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How do I make a chemo decision?!

25 REPLIES 25
carolj
Member

Re: How do I make a chemo decision?!

Hi ladies
I decided to go with the chemo - start next Thurs - as I wanted to do everything I could to improve my chances. As it turned out my lads said they preferred that decision even though they would have supported me not having chemo! Even had two appts with the onc because I changed my mind!! I know it won't be easy but a lot of you have come through it ok..... have recently been reading the top ten tips etc

Anyone in North hampshire about to start chemo??!!
xx

Kelley
Member

Re: How do I make a chemo decision?!

Hi Carol,
I finished my treatment 3 years ago. Chemo wasn't pleasant but I got through it OK with no major problems and I've adjusted quite well to the long term effects, eg less concentration, poor memory and lack of stamina. What has really got me down is the osteoarthritis that has recently been confirmed which my surgeon says was probably caused/made worse by the chemo. I have a lot of joint/bone pain. I don't know whether its the arthritis spreading or the Aromatose Inhibitor I have to take. Don't get me wrong, I have no regrets re having the very strong chemo which has improved my chances of survival considerably. But if it had only made a small amount of difference, it may not have been worth it for me.
Best wishes
Kelley

ForumMember
Member

Re: How do I make a chemo decision?!

Hi carolj. what did you decide? I was given the choice too, and told it would improve my survival chances by 5-10% - I started FEC today. I decided as I am 36 and have a 9 year old daughter I would always think "should I have had chemo?" if I didn't and the cancer came back. However I know it still can xx

carolj
Member

Re: How do I make a chemo decision?!

Sorry - Kelley - good luck with yours - where are you in your treatment

carolj
Member

Re: How do I make a chemo decision?!

Thanks everyone - have onc appt tomorrow - I'm still thinking
x

Kelley
Member

Re: How do I make a chemo decision?!

I have changed my views recently. I would always have said better safe than sorry but now i think if the % improvement is small it may not be worth it. In my case it made about 20% difference if not more so I would have been silly to refuse it. But the long term side effects for me do get me down at times. I certainly wasn't aware of all the side effects or how long lasting they may be. It's certainly not an easy choice.

AnneG
Member

Re: How do I make a chemo decision?!

Hi Carolj

I think it better not to go into too much detail about my experience because I know that what happened to me was extremely unusual. I seemed to be doing quite well and didn't have many of the usual side effects but I did have something very serious occur which led to the recommendation that I should think hard about not finishing the course of 6. I seemed to be unique in what happened so it's not worth you worrying about because really not likely to happen to anyone else. And I have no regrets about having the 4 I did have, more regrets about not being able to have the six.

There is a section of the forum about Tamoxifen, Arimidex etc. There are several threads about the side effects so you could look on there. I have pretty painful joints but I try to do lots of exercise to counteract this. There are people who are a lot worse than me and no doubt lots of people who are a lot better. You may be absolutely fine on them.

Good luck with your decision
Anne

redders
Member

Re: How do I make a chemo decision?!

Hi Carolj!

I didn't agonise over the decision not to have chemo. I suppose if I were 20 years younger and had young children I might have done. My husband totally supported my decision and my son is almost 27, so not the same worries. Also because my onc said he completely supported me I felt okay to say no. I have a friend who has had such terrible side effects from the chemo, and had to have further drugs for the side effects and now has even more side effects from the 2nd lot of drugs. But obviously on here there are women who have very few effects - the difficulty seems to be not knowing which category you are in!
Do ask your onc what he would tell his wife to do. They always say "you shouldn't really ask me that" - but in my experience do go on to tell you!

countrygirl
Member

Re: How do I make a chemo decision?!

Hi this is my first post. I am very frightened of the prospect of chemo and have an appointment in 10 days time with oncologist... Surgeon and BCN have told me chemo is a grey area for me and will be up for discussion and my head is reeling with it all! I am 57, had 2 Grade 3 invasive ductal carcinomas in left breast removed by mastectomy and axilary clearance 6 weeks ago. Lymph nodes were clear, clear margins were taken around tumours. Tumour sizes were 21mm and 16mm and there was also 7mm of DCIS so I'm very glad I had mastectomy. Tumours were both ER+, PR+, and HER2+. There was lymphovascular invasion seen near one tumour. I'm rapidly learning all about this disease! I always find decision making hard and cannot sleep with the anxiety of doing the wrong thing. One complication is that I live on an offshore island and will have to travel for 12-14 hours including long ferry trip to get to hospital (there will only be 3 ferries a week) so if I do have chemo +/or Herceptin I will be constantly travelling away from home while it goes on and will be away for nearly a week at a time. The health board pay travel costs but not to stay away for the duration..... Sorry for information overload, but I am completely stuck and this is doing my head in. Thanks for reading this!

horace
Member

Re: How do I make a chemo decision?!

I was told 70% 10year survival with just surgery increasing to 85 with chemo and rads.Mine was 2cm grade 2 IDC triple negative, no nodes.
Vx

Lalala
Member

Re: How do I make a chemo decision?!

I was told 30% chance of recurrence in 10 years if I didn't have chemo too. Tumour was Grade 2, 27mm lobular, no lymph nodes, oestrogen +. Good luck with your decision.

Shelagh x

carolj
Member

Re: How do I make a chemo decision?!

Thank you ladies - it's good to hear from both sides! Maybe when I get the HER2 result it may sway me one way or the other...Anne G - as you say you cannot have herceptin without chemo ... altho' still new to me, sadly I'm beginning to get the hang of bc. Dare I ask why you stopped - or will it put me off completely!! Friday night thoughts are... think I need to do what I can to try & prevent future spread. And the "dreaded Arimidex" ?? Keep telling myself it really is better to know...!!

Redders - did you take the decision alone or with your family etc? Did you agonise like me?

karen
Member

Re: How do I make a chemo decision?!

Thats what I thought but he definetly said...'' your chances of survival and of being cancer free in 10 years could be increased by 30% '' ...even my GP thought it was a huge percentage.
And what I didn't understand was that after 4 FEC I made a decision to stop...long story...but the decision wasn't taken lightly...lots of discussions...and onoclogist on the team who I saw then said...'' you were borderline chemo anyway''??????

Have often wondered if the first one I saw was using '' i'll frighten you into it '' tactics...he wasn't very tactful or understanding.....that was 4 yrs ago ...I hope he's improved his ''bedside manner'' since then!!

karen

redders
Member

Re: How do I make a chemo decision?!

Hi Karen!

Are you sure your onc said your chances would be increased by 30% or was it 3%?? I had 7mm tumour, no nodes and clear margins and was told 2.4% . 30% sounds a HUGE amount of difference.

AnneG
Member

Re: How do I make a chemo decision?!

I was grade 3, 12mm, ERpos, PR pos HER pos no nodes, age 55. I was given the choice, but had the feeling that it was being recommended and I don't think I could have had Herceptin without chemo so I went for it. I only managed to have 4 in the end (a long story) but really I am glad I had it as I feel I have done as much as I can to try to prevent any spread. Have now done 15 out of 18 Herceptin so the end is now in sight, apart from the awful Arimidex...

Good luck with your decision
Anne

karen
Member

Re: How do I make a chemo decision?!

Hi,
What a difficult decision, I was also Grade3 no nodes involved, 12mm tumour, my oncologist said my chances of survival could be increased by 30% with chemo'.........I was 43 when dx......he was quite determind for me to have chemo'......and even though I was petrified I went for it.

Wishing you well whatever your decision.

karen x

redders
Member

Re: How do I make a chemo decision?!

Hi!
My chances, if I had chemo, were only improved by 2.4% and I decided against. My onc said he entirely supported me in that decision and that balanced against the awful side effects of chemo he thought that was the right decision. He also said that had I insisted on having it, he would have agreed to it. I think age has a lot to do with it and the younger you are the more aggressive the treatment. I am 64 and he gave me a computer printout showing the likelihood of dying from cancer, and the chances of dying from something else over the next 20yrs and they were about equal.

carolj
Member

Re: How do I make a chemo decision?!

Hi Tracey
Are you coping ok with it? I have just ordered the book - hope it will help me decide!!
x

carolj
Member

Re: How do I make a chemo decision?!

Hi
Think it was 2.5 % - but was in a bit of a good news/bad news fog!

dotchas
Member

Re: How do I make a chemo decision?!

Have they told you how much it may increase your chances by?
Another poster had the same dilema recently and decided against chemo as it was suggested it would only increase her chances by 3% and her prognosis was already good.
I was not offered chemo so did not have to make this dreadful decision.
The main thing to remember is that it MAY still return even after chemo,so if you decide against it and your have recurrance ,it may not have been prevented by chemo.
Maybe ask your onc what he would want his wife to decide?

Hugs
Dot
x

carolj
Member

Re: How do I make a chemo decision?!

Thanks - it's good to know people are listening! Tumour was mucinous (?) 1.5cm hormone ER+, waiting for HER2 result - does that all make a difference? I'm 54 - no family history

anxious
Member

Re: How do I make a chemo decision?!

H i Carol

I was similar to you but only grade 2,however Onc strongly recommended chemo because of size of tumour it was 2.5cm
I read lots of info including Dr susan Love breast book on her advice for chemo and decided to have it.

I'm due my 2nd dose this tuesday and it is very doable, personally its been the psycological aspect that is hardest as i didnt really want it in my body,however i decided that i had to make a decision that would allow me to live the rest of my life without fear hanging over me,and for me the decision had to be yes.

It is a very personal decision and i think you have to go with what you feel able to live with and not regret it.

best wishes Tracey

Sam_BCC
Member

Re: How do I make a chemo decision?!

Hi carol

As well as the information you receive from your fellow users it may help to talk this through with one of the trained members of staff on the BCC helpline. Here you are able to share your concerns and you will be offered support and advice. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope this helps

Kind regards

Sam
BCC Facilitator

moonshine
Member

Re: How do I make a chemo decision?!

Hi Carol,

It must be difficult to have to make that decision. For me, I had WLE and no nodes, Grade 2, but they have insisted I need chemo - so no choice for me. I was hoping to get away with it, but they have explained about chemo nuking any stray cells and it is a belt and braces approach. Hope this is of some help.

Tracey xx

julie8
Member

Re: How do I make a chemo decision?!

Hiya carol,
What a choice! I wasn't offered chemo last year as i was similar to you but a grade 2. I asked at the time but they considered me low risk! since then I have read on this site many women being given the choice like you even with grade 2's. I think size and age is a factor although hospitals seem to act very different in the way they offer chemo.
I was relieved last year but because of my age (40) wonder if I should have insisted! How old are you and what is the tumour size? Are you hormone Positive?
Good luck to you
Love JulieXXX

carolj
Member

How do I make a chemo decision?!

Hi ladies
You have all kept me sane (and laughing) during the last few weeks! Following WLE etc clear margins, no node involvement (lucky, I know) but grade 3. Have been offered chemo before rads etc - my choice How has anybody else coped with the chemo choice? Help pls!