johnsfo- a post for you from charliesangels

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Patteee
Patteee Member Posts: 945
edited March 2014 in Colorectal Cancer #1
Hi John- found this post from charliesangels and wanted to make sure you saw it! dated 12-27

post below from this thread http://csn.cancer.org/node/177393#comment-761283


For johnsfo

Hi there John,

Hopefully you can help me shed some light with my fathers staging, here is a brief history;

13 years ago my father had a rectal tumor removed. He was stage 2 and had chemo and radiation and was given the all clear. He remained cancer free up until now.

Around 18 months ago he started having sciatic pain and had some tests done which showed some degeneration in the bone which they put down to aging and left it at that. The pain got worse and he had an MRI done 3 months ago which showed a sacral tumor in the S1 and S2(2cm) and a very small tumor at his anastomosis site (1cm). His oncologist told him it was a rectal cancer recurrence and said it was inoperable and he would be ok for 6-12 months as he was so healthy, but he would eventually subcum to this disease.

He said as he had his max radiation years ago he could not have anymore and chemo would only help control his cancer for a while.

After doing some research I happened across one of your posts about cyberknife (cyberknife is not available in Australia) and I had not even heard of it nor had anyone I knew. Our closest cyberknife clinic is in Malaysia so after reading your posts and doing more research I hopped on a plane with my Dad's scans and met with a doctor at the wijaya international medical centre who said he is treatable with Cyberknife, 3 weeks later we returned to Malaysia and my father had treatment.

We now have a new oncologist who is far more aggressive and we are hoping that after the 6 months of chemo he is about to have will help and then he can have surgery.

Firstly, I wanted to let you know that you have helped someone you never even met immensely, possibly even saved his life!!!!!!! For that, I thank you very much.

Secondly, as my father sounds to be in the same position as you I was wondering what stage of cancer you are considered to be in? He has the one tumor in the sacrum and a second very close by at his anatomosis site. He has none LN involvement and no other mets. His CEA before cyberknife was 33. Is this stage 4? It's the one thing none of the doctors have told us, what stage his is at and I don't want to ask during his onc appointments as I want him to stay positive, however I would like to know:)

Many thanks in advance and I wish you all the best in your fight:)

x

Comments

  • johnsfo
    johnsfo Member Posts: 47
    #2
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    Good to hear your father is doing well!
    I'm so glad to hear that your father is doing well. What you describe of the cyberknife results are very similar to mine: my pain has decreased significantly and my CEA dropped from 60 before the treatments to 12 after them. I do not know how my cancer is staged right now, but I think it is probably still 4. Like your dad, the scans show what seems to be cancer at the anastomosis and the cyberknife did not treat that area.

    Here's a little more information about the effects of cyberknife on me that may be helpful for you and your dad to know.

    A few days after the treatments I was hospitalized with a bowel blockage. That was successfully treated and I was released, but about 7 weeks later I was back in the hospital with another blockage. This time the only possible treatment was a colostomy, which I had on Dec. 1. The surgeon suggested that since he was going to open up the pelvic area he might as well try to get a look at the cancer at the sacrum and anastomosis and try to remove some of it. What he found, though, was that the radiation had so damaged the colon at the anastomosis and the surrounding tissue that he couldn't get to the tumor. (He described the area between the incision and the sacrum as looking like it had been shrink-wrapped in concrete.)

    I'm doing well now, recovering my energy and getting used to the colostomy, and talking with docs in the next few weeks about what to do next.

    The radiation may have very different effects for your father, and my best wishes for his continuing good health. If he pursues future surgery, though, it might be good to ask the doctors about how they would deal with hardened and brittle tissue caused by radiation damage if they encounter it.

    Thanks too for your note. I'm glad my posts were useful for you and your father.

    Best wishes for an excellent 2010!

    John
  • charliesangel
    charliesangel Member Posts: 26
    #3
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    johnsfo said:

    Good to hear your father is doing well!
    I'm so glad to hear that your father is doing well. What you describe of the cyberknife results are very similar to mine: my pain has decreased significantly and my CEA dropped from 60 before the treatments to 12 after them. I do not know how my cancer is staged right now, but I think it is probably still 4. Like your dad, the scans show what seems to be cancer at the anastomosis and the cyberknife did not treat that area.

    Here's a little more information about the effects of cyberknife on me that may be helpful for you and your dad to know.

    A few days after the treatments I was hospitalized with a bowel blockage. That was successfully treated and I was released, but about 7 weeks later I was back in the hospital with another blockage. This time the only possible treatment was a colostomy, which I had on Dec. 1. The surgeon suggested that since he was going to open up the pelvic area he might as well try to get a look at the cancer at the sacrum and anastomosis and try to remove some of it. What he found, though, was that the radiation had so damaged the colon at the anastomosis and the surrounding tissue that he couldn't get to the tumor. (He described the area between the incision and the sacrum as looking like it had been shrink-wrapped in concrete.)

    I'm doing well now, recovering my energy and getting used to the colostomy, and talking with docs in the next few weeks about what to do next.

    The radiation may have very different effects for your father, and my best wishes for his continuing good health. If he pursues future surgery, though, it might be good to ask the doctors about how they would deal with hardened and brittle tissue caused by radiation damage if they encounter it.

    Thanks too for your note. I'm glad my posts were useful for you and your father.

    Best wishes for an excellent 2010!

    John

    Thank you...
    Hey there John,

    Thanks so much for replying!

    It's been 3 weeks (nearly 4) since he had cyberknife and no ill effects so far, let's hope it stays that way. He has had a massive reduction in pain but still had days when he has trouble walking:(

    I have been watching this forum for a while now, and I will continue to do so as I am interested to know how your doctors proceed with your care...

    I wish you all the best and sincerely hope things go well!!

    Warmest regards,

    Caroline.
  • charliesangel
    charliesangel Member Posts: 26
    #4
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    Hi Patteee!
    Hi Patteee,

    Thanks so much for passing on the message, your amazing!!!!!!!!!!

    All the best:)

    Caroline
    x

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