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has anyone refused chemo for breast cancer? or stopped once started?

(17 Posts)
Spero Sun 13-Jan-13 15:41:13

I would be very grateful for any views, comments. I've been doing a lot of reading, been on the MacMilllan forum etc, and to be honest there is just too much stuff out there.

But breaking it down, it seems that people are saying - the side effects are really unpleasant, there is only a small chance it will improve your survival rates, but you will want to feel that you did everything you could and the ultimate decision is a very personal one.

I am at day 5 of my first cycle for breast cancer - tumour was grade 3 and nearly 3cm so the oncologists 'very firm' advice was to go for chemo. But I am not sure I can tough this out for the next four months - it seems to be having an unpleasant impact on everything I do and I am getting more and more worried about side effects.

Seeing the oncologist again on 22nd Jan so will raise all my doubts and fears but I would be very interested in anyone else's perspective on this.

I guess I would just rather have a very clear - 'this will improve your chances by 20% but make you feel 80% shit for a while'. But I can see from what I have read that isn't how it works. It just seems so nebulous.

IamtheZombie Sun 13-Jan-13 23:38:54

(((( Spero ))))

It's nearly a year to the day since I started my first chemo cycle. I had 2 tumours - one grade 2 and one grade 3. Even though they were 99% certain that the mastectomy had removed all the cancer, they do push you hard to have the chemo (and the radio and the rest). But, my oncologist showed me all sorts of graphs which did show a marked increase in survival rates.

What side effects are giving you the most trouble? Maybe I can give you some tips on how to cope with them.

Have you visited the Tamoxifen thread in General Health? There are a lot of ladies there who have been through this. They really can help.

Spero Mon 14-Jan-13 00:20:32

thank you for reply and virtual hug.

I haven't seen any graphs, I have just been given impression that chemo helps only a small percentage - I am reading of rates between 2-10% which to me just doesn't seem to outweigh the side effects - I am already losing sensation in my foot, my hands are tingling and I am scared this is permanent.

but the worst is the mental impact, I am just grey. Not so dramatic as depression but like everything is covered in a blanket of just not giving a fuck about anything.

I am only five days in so I may need to settle in to the experience a bit more... but I thinking that for a mimimal change of 'cure' this seems rather crap.

It is encouraging that you have been given some more positive news but I find the whole swirling mass of different info a bit discouraging - surely if there were clear advantages, I would be able to find this set out unambiguously on numerous sites? Instead I find the MacMillan line is quite common - it's a personal decision etc.

But I am not a bloody oncologist! Thats like saying its a 'personal decision' how I build my own rocket to the moon. I don't have the info or the tools for that. I need someone else to do it for me!

But thanks for replying. Felt at a low ebb last night, feel better now. Will check out the tamoxifen thread and try to come up with some better questions for my oncologist - think it was the usual problem of shell shock when I last saw him.

IamtheZombie Mon 14-Jan-13 00:34:51

What chemo regimen are you on? I was on FEC. I was extremely lucky and I tolerated it very well.

I think I was / am extremely fortunate that my oncology team are very open and honest. I also think that first registrar was quite happy to find a patient who a) wanted to know EVERYTHING and b) wanted to show off a bit. The things he showed me aren't on publicly available websites.

I understand the "mental impact". That's going to happen no matter what drugs you're on. Suddenly you've lost control of your life for the forseeable future. You've stepped onto a treadmill that at the moment seems to have no end. But, it does. Hold on to that thought.

Please keep talking here and on the Tamoxifen thread. We've all been there and we're more than happy to help anyone on this journey.

Spero Mon 14-Jan-13 00:46:33

fec here too.

but why isnt stuff publicly available? A graph would be exactly what I want right now! or even a lovely pie chart. Instead I am reading loads of stuff from people who sound quite reasonable but who are telling me that if I just eat organic raw vegetables, I will increase my survival rates over 5 years by 20%.

but it is probably the mental impact thing that is worse - I am obviously feeling physically better now as I am pounding the keyboard rather than fast asleep, first three days I was in bed by 8pm. Just keep thinking that I have put a massive amount of poison into my system so the tingling scalp and imminent hair loss starts feeling very weird...

IamtheZombie Mon 14-Jan-13 01:14:17

Oh, Spero, please, please, please don't be taken in by the "organic raw vegetable" brigade. 20 years or so ago it was the Shark Cartilege brigade. (Google "Sharks Don't Get Cancer") I lost a friend to those charlatans.

Yes, eating healthily, keeping up as much exercise as you can, etc. will all help in the long run. But they are NOT a substitute for conventional therapies.

Look at my profile. There are pictures there of my hair loss. If you want to see more and if you are on Facebook, PM me and I'll tell you how to find me on there. I have photo albums showing each cycles effects. I chose to go bald(ish) and proud. I never ever wore either of my wigs or any scarves.

This will not defeat you. You are stronger than you realise now.

Spero Mon 14-Jan-13 09:01:01

don't worry, I am healthily sceptical! Its just a shame that these types seem to be able to put forward such a convincing show for those of us who are vulnerable and googling.... I would love to track you down on Facebook, I need to start thinking of the whole head issue. Wigs seem a bit scarey.

thanks ever so much for replying. It means a great deal. I feel a lot brighter today. Will probably make a to do list which always cheers me up.

IamtheZombie Mon 14-Jan-13 09:46:09

I've replied to your PM, Spero.

One thing I did immediately before I started chemo was to have my hair cut really short (think Emma Watson as soon as the final Harry Potter film was in the can) so that it didn't feel like such a big deal when it started coming out. Also bear in mind that it's not just the hair on your head that will go!

Lists are good things.

Spero Mon 14-Jan-13 09:48:37

I have already had the fetching pixie cut, and I quite like it! Irony is it will probably be gone in a few weeks. I was warned about the nose hair - by an internet source sadly, the drs didn't think to highlight that, guess they thought it should be pretty obvious but I was just focusing on the head area...

I have tried to send you a facebook message, but it doesn't seem to recognise you so it seems that fears about facebook's lack of fort knoxian privacy settings are ill founded...

IamtheZombie Mon 14-Jan-13 10:06:12

I've PM'd you my FB email address thingy. Try that.

IamtheZombie Mon 14-Jan-13 10:11:24

OK, that's progress. Got your email. Can't read it mind you (as it's not displaying!). I have replied though so maybe you'll be able to click on me now?

FrameyMcFrame Thu 07-Feb-13 20:01:49

Hi, google the website Cancermath
It has interactive things where you can enter your info and then each treatment and it gives you the statistical benefit for each treatment.
There's another one called Adjuvent but you have to be a doctor to use that. Some people go on it anyway.

Fightlikeagirl Sun 17-Feb-13 13:13:57

Thank you framey, just went on cancermath and worked out by having chemo I increased my 15 yr survival from 75% to 86%, wow! That might not sound like much but that has made feel so glad that I decided on the chemo. Had never heard if cancermath before.
Op, hang on in there, I too didn't want chemo, I had a big strop when they told me I would need it which ended in me telling the doctor that he couldn't force me then going home and locking myself in my bedroom and refusing to talk to anyone!!! I was a 30 yr old woman, a wife and mum but acted like a spoilt child. But it was what I needed, I cried and shouted and then came out of my room ready to face it all. It was a tough few months but after a couple of cycles I knew what to expect and which days I would need help with the children and planned nice things with friends and family on the days when I knew I'd feel bit better.
Ask for as much help with the side effects as you need and be kind to yourself.
I'm just over 2 years past chemo and I'm so glad now that I did it but you have to do what feels right for you. Feel free to pm me, I found the best support was from a few ladies I met on fb, have never met them in rl but I consider them my friends as we have been there for each other at our darkest times. Is sometimes so much easier to be honest with people you don't know!!
Good luck op.

Delatron Mon 18-Feb-13 19:19:00

Was just going to recommend cancermath, it is very precise and will give you a good idea of the benefit to you.

I had a 2cm grade 2 tumour and the benefit to me was 9%, to me that was enough. Chemo is more effective on grade 3 tumours though so you should get even more benefit. My doctor gave me specific graphs with the percentages, you should ask for the same?

Yes chemo is absolutely shit. Every month I would announce I was quitting, I wasn't going to do this any more. Then the day rolled round and I hauled myself in. A year and a half later my hair is down to my shoulders and I am running about 15 miles a week. You will get through it and you will be fine. It is normal to question such a toxic treatment, I did continually but in hindsight I am glad I did it.

Good luck.

rosi7 Wed 03-Apr-13 21:20:16

Interesting article about researchers stumbling across something very unexpected concerning chemotherapy:

naturalsociety.com/chemotherapy-makes-cancer-far-worse/

imaginethat Fri 03-May-13 08:35:26

Hi Spero, so sorry for what you are going through.
My sister had breast cancer. She declined chemotherapy as it would only increase her chances of survival by 2percent and would dramatically decrease her quality of life.
She died 10 months later with absolutely no regrets about her choices.
All the best to you x

Jakeyblueblue Sun 05-May-13 23:03:00

Hi, I'm a Macmillan nurse and see lots of people with your dilemma. Yes, sometimes the side effects outweigh the benefits but for lots, its the other way around.
My advice to those who aren't sure if they should go ahead, is to give it a go and see what happens. If you feel you can't tolerate it, stop. If you've got a good team they will support you in this decision.
Good luck!

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