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Decision to make ...and any advice on EC?

11 REPLIES 11
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Re: Decision to make ...and any advice on EC?

Hi Thistle,
I'm so sorry that you've got a tough decision to make after everything you've already been through. I wish you all the best throughout your treatment and hope you get all the guidance and reassurance that you need to help you make the right decision for you.
I start my treatment on Friday 13th - EC x 3 and T x 5 so I'm also interested to know how everyone has coped with a similar course of treatment. Also I've gotta have gcsf injections mid-cycle that I'm not looking forward to (major needle phobia) but I am determined to give it a go.
Sam xx
Sam xx
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Re: Decision to make ...and any advice on EC?

Hi Thistle

 

It's Emily here from Breast Cancer Care.

 

Thanks for sharing. It sounds like a challenging decision to take, especially when you're presented with the statistics which may not have been what you expected.

 

Do feel free to email one our Breast Cancer Care volunteers if you'd like to 'talk' it through over email. Tamsin had EC chemotherapy and would be happy to tell you her experience:

 

https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me/our-volu...

 

If you'd like to chat to someone over the phone who took a similar decision, feel free to call uson 0345 077 1893 and we can put you in touch with a volunteer.

 

Best wishes

Emily at Breast Cancer Care 

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Re: Decision to make ...and any advice on EC?

Just finished my chemo and I was a very reluctant starter. If I could have dodged the chemo bullet I definitely would have. I wasn't doing it right up until the first day.

 

The thing that changed my mind was my oncologist. On my first meeting with him he said to me that we had met before. 18 years ago I had kidney cancer which was treated surgically by the urologists and I lost my kidney. I had one onco appointment, which to be honest I'd forgotten about. I was told off for coming in by myself and then he told me I didn't need chemo or radio and he left me under the urologists. He'd remembered that (and put a sticker on my star chart for bringing someone with me to this appointment) and he reminded me of our conversation. Then he said to me that I knew he wasn't the kind of consultant that put people through chemo if they didn't need it and that this time I did.

 

So for what it's worth and I realise this is just one experience, if they have said you don't need it then that's good enough for me. They definitely tell you if you do. It's a pretty **bleep**ty experience and takes a lot of getting over. I'm just glad mine is behind me now and I'm not sure I'd do it again under any circumstances.

 

I cold capped succesfully btw, and I'd always say to someone to give it a go. Keeping your hair definitely helps you to put it behind you and move on xxxxxx

 

 

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Re: Decision to make ...and any advice on EC?

I've just completed 3 out of 4 ECs.  Agree it's doable.  First day I'm useless, one week of sicky and nausea and bit tired but not stopping me doing anything.  Weeks 2 and 3 OK as long as you don't pick up any additional infections.  Your choice but it's short-term and everyone is different, but I'm not finding it impossible.  Hair loss is a given though I think!

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Re: Decision to make ...and any advice on EC?

Thank you Jacq

I’ve asked for an appointment to go and see her again to discuss...hopefully she will give me some guidance and less facts and NHS Predict figures ...🤞

Thanks for your kind advice, it’s much appreciated !

Helen xx
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Re: Decision to make ...and any advice on EC?

Hi Sally

 

That sounds reassuring, thank you so much for that ! 

 

Wishing you all the very best that you will continue the same throughout... I do appreciate you taking the time to respond to this...

 

Regards

 

Helen 

 

 

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Re: Decision to make ...and any advice on EC?

Hi Thisledown,

I'm on 4x EC followed by 12 Taxol. I've done 2 EC so far with little to no side effects so it is very doable.

I don't suppose that's much help to you but I just thought I'd let you know that so far, it's not too bad.

Sally
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Re: Decision to make ...and any advice on EC?

Hi Thistle
I can understand your family’s point of view, but would really expect the oncologist to step up and guide you to the best decision.

Thinking of you
Jacq x
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Re: Decision to make ...and any advice on EC?

And unfortunately the oncologist will not (obviously) commit herself to saying which direction is best for me ... so not much guidance there I’m afraid.

This blasted thing ! 😩

Thistle x
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Re: Decision to make ...and any advice on EC?

Thanks Jacq !

My husband and daughter both want me to do whatever will give me less worry in the future - but I am stressing out about this so much I think I’ve aged 10 years already ! 😳🙂 - it’s so hard, and I do know that chemo can do a lot of damage - scared of that as I’m 64 now ...

Thank you for replying ... xx
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Re: Decision to make ...and any advice on EC?

Hi Thistledown
Sorry to hear you have such a tough decision to make re treatment.
From my own experience I would just say that chemo in itself is incredibly harsh on every system in the body and comes with its own inherent risks. I would definitely be guided by the oncologists as they see first hand the damage that chemo can cause, especially if the benefits are low.
Aside from the physical implications, it must be so hard to deal with the thought of not throwing every option at the bloody cancer. How do your loved ones feel?
I hope you come to a decision that you are happy with.
Best wishes
Jacq x
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Decision to make ...and any advice on EC?

Hello

 

Was diagnosed with Grade 2 ER + HER neg with lymph node involvement, had a TM and full ANC. After being told by two surgeons that Chemo was inevitable, I has first appointment with Oncologist yesterday..and was astonished to learn that Chemo is not (apparently) going to be of much benefit to me overall, according to NHS Predict site (I’m not sure whether to trust this though, surely it’s a bit generalised?) It will only add 3.6 % to my survival chances over next ten years ... 😞 - so do I go for it, or chance my arm on the OPTIMA trial (very likely to get selected for chemo on that) or just go straight to rads and Letrozole....

 

Absolutely agonising about this! 

 

But anyway, the Chemo regime will be 6 x EC, and I’d really welcome any advice and info on coping with EC.

 

All the best to everyone

 

Thistle