I have some questions

CanadaSue
CanadaSue Member Posts: 339 Member
edited March 2014 in Colorectal Cancer #1
Hi all,
I have posted here once before, but I come here just about everyday to check things out. My prayers are with you all, especailly you Mindy. I also lost my father some years ago to cancer
Kathi you make me laugh when I need it most.

I come to this site when I am at work as my husband does not believe in sharing what he is going thru. Grab a coffee as this may get long winded, and please except my apologies now before I start.

My husband was diagnosed on Jan 4th, 2006 with stage 4 colorectal cancer. He had surgery a couple of days later to remove most of his colon: the original surgeon said he had mets to his peritoneal wall with nodes involvement. In March we saw the oncologist, who said he would be a perfect canidate (48 years old) for this procedure called the "Sugar Baker Protocol.

He underwent this 9 hour surgery in April, they had to remove the rest of his colon, gallbladder, a few nodes, along with the majority of his peritoneal wall, as well he also now has an Ileostomy. They then did chemo washes to the abdominal cavity for 5 days straight. The surgeon told us he got everything that he could see, but that he should go through 6 months of Chemo treatments as insurance. My hubby has now completed 2 rounds of the treatments, but the treatments have been put off because his white count is down to 1.0

In the mean time they also did another CT Scan, and the results were not what we were expecting. They have found an enlarged node higher up in his chest towards his back, as well as a mass on one of his kidneys. He is scheduled for an ultrasound in a couple of weeks to check out the kidney, to see if it is a mass or just a cyst.

My big question would be, after reading on this site and many others since this started, I have never seen anyone post that colorectal cancer could or would spread to the kidneys. Has anyone ever heard of this or can I just hope it is a cyst.
I have read where the most likely places it mets to is the liver or the lungs. Is there anywhere else it may spread to?


Once again sorry for being so long winded!

Have a great day all, and my prayers are with you all!

Sue

Comments

  • mindy10
    mindy10 Member Posts: 182 Member
    #2
    Hi Sue, my dad had what they thought where tumors in his kidneys but when they did a cat scan they said it was just cysts. Im not sure if the cysts where there before the cancer or not. Mindy
  • Kanort
    Kanort Member Posts: 1,272 Member
    #3
    Hi Sue,

    I know that most of the mets that I have heard or read about typically have been to the liver or lungs, but I am sure that others here will answer with more accurate data than me. However, I also think that in people over 40 that kidney cysts are quite common. I know that on several of my CT scans a cyst on my kidney has been noted.

    Your husband has been through so much. I'm praying that the ultrasound will determine that this is a cyst.

    Hugs to you and your husband,

    Kay
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Sue -

    I don't mean to frighten you, but hereditary colon cancer can spread to the kidneys. My aunt - who has the HNPCC gene - has lost one kidney and is currently maintaining NED in the other after surgery. Your husband is young, that's an indication that he could possibly havethe gene. In all likelyhood, it's more probably a cyst than it is cancer, but to answer your question truthfully; yes. CRC can and does spread to the kidneys - but it's not nearly as common as the lungs or liver.

    Keeping you both in my prayers.

    - SB
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    #5
    Hi Sue:
    Where in Canada are you from?..my husband also is stage 4 with mets to liver and lungs..he also has a "cyst" in the kidney (detected on a CT..and very common...
    What chemo is he on??
    Bev (fellow Canadian)
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    Aw, Sue, thank you.
    I have not heard of mets to the kidneys....but I see my onc on Wed and will pick her brain...she is GREAT (I switched...hated my other one). I have liver polyps...but the surgeon said they were nothing...but I can understand you all worrying, I STILL do a little.
    I WILL say that one of my friend's hubby (no cancer) had a mass on his kidney...well, turned out to be IN his kidney...large stone...blasted, now he is fine.
    You KNOW my lecture on HOPE...that makes all the difference...I'm sending warm, fuzzy vibes to you both....
    How is his eating going? Is he doing the healthy, natural stuff? Of all the changes in my life, I think this is the biggest one for me...I started during chemo and felt better...also, water...his body is soooo full of junk...can't hurt...
    Oh, Sue, I wish I could make it all better with a joke. But, well, sigh...
    Know that I am praying for both of you...
    Hugs, Kathi
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #7
    spongebob said:

    Sue -

    I don't mean to frighten you, but hereditary colon cancer can spread to the kidneys. My aunt - who has the HNPCC gene - has lost one kidney and is currently maintaining NED in the other after surgery. Your husband is young, that's an indication that he could possibly havethe gene. In all likelyhood, it's more probably a cyst than it is cancer, but to answer your question truthfully; yes. CRC can and does spread to the kidneys - but it's not nearly as common as the lungs or liver.

    Keeping you both in my prayers.

    - SB

    Thanks SpongeBob, I would rather have the truth, and know what we are facing from the start.
    Thanks again

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #8
    oneagleswings said:

    Hi Sue:
    Where in Canada are you from?..my husband also is stage 4 with mets to liver and lungs..he also has a "cyst" in the kidney (detected on a CT..and very common...
    What chemo is he on??
    Bev (fellow Canadian)

    Hi Bev,

    We live just outside of Edmonton.

    He has a central line, and the drugs he is receiving are:

    5FU
    Leucovorin
    Irinotecan

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #9
    KathiM said:

    Aw, Sue, thank you.
    I have not heard of mets to the kidneys....but I see my onc on Wed and will pick her brain...she is GREAT (I switched...hated my other one). I have liver polyps...but the surgeon said they were nothing...but I can understand you all worrying, I STILL do a little.
    I WILL say that one of my friend's hubby (no cancer) had a mass on his kidney...well, turned out to be IN his kidney...large stone...blasted, now he is fine.
    You KNOW my lecture on HOPE...that makes all the difference...I'm sending warm, fuzzy vibes to you both....
    How is his eating going? Is he doing the healthy, natural stuff? Of all the changes in my life, I think this is the biggest one for me...I started during chemo and felt better...also, water...his body is soooo full of junk...can't hurt...
    Oh, Sue, I wish I could make it all better with a joke. But, well, sigh...
    Know that I am praying for both of you...
    Hugs, Kathi

    HI Kathi,

    Thanks!

    Yes my hubby has changed his diet for the better.
    He is getting a steroid for nausea, and that really helps with his appeite. Infact he has gained back the 30 pounds he had lost.

    I keep you all in my prayers!

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #10
    CanadaSue said:

    Hi Bev,

    We live just outside of Edmonton.

    He has a central line, and the drugs he is receiving are:

    5FU
    Leucovorin
    Irinotecan

    Sue

    Hi Bev,

    I am sorry I forgot to ask where you live.

    Sue
  • spongebob
    spongebob Member Posts: 2,565 Member
    #11
    CanadaSue said:

    Thanks SpongeBob, I would rather have the truth, and know what we are facing from the start.
    Thanks again

    Sue

    Sue -

    Guess what! I got back the results of my CT scan from a week or so ago this morning and I also have a cyst on my kidney. Well, there ya have it. My plan (don't really care what my doc's plan is at the moment!) is to just watch it for a while. I plan to get another CT in 3-6 months and see if it grows at all. So there!

    Cheers

    - Bob
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #12
    spongebob said:

    Sue -

    Guess what! I got back the results of my CT scan from a week or so ago this morning and I also have a cyst on my kidney. Well, there ya have it. My plan (don't really care what my doc's plan is at the moment!) is to just watch it for a while. I plan to get another CT in 3-6 months and see if it grows at all. So there!

    Cheers

    - Bob

    BOB,

    Great News! Keep up the good work!

    Sue
  • EFP18
    EFP18 Member Posts: 4
    #13
    Hi Sue!

    My father actually had colon cancer spread to his kidneys, but it was because the tumor had initially burst the intestines and attached to the appendix, so there were tiny cancer cells that stayed in his that area after the surgery. He ended up having one kidney removed two years later, as the new tumor inhibited his kidney function. Every situation is different, but if you have any specific questions about it, please let me know. I'll do my best to get you answers based on our experiences. I know what you mean about your husband not wanting to share his experiences - my dad is the same way. I wish he'd come on here and see how many other people are in his shoes - I know I get strength from reading about everyone's amazing abilities to stay positive, and I know he would gain so much from this as well. To the rest of you - thanks for being so amazing, your positive attitudes have helped me through more than one rough day!
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    #14
    Hi Sue:
    We are now in the Niagara Region but used to live in Calgary..you are so lucky being part of the excellent Alberta health care system!!
    My husband first was on the coctail your husband is on but has moved on to xeloda and oxaliplatin which he seems to tolerate better (the irinotecan was horrible for his appetite..he lost 50 lbs but now on the new mix he is starting to gain it back slowly.
    Have they tried neulasta to increase your husbands counts?
    Bev
  • vinny3
    vinny3 Member Posts: 928 Member
    #15
    Hi Sue,

    Sorry to hear about your husband's problem. You are right that colorectal cancer typically has mets to the liver or lungs if it spreads to distant spots. The hereditary gene factor could also be a problem. But you mentioned that they found peritoneal mets at the time of surgery. That means it was essentially floating free in the peritoneal cavity and could spread to any organ there including the kidneys. They should be able to tell somewhat by the change in the scans as I assume he had all that scanned originally. If there was no mass or cyst in the kidney it is likely a met now if it has been a short time in between scans. But we will pray that it is not because as others noted many of our organs develop cysts.

    ****
  • finner
    finner Member Posts: 230 Member
    #16
    Hi Sue
    If its any help to you, a couple of months ago, I had extreme pain around my kidney area. Couldn't sleep at night it was so bad. Went for exploratory surgery, but by the time this happened the pain had died down consideraby. However they had found a cyst using some kind of a picture scan thingamajig prior to the exploration. Seems the cyst just burst all by itself. Anyway, am just letting you know that kidney cysts are quite common for people on chemotherapy. Possibly because the kidneys have to work so much overtime. Godd luck to you and your husband.


    XXXXXX
    Margo
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #17
    oneagleswings said:

    Hi Sue:
    We are now in the Niagara Region but used to live in Calgary..you are so lucky being part of the excellent Alberta health care system!!
    My husband first was on the coctail your husband is on but has moved on to xeloda and oxaliplatin which he seems to tolerate better (the irinotecan was horrible for his appetite..he lost 50 lbs but now on the new mix he is starting to gain it back slowly.
    Have they tried neulasta to increase your husbands counts?
    Bev

    Hi Bev,

    Yes we are lucky to be within the Alberta Health care system. The only drugs we have to pay for our the anti-nausea.

    I am originally from Kenora, so I know Ontario is quite beautiful.

    And no they have not used anything as of yet to bring the white count up. I would; however assume that if does not come up by Friday that they will.

    Take care!

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #18
    vinny3 said:

    Hi Sue,

    Sorry to hear about your husband's problem. You are right that colorectal cancer typically has mets to the liver or lungs if it spreads to distant spots. The hereditary gene factor could also be a problem. But you mentioned that they found peritoneal mets at the time of surgery. That means it was essentially floating free in the peritoneal cavity and could spread to any organ there including the kidneys. They should be able to tell somewhat by the change in the scans as I assume he had all that scanned originally. If there was no mass or cyst in the kidney it is likely a met now if it has been a short time in between scans. But we will pray that it is not because as others noted many of our organs develop cysts.

    ****

    ****,

    When my husband had his last surgery, they did a hot Chemo wash. This entailed swishing Chemo that was heated to 42 celious, within the abdominal cavity. they left 4 tubes in him, and he had the hot Chemo inserted thru the tubes for 23 hours, 1 hour dry then they would start over again, this went on for 5 days. This they assured us would get rid on any floating cells.
    Therfore I am hoping it is just a cyst.

    My prayers are with you

    Sue

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