New to this and scared

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MissMigi
MissMigi Member Posts: 8
in Colorectal Cancer #1

Hello,

My 34yr old boyfriend of 8 yrs was just diagnosed with stage IV colorectal cancer that has spread to his peritoneal wall. He also has severe Crohns disease that he has been dealing with for about 16yrs, for which he never required surgery and which is the main suspect of having caused the cancer. The oncologist decided to wait 2 weeks after initial diagnosis to start chemo because they wanted to get his Crohns under control first (with Prednisone and Remicade), which so far has worked wonderfully in getting the Crohns disease part of the battle under control. He is finally having normal bowel movements after 18yrs of dealing with severe stomach upset. We just finished the first round of chemo today (to and have an appointment with the Hipec specialist in 2 weeks. We are hopeful that he will be a candidate for Hipec; specially since his the cancer seems to only have spread to the left side of the wall so far and chest scans were clear, also no other organs show mets. I am petrified and scared of his prognosis and some days struggle just believing that we are going through this. We were just starting to renovate our place and were talking about starting a family when he got diagnosed. He has now started to build up fluid in his stomach cavity, and will have to get it drained next week. The fluid build up is making him uncomfortable and I dont know how to help. I need some light, some info on survivors from this type of cancer. We are positive that will beat this, but on days like today I start to feel like Im drowning...

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  • abrub
    abrub Member Posts: 2,174 Member
    #2
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    You say colorectal cancer

    What is the origin?  Mine is appendiceal, with a lot of peritoneal spread.  Glad he's seeing a HIPEC specialist.  Surgery and IP chemo (not heated, but same idea as HIPEC) have worked well for me.  I'm 8 years out from m diagnosis.

    Speicalists are most important with the peritoneal spread.

    Alice

  • MissMigi
    MissMigi Member Posts: 8
    #3
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    abrub said:

    You say colorectal cancer

    What is the origin?  Mine is appendiceal, with a lot of peritoneal spread.  Glad he's seeing a HIPEC specialist.  Surgery and IP chemo (not heated, but same idea as HIPEC) have worked well for me.  I'm 8 years out from m diagnosis.

    Speicalists are most important with the peritoneal spread.

    Alice

    The original mass is in his

    The original mass is in his colon. We are beyond astounded by the diagnosis, as he has been getting regular colonoscopies and ultrasounds for the last 10 years due to his Crohns. Nothing abnormal besides inflamation due to the crohns was wver found. Then in he had what we believed to be a flare up.of crohns in May, and by chance the Dr decided to take a biopsy of his stomach cavity. Lo and behold stage IV colorectal cancer. 

    I keep searching for stage IV survivors that have had spread to the peritoneal wall. The oncologist said chemo will not be a cure, but they are discussing our case with surgeons. So far, the oncologists are acting so relaxed and non chalant its almost scary. I want them to hit this cancer as agressively as possible! 

    Thank you for giving me hope to believe that the love of my life will beat this. Your story of surviving this for 8yrs gives me renewed faith that he can make it through this.

    Any more survivors with peritoneal involvement out there??

  • ron50
    ron50 Member Posts: 1,723 Member
    #4
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    MissMigi said:

    The original mass is in his

    The original mass is in his colon. We are beyond astounded by the diagnosis, as he has been getting regular colonoscopies and ultrasounds for the last 10 years due to his Crohns. Nothing abnormal besides inflamation due to the crohns was wver found. Then in he had what we believed to be a flare up.of crohns in May, and by chance the Dr decided to take a biopsy of his stomach cavity. Lo and behold stage IV colorectal cancer. 

    I keep searching for stage IV survivors that have had spread to the peritoneal wall. The oncologist said chemo will not be a cure, but they are discussing our case with surgeons. So far, the oncologists are acting so relaxed and non chalant its almost scary. I want them to hit this cancer as agressively as possible! 

    Thank you for giving me hope to believe that the love of my life will beat this. Your story of surviving this for 8yrs gives me renewed faith that he can make it through this.

    Any more survivors with peritoneal involvement out there??

    Hi MM

            I have had problems with irritable bowel all my life. None of my gps ever decided to go with a colonoscopy to check it out. My brother is six years older . He has been having scopes most years for the best part of forty years. His diagnosis is ulcerative collitis and proctitis. He is regularly put in for endoscopies and has a dx of Barretts oesophigitis . He is 71 now and his doctors are amazed none of it has turned to cancer. During his many scopes numerous polyps have been found and biopsied. It was not until I was dxed with colon cancer at age 48 that he decided to tell me of his medical history. Had I been told earlier I may have avoided the late satge that I was at (stage 3c into 6 nodes). He is lucky that his conditions have responded well to sulfasalazine with occassional hits of prednisone. I am now 65 and six months past 16 years of cancer free survival. My best wishes for a successful intervention and treatment, Ron.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #5
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    I can't add to the

    I can't add to the conversation but I can relate to your fear and it really does feel like drowning.  Keep moving forward day by day and working on getting him into a routine with treatment and things will feel better little by little over time.  Hang in there, Helen

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