12 - 18 months prognosis and 2nd opinion

[Blondie75]

I posted last week and thank you to every one for your replies about my prognosis been given to me at the QE in B'ham. I have a 2nd opinion at a different hospital and I have an e-mail from the Christie in Manchester. I would not be a candidate for cytoreductive surgery with hipec as it's a ewing sarcoma and theirs no evidence that it would control the disease. My primary tumour (ewing sarcoma) is on my colon, mets in my peritoneum and a new met on my bladder. I've got an appointment with the Christie on 27th Nov to talk about my options etc. Is their any body on here with the same cancer and any ideas I would be able to go for to try and control the cancer?

Debulking surgery, would that work?

Immunotherapy?

Not givibg up the fight. I have to carry on fir the sake of my children (10 & 13)

Nicci xx

[lynn6156]

When you go I'd ask about proton beam therapy....I'm sorry I don't know if they use if for your type of tumour but it's a targeted beam and they have a machine at Christies - it's worth a mention. Maybe you could have surgery and radiation of some kind. There's gotta be something and they are the people to know. I think you'll probably have to grit your teeth and hang on for the appointment - not long now!

Lynn

x

[Blondie75 in reply to lynn6156]

Thank you. Is that the plasmajet? I've heard of that one from a member on here. Which they have at the Christie. Never been offered radiation, but another option I will ask about. There must be something they can do xx

[lynn6156 in reply to Blondie75]

I think plasmajet is different so that's another option....

Lynn

x

[Blondie75 in reply to lynn6156]

Thank you xx

[Lily-Anne]

It greatly depends what they can offer not just in terms of treatment but how effective it will be. I turned down Caelyx with an 18/20% success rate as it seemed a lot of stress for my body for a fail rate of 80/82%. I had some mets and a significant tumour in my bladder/pelvis. These are currently stable. So it depends what you want. There is no 100% foolproof treatment so it’s better to weigh up the odds. Side effects debilitate the body causing more harm to your already damaged immune system. So personally I would explore non chemo choices

Avastin? Letrozole? Immunotherapy?

The doctors don’t have a crystal Ball and all this hold their finger to the wind and pass on the prognosis is damaging

You should be enjoying every moment because cancer or not. Tomorrow is promised to nobody.

It’s so tough when you have children but positivity and not thinking about predicted outcome is half the battle

LA xx

[Blondie75 in reply to Lily-Anne]

Thank you. Are you on any treatment now? My last chemo session was in July. All stayed stable on chemo. Had a scan at the end and a month after, then another in Nov and in 3 months all tumours have grown, 1 new met and the primary tumour on my colon grew 1cm, from 33mm to 43mm. A 30% increase 😦 I hope you're doing ok xx

[Bettyxxx]

Hi Nicci

A friend of mine had a similar journey to you she had an original small bowel tumour which gave her scattered peritoneal mets. She had Hipec done at the christie, which is not for the faint hearted as its a big op and slow recovery. She was a lot older than you i suspect as her kids are grown up like mine x. She was initially told she had 6 months before she went to the christie but she got 5 good years. She latterly had some radiotherapy. I know its not a cure but as the others say the future is not guaranteed for anyone. It might not end up being your choice but I definitely think it is worth a discussion with them, and I thought it might help to hear that story xx good luck in your journey and keep fighting xxx

Love Diane

[Blondie75 in reply to Bettyxxx]

Thank you. I wanted cytorductive surgery and HIPEC, but the Christie won't do it for ewing sarcoma's xx

[Bettyxxx in reply to Blondie75]

So sorry Nicci

I did my dyslexic thing and misread your post 🙈 My second surgery and second opinion was with professor F at the hammersmith in London. She is known for tackling ovarian cancer often considered inoperable by others But i dont know if she does your particular type of cancer xx

Good luck

Diane

[Orsolini]

Hi Nicci - I had more surgery, huge difficult op. Still all grew back and currently nothing working. I agree with Lily Anne, the more treatment we have the weaker we become! Wait and see what they say, there will be options. Xxx

[Blondie75]

Don't realky want chemo if I'm hobest as I think it'll maje me go quicker. But if it holds the tumours back, then I'll have to as I can't do nothing xx

[thomas62]

HI Nicci,

It might be worth asking for a 2nd opinion with the lovely Prof.F. in London. She operated on me when the Christie refused. M y tumour was on the bowel although not a Ewings Sarcoma. Might be worth a look. Best wishes.