I have recently been diagnosed with breast cancer and three operations later I’ve now got to face the prospect of chemotherapy (AC – Accelerated Taxol). After reading as much as I can about chemo I’m wondering whether the short term and long term risks outweigh the benefits of having the treatment considering there is only a 10 to 15% increase to life expectancy. Has anyone else declined treatment or have any advice for me. I saw the oncologist yesterday and am supposed to make up my mind about treatment today. Thanks
Can’t help with your decision making, but I think that 24 hours is pushing you rather. Maybe you can extend the deadline until after the weekend so you can really sit and weigh it up. I find making two lists helps - usually there is one glaring factor that helps me decide.
If it has to be decided by today - and that doesn’t mean that chemo would start today, you could say yes - then after the weekend either confirm or call to say you’ve reconsidered and thanks, but no thanks.
All the best
remember at all times it is your decision, don’t let anyone pressurise you.
Hi Elizabeth - it is true only you can decide but they don’t exactly give us enough information to make these ‘life changing’ decisions. The debate over statistics constantly raises its head through these forums and none of us know which side of those statistics we will fall. I have been through a number of chemo treatments over the past 17 years. I am sure my odds of being here today statistically would have been very low indeed - so I would say it has been absolutely worth it. It can be hard going but most people here will say when they look back that at least they did all they could.
Have you got a good breast care nurse you can talk it through with - or even get on the phone to the Helpline here.
I didn’t want chemo but my family really put me under pressure to go ahead and have 6 cycles of FEC. After each chemo I said that I wouldn’t be having anymore. However, I did actually manage to have the 6 treatments. My oncologist said 'how would you feel if the cancer comes back - will you reget not having chemo - although chemo only upped my survival rate by 6%. As my family said someone has to be in that 6%. If I do have a recurrence I don’t know if I would have chemo again. My oncologist said that in her experience very few patients actually refuse. I am of the opinion that it is quality of life that matters not quantity… Fingers crossed I never have to made that decision!
It is a hard decision to make, you have already been battered by surgery - I was lucky my surgeon got everything right first time, including the decision to all my lymph nodes so I avoided additional surgery. Chemo just seems to go on for so long and the list of side effects is quite scary. all I can say is that most people do not get all the side effects and appart from hair loss they often only last for a limited perod in each cycle so you do not feel dreadful all the time - you do have good days even whole weeks. I have managed to keep a lot of stuff I enjoy going with a little help from my friends (is there a song in this somewhere?). Overall it has not been as bad as I expected.
10-15% is quite a decent increase i.e. it can boost 65% up to 80%. I don’t know what your situation is with regards to spread etc, or family. The idea of drawing up a list of pros and cons seems good, and asking for a bit more time to think. Personally I decided to chuck everything at the cancer this time round. If I have a recurrance I may think twice about the chemo because it does take up such a chunk of time.
Dawn’s idea of phoning the helpline seems good - having someone else to bounce your thoughts off can help especially if they are not emotionally involved with you.
I wish you well. You must make the right decision for you. good luck Swanie
As Dawn and Swanie point out, you are welcome to contact our confidential helpline on 0808 800 6000 for further support, information and a ‘listening ear’.
The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
I was told that chemo would increase my chances by only 3% - 4% but I still decided to have it. I thought that if the cancer were to come back then at least I would know that I had done everything within my power to stop it. I have accepted all the treatments offered - although not without several lengthy discussions with my onc.
Chemo is not nice but it is ‘doable’ - they give you lots of medications to help with the side effects and we all get through it. there is loads of support on this board also.
As anthi says, chemo is tough but definately doable. I had my mastectomy first, in march, I was 34 at the time. I was told that regardless of any node involvement (which it turned out I had) I would be given chemo and rads because of my age. Personally, for me, there was no decision to make really. I was 34 when diagnosed, live with my lovely boyfriend who I long to get married to and start a family with. I intend to take everything they are willing to offer me if it means I can live long enough to do all these things and more.
Were I to get a recurrence somewhere down the line, I believe I would do the chemo again and again if necessary, even if it was only going to make a tiny difference. I am 2/3 of the way through my chemo now (E-CMF) and although it is tough, both mentally and physically, it is definately worth it. Don’t get me wrong, sometimes I have felt like absolute sh*t and thought ‘I can’t go through with this anymore’, but I always go back for the next session!
I wish you well as you make this decision, and I am sure that ultimately you will make the decision that is right for you.
Take care and be sure to let us know what you decide,
I was dx on 16 July with bc and then told had gone to my liver on 26th July. Surgery now not an option and went straight onto chemo. Had my first session last week and to be honest, it was not half as bad as I expected and thankfully I have had no side effects yet, although under no illusions that will keep my hair, but am prepared and got a wig waiting. I didn’t really have a choice, as wanted to prolong my life for as long as I can, I am 39 and have a 3 yr old and a 9 month old, so I want to see them grow up for as long as I can. Not sure on stats, but if having chemo gives the chance to keep going for another 5 years (or more hopefully), then will take it as and when I have to however many times.
The decision has to be yours and you have to want to do it really I think. Don’t let yourself get bullied into making a decision though, think you should take as much time as you need.
It is tough to way up all pros/cons of those stats that they present to us and also to believe that they mean something to you personally. I had same choice to make - small but significant improvement in % if had chemo - I took it! I have now done two rounds of chemo - icky but bearable and I agree with some of the other comments that you do get a ‘good period’ between the doses. Think about it as long as you have to and don’t be rushed - its your choice.
Perhaps you should take a bit more time to research chemotherapy before you decide. Have you got a copy of Dr Susan Love’s “The Breast Book”. I keep recommending it you would think I would be on commission!! I have found it invaluable from when i first was diagnosed through to today with one chemo to go. I agree with the others, chemo is icky but doable but only you can make the decision. Someone has to be in the 10 - 15% - why not you (and me!)
Hi Elizabeth, i wish you well in whatever you decide to do, i nearly refused tamoxifen as i didn’t really believe the benefits outweighed the effects, but i have a good prognosis with it, and feel that its not just about me, but my family also, but now that i’ve had more time to think about it, i’m glad i’m doing something to help me, ok, it makes me feel like the proverbial but it may keep me alive a lot longer. as said above , its your choice, don’t be rushed, and just do whats best for you, i never had to face the prospect of chemo, so very lucky there, but at 44 yrs old, well, i’d like a bit longer on this planet, but thats just me.
OK - I have decided to go ahead with the treatment. All the comments have been such a help and listening to you all (and the help I received from various helplines) has given me the information I needed to make that decision. I’m still not happy about having to do it and of course I’m pretty scared BUT, with so many positive comments, thoughts and stories I’m sure I will get through this.
Thanks everyone for being so supportive - wish me luck for my first session on the 23rd.
So glad you’ve managed to make a decision, none of all this is easy but I think that we do need to be given the information needed and reasonable time to make informed decisions.
I feel very fortunate that I have a good team that listen to me and encourage me to make my own decisions. Neither my surgeon or my breast care nurse pressurise me at all - when first dx 2 weeks ago I was determined to carry on on the 3 month trip of a lifetime in october.
Once I’d got home and sat quietly to work it out I realised that it really was not possible - so emailed them with my decision. But no pressure. It takes time for information to really sink in and in my experience the less others push the faster the info goes in.
All the very best for the 23rd and I hope it seems like no time at all before we are both posting a thread “chemo finished!”
Glad you have made your decision and done what you wanted without too much pressure. I think you are doing the right thing myself, but obviously everyone has to do what is best for them and makes them happy and others must respect that. I can’t say how good or bad it will be, I am on a different chemo to you and have only had one session so far which was on the 8th Aug, next one on the 29th Aug. As I said before had no side effects yet, but am sure this wont last, and am absolutely petrified of losing my hair and got everything ready now.
Hope it all goes well for the 23rd, try to relax (easy said I know), but it is not as bad as you imagine, I was absolutely terrified when we went and ended up having to wait 2 hours, but once it got going was fine.
I am so glad you have been able to come to the decision to have the chemo. It is tough but VERY doable. If I can do it, anyone can! Believe me. Also, you will not believe how quickly the time will fly once you have had your first treatment. I am now 2/3 of the way through E-CMF, and when everyone told me how time would fly I did not believe them, but now I can honestly say I don’t know where the time has gone!!
I wish you well for the 23rd. Take care and be sure to let us know how you get on,
I’m pleased that you’ve made the decision to have chemo. I think you will feel better once you start - I certainly did - I felt that I was doing something positive to fight the cancer. And once I’d started I felt committed to carry on and complete the full course of chemo.
Very best of luck for 23rd. Let us know how you get on
Love Anthi
Have only just seen your message, so I’m a little late in responding. I’m so glad you have agreed to go ahead with the chemo - yes it’s hard but it is do-able, and it does work. My tumour initially measured 5.2cm x 2.5cm, and an MRI scan after my 4th chemo confirmed it had shrunk to less than half its original size. After chemo, I’ll be having a mastectomy, node clearance, rads and herceptin.
I must admit, I never asked for statistics - I just told my Consultant that he was the expert, I wanted to live as long as possible, so I would go ahead with whatever he recommended. Mind you, I do appreciate that everyone is different.
Good luck for the 23rd - I’m sure you’ll be fine, and please let us know how you get on.
Well I’ve done it - my first chemo is under my belt. As most of you have said it was completely do-able and so far (17 hours after treatment) there are still no side effects. I’m being positive that I could be one of the few that gets limited side effects but I’m realistic and know they could kick in at any moment!!
Thanks for all your support and helping get though this.