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Back after 7 years- damn! (+cyberknife query)

steved
Posts: 835
Joined: Apr 2004

I haven't posted here since around 2006 as leaving this board was part of my recovery and getting on with normal life. It feels weird to be back but have just been told I have a recurrence and need some support and advise.

I was diagnosed 2004, age 31, with low rectal cancer and had the usual treatments of preop chemo/radiotherapy, mesorectal excision and post op chemo with a later reversal of my stoma. Have remained well and clear on regular CTs/ colonoscopies till last October when symptoms of pelvic pain then spreading down my leg occured. Have now found is a recurrence in the pelvis that is currently not operable due to spread to the side of the pelvis where large vessels sit.

Have been recommended to have chemo and radiotherapy again and consider cyberknife before a review for possible surgery. As we are in the UK there are some funding issues re-cyberknife but at present am just trying to find out more about its use in rectal cancer recurrence.

Also just trying to cope in general. Two kids (3 and 6), a mortgage, a brilliant wife, work, family back in NZ etc makes it all seem so overwhelming and quite different than last time. Still recognise the old names here (see crazylady is still around!) and may be back in here for a while.

Appreciate any knowledge people can share (in particular evidence in rectal cancer I can use for pushing for funding) and support in general always welcomed.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Wow, Steve

Your post shows me what I've been thinking for a long time - that cancer can still strike when you think that you're long done with it. While the medical community recognizes 5-years with no recurrences as the standard, your case shows what can still happen to any of us at any given time.

Obviously, this is a huge shock for you and your family - it would be to anyone to have gone this long and have it come back.

I did cyberknife on the liver, but have heard good things on how it can now be used for rectal tumors as well.

Sorry I could not help here, but just wanted to touch base with you.

-Craig

crazylady
Posts: 544
Joined: Jun 2004

Hi Steve,
I remember you. I'm sorry that you are back after 7 years cancer free, but glad that you had those 7 years. I know you will be strong and handle the treatments well.
Take care,
Jamie

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Steve, my colorectal diagnosis was in June 2010 and since being on this board have had so much support, information, inspiration. I am on the downward spiral of my 12 chemo treatments with #8 coming up next week. I did the radiation/chemo last summer, 2 surgeries in the fall. Although I would wish to us all to finish our treatments then live NED the rest of our lives, I am so happy you had 7 years of it. Sorry to see you have to come back, but what a great support group this is.

Love and hugs, Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Steve,

Welcome and sorry you have need to be back on the board again. My stage IV rectal cancer was dx'd in 8/07 & I've been coming on this board for almost 2 years now.
I also had a rectal tumor recurrence this past year and was evaluated for cyberknife on it. I was told by the cyberknife people that they really don't like to do cyberknife on the rectum because the tissue is thin there & the cyberknife could end up causing a perforation (hole) in the rectum in the place it removes the tumor from. If that happened, I would need emergency surgery. My rectal tumor location is about 3 cm above the anal sphincter. Perhaps location effects whether cyberknife would be recommended for it or not. Maybe if yours is up higher, well perhaps the tissue isn't as thin there- I don't know. It would still be worth evaluating, but I just wanted to let you know what I was told and why I didn't go forward with the cyberknife. I was told by the cyberknife radiation onc and by two different oncologists that the better choice would be surgical removal. I actually have not done that either because I need to continue chemo & you can't have surgery without stopping chemo for a few weeks & I just can't afford to stop the chemo due to tumors elsewhere. It isn't large and isn't causing an obstruction, so we are just keeping an eye on it.

Best wishes for you in finding something & in having to go through all this again-
Lisa

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I had Cyberknife to the right lung. 100% success but did get radiation pneumonia from it. BUT...that too went away so all good. Wishing you all the best . You take care.

Jennie

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, I'm so sorry you have a recurrence after being well for so long. So disheartening! I pray that it will be taken care of, and you will have so many more happy years with your family.

*hugs*
Gail

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

From another oldtimer. Hope they can sort out a successful treatment for you. Ron.

steved
Posts: 835
Joined: Apr 2004

Thanks to all that have replied. It reminds me how supportive this place is and how much valuable advise and experience is here.

I appreciate all the responses and well wishes. Will just need to wait and see what the cyberknife people say and will keep in touch on the board.
steve

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Dang Steve!

I am so sorry to hear this and please keep us posted to what the cyberknife folks say. I remember when you had your first son and how excited you were so congrats on that second one too!

My memory tells me you were determined and focused 7 years ago so I know you will be the same this time around AND that you will be as successful as you were then too.

You have taken some wind out of my sail today but know that I'm sending positive thoughts across the pond to you and your family!

Lisa P.

taraHK
Posts: 1961
Joined: Aug 2003

Hi Steve -- I remember you from before -- I've been on this board since Dec 2003.

I am so sorry to hear about your recurrence. What a blow.

I've had several recurrences in the past 8 years -- but still alive and kicking.

I don't know anything about your specific situation -- my relapses have been in lung and now bone. But I do know that the science keeps moving forward in leaps and bounds. I'm having radiation currently for some bone mets (chemo too) and the radiation is totally different from 8 years ago (I'm using tomotherapy now). New chemo "cocktails" as well. I hope everything unfolds in the best possible way for you.

Good luck and best wishes

tara

steved
Posts: 835
Joined: Apr 2004

Thanks again for the posts- particularly those that I remember from years ago. Great to see so many still fighting and thriving.

It has been hard for me to post knowing that it may actually be a negative thing for people fighting this illness to hear of relapses so long after what I had come to think of as a permanent recovery. I do appreciate people's support and advise here.

steve

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi steved,

Sorry you are here, but your story strengthens my resolve.
thanks heaps for sharing and caring to let us know the real realities
of belonging to this exclusive but ever growing colorectal club.

It proves you cannot take your eye off the ball and this is a whole of life fight.

Dammit is just too mild, so I appreciate your restraint.
As you know its time to get serious.
goodluck with the specialists. your family sounds great.
I have two kids as well 5 and 9.

I'll be happy to make my kids 100th birthdays. We don't want to set the bar to low.
Do we.

all the best and welcome back,

Pete

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Steve,

I also remember you, sorry that you have to deal with all this again. My thoughts are with you.

Congrats on the new addition, I remember when you had the first one.

Maureen

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Welcome back.. (Sad to say)
I to had a tumor in lower rectum, best option for me was to have total removal and a perm ostomy. Adjusted to it well, doing 11th rd of mop-up chemo tomorrow.

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AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry you have had a recurrance. You already know you have come to the right place. Good luck with your treatment plan.

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