Peritoneal Carcinomatosis

Fitlisa
Fitlisa Member Posts: 99
edited March 2014 in Colorectal Cancer #1
Hi All,

I havent been posting in quite a while but I am back now and hoping for some advice from what I believe to be the best source on earth.

On Nov, 6, 2004 I finished 6 months of Folfox 4 chemotherapy for what they thought was Stage III Colon cancer. I had a resection in May, 2004 and was told that the surgery was a success, the surgeon being confident that he had gotten all of the tumor, blood supply and clear margins.

On Dec. 10, 2004 I underwent laprosocopic surgery just as a sort of look around inside (I underwent 5 MRI's and 1 Pet Scan during chemo and all were clear and my CEA was always normal).

Unfortunately, during surgery the surgeon found spots on my liver and abdomen and the diagnosis of paritoneal carcinomatosis was made. I know that Kris, who posts here, also had this diagnosis if I am not mistaken.

My chart has now been sent to a Dr. Sugarbaker in Washington DC in the hopes that he will perform the surgery necessary to save my life. My oncologist told me that without this surgery my life expectancy is 6 months (I just turned 43 in Oct). I am trying to stay positive and be positive for my husband but I am hoping that someone out there has come through this. I know the surgery is massive with a relatively long recovery time. I will do anything to fight this battle, as I have so far.

Any advice or experiences you can share would be greatly appreciated.

Lisa

Comments

  • JKendall
    JKendall Member Posts: 186
    #2
    Lisa...sorry to hear the news. I'm not experienced in what you're describing, my wife and I are new to this world. (She was diagnosed with stage 4 colon cancer in October this year.) BUT...I can offer some support and encouragement along with the rest of the group. I'm sure someone here can help you out. Stay positive and keep fighting.

    Jimmy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #3
    Lisa!

    Welcome back. I am so sorry you are going through this.

    If you are talking about KrisS she did have the peritoneal mets. I am sorry to tell you though that she passed on not too long ago.

    Have you read A Cancer Battle Plan by Anne Frahm? You may want to read her testimony of healing her cancer after she was sent home to "get her affairs in order". She went through absolutely everything that western medicine had to offer and the cancer continued to choke her life. then she discovered something she hadn't tried before and it beat her cancer. check it out.

    You will be in my prayers each day. Keep us posted.

    peace, emily who always recommends www.discountjuicers.com
  • Btrcup
    Btrcup Member Posts: 286
    #4
    Hi Lisa, I can't believe you made this post. About 4 hours ago we found out that my husband has the same thing!!! I was just researching peritoneal carcinomatosis and decided to come here with the same questions. My husband will be 43 in Feb. We are in MD and his onc is sending him to John Hopkins. He will brainstorm with the surgical oncologist about a procedure called Intraperitoneal chemo (or debulking). They open you up and bathe your bowels in chemo. We are setting up a meeting for the week after Christmas at Hopkins.

    Hubby was dx Stage IV back in Feb with mets to omentum and 13/21 lymph nodes. He did 6 mos chemo (5FU, Avastin, Oxiliaplatin & Leukovorin) and was NED in July. He was admitted to hospital Dec. 5 with abdominal pain. They found scar tissue throughout his colon. They removed all scar tissue and found cancer cells all through his abdomen.

    He is still in the hospital. They just started him on liquid diet. His bowels are still not working properly. We're hoping he'll be home for Christmas.

    I am so sorry to hear this is happening to you too. I am so depressed right now, as I'm sure you are too. I don't know what to tell my children (ages 4 & 8). Please keep me posted and I will do the same.

    Linda (Baltimore)
  • Unknown
    Unknown
    #5
    Hi Lisa and welcome back. I am so very sorry this has happened and unfortunately, like Jimmy, I have no experience in this area but I do know, from reading your posts in the past, that you are a fighter and if surgery is an option, go for it. I will keep you in my thoughts and prayers and hope that all goes well.

    Lots of hugs,
    Monika
  • Fitlisa
    Fitlisa Member Posts: 99
    #6
    Btrcup said:

    Hi Lisa, I can't believe you made this post. About 4 hours ago we found out that my husband has the same thing!!! I was just researching peritoneal carcinomatosis and decided to come here with the same questions. My husband will be 43 in Feb. We are in MD and his onc is sending him to John Hopkins. He will brainstorm with the surgical oncologist about a procedure called Intraperitoneal chemo (or debulking). They open you up and bathe your bowels in chemo. We are setting up a meeting for the week after Christmas at Hopkins.

    Hubby was dx Stage IV back in Feb with mets to omentum and 13/21 lymph nodes. He did 6 mos chemo (5FU, Avastin, Oxiliaplatin & Leukovorin) and was NED in July. He was admitted to hospital Dec. 5 with abdominal pain. They found scar tissue throughout his colon. They removed all scar tissue and found cancer cells all through his abdomen.

    He is still in the hospital. They just started him on liquid diet. His bowels are still not working properly. We're hoping he'll be home for Christmas.

    I am so sorry to hear this is happening to you too. I am so depressed right now, as I'm sure you are too. I don't know what to tell my children (ages 4 & 8). Please keep me posted and I will do the same.

    Linda (Baltimore)

    Hi Linda....wow, the world does have its ways of bringing us answers just when we need them most doesnt it?? Im so sorry to hear about your husband but I am learning more and more about the condition he and I sadly share.

    The website I found to be most helpful is www.surgicaloncology.com. This site is Dr. Sugarbaker's site, the doctor I am hoping to see in Washington. He performs the exact surgery you mention...it will definitely give you more info about the procedure. There dont seem to be many surgeons in the US doing this surgery, he is one, Im sure a centre like Johns Hopkins has at least one and there is a surgeon here in Cincinnati where I am who also does it.

    Please try not to be too depressed, although I know that is just words right now. I will never, ever give up hope as Im sure you wont - we have too much to live for.

    I will keep both you and your husband in my prayers and thoughts. Please feel free to email me anytime as I think we can definitely help each other. This is quite a rare condition from what I understand we Im sure we can use all the support we can get.

    I too hope your husband is home for the holidays Linda.

    Take care
    Lisa
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #7
    unknown said:

    Hi Lisa and welcome back. I am so very sorry this has happened and unfortunately, like Jimmy, I have no experience in this area but I do know, from reading your posts in the past, that you are a fighter and if surgery is an option, go for it. I will keep you in my thoughts and prayers and hope that all goes well.

    Lots of hugs,
    Monika

    Hi Lisa--sorry I cannot be of help either but offer both you and Linda our prayers and love.
    Our very best from OZ, kanga n Jen
  • taunya
    taunya Member Posts: 390 Member
    #8
    Dear Lisa and Linda,
    I am so sorry to hear about these diagnosis(plural?). Please don't let it get you depressed it sounds as though you are both VERY well informed and making cutting edge treatment choices. I am praying for you Lisa and your husband Linda. Here are hugs to all of you.
    Love,
    Taunya
  • FRANTIC
    FRANTIC Member Posts: 106
    #9
    What is peritoneal Carcinomatosis? Is that like
    mucinous adenocarcinoma? You had 5 MRI's and it showed nothing? I am very upset about all these tests we go through and it shows nothing. Can you tell me how are you coping with all this?
  • Fitlisa
    Fitlisa Member Posts: 99
    #10
    FRANTIC said:

    What is peritoneal Carcinomatosis? Is that like
    mucinous adenocarcinoma? You had 5 MRI's and it showed nothing? I am very upset about all these tests we go through and it shows nothing. Can you tell me how are you coping with all this?

    Dear Frantic,

    Peritoneal carcinomatosis is a very rare condition, sometimes called "seeding" and yes, it is similar to mucinous adenocarcinoma. Its when cancer cells attach to the lining of the abdomen and organs such as the liver. To learn more, go to www.surgicaloncology.com.

    I too had 5 MRI's that showed nothing. That is because the seeds are mainly microscopic and wont show up, even Pet scans only show lesions over 1cm in size. My diagnosis was made visually during a laproscopic surgery by my surgeon.

    Unfortunately, our lives, all of us who are survivors, must ride this rollercoaster forever. As for how we cope, I can only speak for myself. I remain totally positive and convinced that I will overcome whatever I have to = I dont have a choice. I do a lot of meditating, guided imagery, reading, exercising, eating well and cultivating positive relationships.

    Sadly, the tests wont stop - for the rest of our lives tests are necessary - we cant control or stop them so we need to just accept them as a way of life.

    I hope this advice helps...

    Lisa

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