here who have declined it,but I think their percentage prognosis were really low.Hope you dont mind me asking but what grade was your cancer and did you have nodes involved or vascular invasion.
best wishes mell xx
Hi Naz
You might find it helpful to read the BCC booklet on chemotherapy. It is intended to help those affected by breast cancer learn more about chemotherapy by answering many of the questions you may wish to ask and explaining what chemotherapy is, how it works, and the benefits that may be gained from it.
If you would like to order a copy or read this on line just follow this link:-
breastcancercare.org.uk/upload/pdf/chemotherapy_07_web_0.pdf
I hope this helps.
Kind regards
Sam (BCC Facilitator)
Hi Naz
Chemo will give me an extra 14% so the stats speak for themselves. Unfortunately I feel like I am being pressured into this by other people i.e I have a husband and 3 kids and if it was up to me then I would go with the flow so to speak. This disease has taken enough out of my life without making me more miserable for the next however many months. I will lose my job because of it (the caring NHS) and feel if I returned to work and had surveilance then atleast I would have some normality back.
I have to say when I got into a heated discussion with the Oncologist about stats, prognosis etc he was very anti any other suggestion I came up with as they already make their minds up what you will be having even before they meet you. I even missed my chemo appointment last week (1st FEC) as had a major domestic with my OH and thought what the hell am I doing this for. However I get copies of all my letters and after reading my histology I know it is the right thing to do. Not because I have the disease anywhere else as they can’t tell you that but just incase. They are going to have a hard time persuading me to have lymph clearance (3%) plus radiotherapy (3%).
Is there a specific reason you don’t want it. Mine is simple I work in this area and know too much but not enough at the same time.
This treatment is causing me major problems and I am scared stiff, like every other person who is and has gone through this so atleast I know I am not alone.
Hope this is of some help.
Elle x
Dear Naz, These are hard decisions that we have to make about treatment. Unfortunately when you talk to your oncologist they give you the advice that they have trained in ie. cutting, burning and poisoning to put it in crude terms!!!
There is a whole other world out there where people use all different kinds of treatment for cancer.
People refuse mainstream treatment for all different reasons and get better!!
You need to get different perspectives from other people and make informed choices and go with what feels right for you.
Best wishes
Leadie
Hi Naz
I think that is something each and every one of us who have, or are, undergoing chemo has considered. I definitely did, I really did not want to do it, fear of the unknown and not being in control of my own body were I suppose the overriding factors. i know there are alternatives but when it came to the crunch I felt I owed it to myself and my family to give it my best shot, and I decided to go the recommended medical route rather than any alternative. I have just completed 5 of 6 TAC, won’t pretend it’s been easy but you just have to take each day as it comes and look forward to a healthy and cancer free future. It’s your body, your decision - very best of luck to you whatever you decide to do.
Dae x
Thanks for all of your replies, they have been really helpful indeed.
Melly - Mine was a grade 2, one node involved at the biopsy,40mm lump.
I will continue to get as much information as i can over the next week, but deep down i know i haven’t the courage to go through with it, but god it is hard, i have two young children and a partner, he is scared stiff that i won’t have it and what the consequences might be.
Elle - To be truthful, i am just scared stiff of having it, the fear of the unknown and not being in control of my own body. I know it is all temporary, but that does not change how i feel about it…
I guess i will make the right decision for me eventaully.
Nasreen x
!2% is alot you know and 40mm is quite big.You have young children and want to be around for them.Chemo is never a bundle of laughs but it is usually doable.Think of 100 women in a room with breast cancer-of those with exactly your prognosis 12 more who have had chemo will live-you want to be one of those 12 dont you?
hi Naz, i just wanted to say to you that i was absolutely petrified of having chemo. If truth be known im always a little anxious going to get it. I was so scared that i have been having hypnotherapy to help me with anxiety. I have found these feelings so difficult to deal with as i have never been anxious like this before. I can honestly say though that its nothing that isnt doable, i think too it helps to keep in mind what you are trying to achieve in having it. I remember thinking no way can i have 8 cycles, now i have done 6 and have 2 to go. It is a personal decision but i think most of us have discovered that we are a hell of a lot stronger than we have considered ourselves to be. Have you maybe considered trying it and seeing how you go? There is nothing to say you cant stop at any time.
take care
anna
Naz i had chemo with a 10mth old and a 2yr old and it is doable. Please PM if you want to.
You will find the strength to do chemo, we all do and it really is a chore but boy does time fly! My consultant said you need 4 for definate and any more is just belt and braces so perhaps aim for 4? I was not ill until number 4 if i am honest.
Take care
S
Evie, I have pm’d you if that is okay…
Anna - I feel the same, so anxious it is scary…i have never felt this way before about anything, and i too would probably benefit from some hynotherapy to deal with how i feel at present.
I think you are right, i need to try it at least, but it still makes me feel nervous…
Horace - What you say makes sense…and has put it all into perspective now…thankyou…
Okay, i will do some more thinking this weel, haven’t got long left now to decide.
Thanks again.
Naz x
Hi Naz, my cancer was also grade 2 and I also had 1 node involved.My tumour was 17mm.The thing is once cancer has spread to lymph nodes there maybe tiny,tiny cells lurking about and chemotherapy (or poisoning) is proven to kill these cells.I know it is a really scary time. When chemo was mentioned to me I was scared stiff,but having watched my mum die from B.C many years ago and knowing that there is really nothing else out there that is proven to kill cancer cells I had to give it a go.
sending you big (((((hugs))))) and wish I could take your fear away love Mell xx
Hi, i get the hypnotherapy from a charity called wirral holistic society, ( i couldnt afford it otherwise) maybe there is a similar organisation in your area? Try not to think about having the entire course of chemo and try taking 1 day at a time. My last chemo cycle i started to feel rough on the friday night, (after having chemo the wednesday) and was feeling better by the sunday night, in the grand scheme of things in a 21 day cycle thats got to be worth doing. That was the easiest cycle i have had and i hope the next 2 are similar, the unknown is a scarey place, but if i can do it, anyone can.
take care
anna
Pm’d you back
S
X
Hi all
Interesting discussion here…
To anyone about to undergo chemotherapy for the first time, first of all you have my deepest sympathy because it is such unknown quantity for you. And it’s the unknown that always frightens us.
First of all, chemotherapy is expensive, so you can be sure that if your onc is recommending it, he/she isn’t doing it on a whim. They really are of the opinion that you would benefit from it.
Also, suppose you sort of reverse the scenario?
Imagine if your onc had said to you ‘There’s a recognised and approved chemotherapy that will improve your chances by 5%/10%/15% (or whatever), but I’m not allowed to give it to you, no matter how young you are or how many children you have’. How would you feel about that? Relieved? Angry?
Lots of women struggle to get the bc drugs that they need. I can remember the great battle over Herceptin, which is now used routinely. Please don’t turn down ones that are freely offered.
Chemotherapy isn’t nice. I say this as a FEC (2004), Taxotere (2008) and Taxol + Avastin (2009) patient. But it’s one of the reasons I’m still able to sit here and type this now.
All the best to you and good luck with your decisions.
X
S
‘Questioning Chemotherapy’ by Ralph Moss might be of use. I’d begun to question it long before reading this - but it’s very interesting stuff.
It’s available on Amazon UK as well but there are more customer reviews on the US version here:
amazon.com/Questioning-Chemotherapy-Ralph-W-Moss/dp/188102525X
Best of luck with your decision. Took me about 6 weeks to make mine!
Can I just point out that that book is now 14 years old, and therefore the research the author will be quoting is older than that. Just want you to think about that. My BCN told me that there is an annual conference about breast cancer that sets the guidelines for treatment recommendations and minimums - research and medicines are advancing all the time, and chemotherapy is very different today than it was 14 years ago (and I do know this as my mum has BC and chemo 11 years ago and had different reactions than I have had).
I couldn’t consider a 12% difference and not have the chemo. Especially if I had children. I am not surprised you husband is worried you won’t have it.
I accept it is a personal choice, but I think you would be better dealing with the anxiety and worry than turning down the treatment. But that is my personal opinion, and you must make your own choice and be happy with it. I’ve mentioned before that I have had a good reaction to it - you might too. You won’t know until you try and you may find you are stronger than you thought.
Good luck and lots of hugs to you xxx
Ralph Moss also claimed to have a high title in a cancer research institute,but his only title was “science writer”.