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Stage 4 bowel cancer

SimonS

A positive stage 4 story

Just wanted to share a positive story. Last Sunday I completed the London Marathon in aid of Beating Bowel Cancer and meet some fantastic people along the way. There were about 70 of us running for the charity and we all had our own motivations - personal, family, friends affected by this disease.
Mine came down to a diary entry from 2010, about 6 months after I was diagnosed Stage IV with inoperable liver mets and during chemo. For some reason I wrote 'Run London Marathon' in my diary as a target - it didn't make any sense at the time. About a year later I had a resection which was originally refused due to portal node involvement, I had a couple of years clear then a PALN met and back on palliative chemo followed by the miraculous cyberknife and last year, feeling optimistic I applied for a place in the run.
I cannot tell you how wonderful and guilty I feel to be alive to tell this and to know that sharing this story of what can be will not be for everyone with a terrible diagnosis like I had.

Beck R

It's so good to hear positive stage 4/'inoperable' stories. Well done on completing the Marathon!

CD1966

What an absolutely wonderful story @SimonS - it's so important for people on here to have these positive tales. Great work!

Pammij

Awe brilliant achievement
Well done you
Hugs sent
Pammij :x::x::x::x:

Alwyn

Fantastic achievement @SimonS well done. I just wanted to ask about your portal node involvement. I will possibly be having a second liver resection shortly but I have had to have further chemo first because of low grade uptake on the portal node. Scans indicate it's been resolved but would they take the node out during the resection? Also what did you have cyber knife for? Best Wishes :x:

Jaap

You are an inspiration @SimonS. Excellent in completing the marathon and also raising money for a good cause.
Another example of someone who challenged and defied some of their medical teams' opinions!

SimonS

Hi, sorry to hear that you have to undergo another resection. I believe (as a non-doctor!) that the issue with my portal node was the extent to which it demonstrated the spread of the disease which at the time made me inoperable. I also didn't have any clear parts of my liver. I had my hepatic portal node out and have found no issue at all with that.
I had cyberknife on a single 4cm Para Aortic Lymph Node met which was discovered two years after the completion of my post-resection chemo. I was told it was inoperable and had started palliative chemo (again!) before finding out about cyberknife on Beating Bowel Cancer. I was refused funding and my mum paid for it (£11,000) - it was done at Mount Vernon. On scans since there is still a sign of the tumour but it has been described to me as 'dead/calcified' (I'm pretty sure that's just an analogy) and it hasn't changed at all in the 2.5 years since.

SimonS
Quote from @Jaap:
You are an inspiration @SimonS. Excellent in completing the marathon and also raising money for a good cause.
Another example of someone who challenged and defied some of their medical teams' opinions!

I was ridiculous in conversation with oncology in 2009:
- You will probably be dead in 6 months and will certainly be dead in 2 years
- No, I won't
- Excuse me?
- I won't be dead in two years
- I'm afraid that is the best you could possibly hope for
- It's not long enough
- This isn't something you can really decide for yourself
- I won't be dead in 2 years

and

- Please operate on my liver
- I'm afraid we can't
- Why not?
- It is too risky
- That makes no sense, I will die if you won't
- We can't operate
- Refer me back to the surgeon
- He's already said no
- Ask him again
(this conversation was repeated for 18 months, at every appointment)

kim74

Well done @SimonS you are brilliant, never taking no for an answer, and for completing the London marathon. Gives us all a boost. Interesting to read that you were refused cyberknife I'm in the process of asking for it, my consultant is putting my case forward on the NHS, I may consider paying if I'm refused.
Best wishes
Kim :x::x:

SimonS
Quote from @kim74:
Well done @SimonS you are brilliant, never taking no for an answer, and for completing the London marathon. Gives us all a boost. Interesting to read that you were refused cyberknife I'm in the process of asking for it, my consultant is putting my case forward on the NHS, I may consider paying if I'm refused.
Best wishes
Kim

Thank you. Good luck with Cyberknife funding - things may have changed since I was refused. It's a very straight forward procedure and I had no side effects at all - walked in, got treated, walked out. (I had about a dozen scans before though, CT, MRI and PET)

Jaap

If you didn't self fund avastin in order to get your liver resection..then self fund your cyberknife to whack that distant lymph node @SimonS the likelihood is you might not have been running the marathon.
Do you ever see the oncologist/s who told you you had 6 months to 2 years to live? Just wondering if he or she blames lack of funding on NHS for the prognosis you were given?

SimonS

Yep, I was lucky to be able to find the money or I'm sure I'd be dead. Didn't ever get back in touch with the oncologist, but did have several conversations with her at the time about the issues with funding and the inconsistent approach. I was saved by aggressive treatment but the default option is not to be. This frustrated me no end. BTW I was 41 at diagnosis. Too young not to want to make every effort. I'm very lucky.

Regalo

Well done SimonS...tomrun the marathon is an amazing achievement and I am in awe of you. I am just starting on my stage 4 journey...first two oncologists said no cure, not operable but my latest visit was to the main guy who said it might be curable and an operation might be a possibility. what a difference those few more positive words have made. Like you, I have no intention of dying...I have too much to live for and can't/ won't leave my wonderful husband and family early. I gave not heard of cyber knife so I will research. Thank you for your positive post...it gives those of us with a poor prognosis so much hope. :x::x::x::x:

Demelza

OMG @SimonS , how sweet that medal must have been around your neck, fair play to you. I was just watching a programe about 2 days ago about the London Marathon, I think it was to do with depression, bur Prince William and Harry and Princess Kate we there and I got very emotional because I used to run, nothing to what you have achieved. Then I thought Maybe?. Could I? Should I think about running again, not today, tomorrow, being realistic, but you have such an inspiritional story to be told I think if I had achieved 10k I would be going around town with a loudspeaker.. Well done you, I am going back to bed happy....lol.. Best wishes Demelza

CD1966

Just loving your posts @SimonS - like you my brother was in his 40s when diagnosed at stage 4. This was 2.5 years ago and he is still fighting and not taking no for an answer. Glad to hear about your experiences with cyberknife (though not that you had to pay for it yourself) - is that treatment more common now than when you had it?

SimonS

I hope things are going well for your brother. I'm not sure if cybkernife is more widely used although I do know that they have had good responses in the cases they have accepted.

CD1966

Thanks @SimonS - we're just waiting for some further scans before my brother hopefully has an op at a specialist hospital to remove a met which has shown up in his hip, which apparently is most unusual. But good that they have a surgical option for its removal (a hip replacement!). Apart from that, from what we understood from last scans is that a couple of spots remain in his lungs which are suitable for ablation, but that's it. Probably more chemo after.

angepange

@SimonS , I was really moved by your account of what happened to you and how far you have come. Bloody well done doesn't seem strong enough really. I'm very very happy to read such a story of real hope when there had been such sadness on the forum over the last few months which has affected us all. Keep on keeping on. Thank you so much for telling us about this. Lots of love to you. Angie :x::x:

Sean

I can't tell you much i love this @SimonS !! just not having it ay. Fecking brilliant man.

Quote from @SimonS:
I was ridiculous in conversation with oncology in 2009:
- You will probably be dead in 6 months and will certainly be dead in 2 years
- No, I won't
- Excuse me?
- I won't be dead in two years
- I'm afraid that is the best you could possibly hope for
- It's not long enough
- This isn't something you can really decide for yourself
- I won't be dead in 2 years

Ally13

Hi @SimonS Fantastic story. Proof of what's possible if you don't just accept what you're told.
Best wishes for a long, happy life! :x::x:

bravenanny

Hi I read all these and they are inspirastional mine was diagnosed as T4 but with no lymph nodes infected, permanent bag so could cut a bigger margin as had gone through the vaginal wall. Feel well did nto take the precautionary chemo option as was already recovering from a double hip replacement b4 this, I am 72 next week any things I should be thinking of thank you :x::x: