My husband just diagnosed with Stage 4 colon cancer....

gizzyluv
gizzyluv Member Posts: 143
edited February 2013 in Colorectal Cancer #1

Hello everyone, my name is Kris. My husband Jason was just diagnosed with Stage 4 colon cancer. I will tell you all what I know & would really appreciate any feedback you might have. He is 42, & has been experiencing digestive issues for about a year & a half now. We don't have insurance since he was laid off from work, so even though he made a couple of trips to the ER there was never a CT Scan, X-ray or anything done. They told him the first time it was Gastritis & sent him home with Pepcid. The second time (back in December) he almost fainted & was taken to the ER, it was then he found out he was anemic, & the colonoscopy was ordered. He had the Colonoscopy done this past Tuesday, it was then a large tumor was discovered in the upper right side of his colon. Today he went for a CT Scan & chest x-ray, which showed no problems in the chest x-ray, but the CT Scan showed that he has 1 spot on his liver. His dr. hadn't actually seen the picture of the liver so he wasn't sure where in the liver the spot is located, we will find that out on Monday. He goes then to get scheduled for the colon surgery. I'm just still trying to wrap my head around the idea that my husband has CANCER....I'm in shock I guess. Anyway, I would really appreciate any help that any of you can offer, any "good outcome" stories would certainly be a blessing right about now. I know the lord is in control, but like I said, some good outcome stories would be welcomed....Thank you in advance! And God Bless.....Kris

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Comments

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    Hi Kris,
    I am sorry you are

    Hi Kris,

    I am sorry you are where you are but glad you found us. My husband was diagnosed with stage lv two years ago today (rectal with many mets to liver). It has been a tough road with lots of learning. I always thought that the first thing you do is surgery but it was chemo for my husband because he was not operable at time of diagnoses. My husband did thirteen treatments and then had colon resection with temporary ileostomy, rfa on some of the mets and then resection of 65% or liver. I am happy to say that we are at NED at this time (no evidence of disease).

    Hang out here for support and don't give up, there is hope.

    GOD's blessings to you and Jason

    Brenda

  • gizzyluv
    gizzyluv Member Posts: 143

    Hi Kris,
    I am sorry you are

    Hi Kris,

    I am sorry you are where you are but glad you found us. My husband was diagnosed with stage lv two years ago today (rectal with many mets to liver). It has been a tough road with lots of learning. I always thought that the first thing you do is surgery but it was chemo for my husband because he was not operable at time of diagnoses. My husband did thirteen treatments and then had colon resection with temporary ileostomy, rfa on some of the mets and then resection of 65% or liver. I am happy to say that we are at NED at this time (no evidence of disease).

    Hang out here for support and don't give up, there is hope.

    GOD's blessings to you and Jason

    Brenda

    THANK YOU

    Brenda, THANK YOU so much for the encouraging words! It's stories like this that I was hoping to find on here. As I said in my original post, we really don't know that much at this time, just that he is in Stage 4 & he has a "spot" on his liver. The doctor DID say that the colon surgery would be first, so I don't know what that means, if it's a good sign or not, but anyway, that's what's gonna happen first. One question I have that maybe you can answer....I keep seeing "colorectal", but Jason's tumor is no where near the rectum, it's in the upper right part of the colon. Is that still considered "colorectal?".....Just something I was wondering about. I will post on here what we find out Monday. PLEASE pray for Jason (Jason Roach, we're in Maryville, Tn.) Thank you again & I'm sure we'll chat more! =) Take care & God Bless, Kris

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    gizzyluv said:

    THANK YOU

    Brenda, THANK YOU so much for the encouraging words! It's stories like this that I was hoping to find on here. As I said in my original post, we really don't know that much at this time, just that he is in Stage 4 & he has a "spot" on his liver. The doctor DID say that the colon surgery would be first, so I don't know what that means, if it's a good sign or not, but anyway, that's what's gonna happen first. One question I have that maybe you can answer....I keep seeing "colorectal", but Jason's tumor is no where near the rectum, it's in the upper right part of the colon. Is that still considered "colorectal?".....Just something I was wondering about. I will post on here what we find out Monday. PLEASE pray for Jason (Jason Roach, we're in Maryville, Tn.) Thank you again & I'm sure we'll chat more! =) Take care & God Bless, Kris

    I am thinking that your

    I am thinking that your husband has one operable met so surgery is an option before any chemo (that's a good thing I think).

    If you have colon cancer (whether in the colon or rectum) with a met to any other organ it is then considered colorectal; don't quote me, I am not an expert. lol

    I hope your appt goes well and your husband has a positive up beat doc, if he doesn't go get one that is.

    I will praying and thinking of both of you. GOD is good. Laughing

     

  • Kris
    I was diagnosed with stage IV rectal cancer 10 months ago. I had 1 liver lesion. I had surgery in June last year, rectal tumor, liver tumor, and gallbladder removed all in one 6 1/2 hour surgery. I did 6 months of chemo - Folfox, every other week. The chemo was tougher than the surgery. The reason they say colorectal cancer - they lump the colon and rectum in one. It's all colon - just a little lower in the rectum.
    I am your neighbor a little south of you in north GA, about 45 min south of Chattanooga. I know right now must be really stressful, I think I cried everyday for 2 months. It does get a little easier as you understand more and absorb it all. I am 7 months out from surgery and so far everything is good. I am NED and getting CT every 3 months. The last one was in Dec after I finished chemo and so far clear. Have they told you what your husbands CEA is? Good luck with dr appt and remember 1 step at a time.
    Sandy :)
    Stage IV
  • karguy
    karguy Member Posts: 1,020
    I'm sorry

    I'm sorry you have to be here,but at least you can get some answers.I was dx with a colorectal tumor in 2008,did chemo,had surgery,and got a colosomy,and I was fine untill 2011,and a tumor was found on my liver,golf ball sized.I did chemo again,this time with out radiation.I had surgery again,and now I am ok again.Be sure you trust your doctor,and don't pay any attention to the stats,everyone is different.There are some stage 4's that are still ok after as long as 19 years.Hang in there,and don't ever give up.Deppresion is also a part of cancer,don't let it get you down,just talk to someone.Good luck.

  • PhillieG
    PhillieG Member Posts: 4,866
    Sorry to Hear About Jason...

    There are many ways to approach this. What I would do first is to get a second opinion if possible and/or make sure he's going to the best cancer center he can. I'm a firm believer that what you do first makes all the difference in the world. You really want to have an oncologist who deals with this on a regular basis.

     

    Also, sometimes it's better to do treatment (often chemo) first, then do surgery. It really depends on each situation. I was diagnosed 9 years ago with Stage IV colon cancer. I had liver mets and lung mets. My first Onc wanted to do surgery first and didn't have a good prognosis for me. I got a second opinion and that Onc didn't feel that the colon was an issue. I had more disease in my liver at the time so that was more important. That's the route I took and I'm still here and doing well.

     

    I can't stress enough that no two cases are alike and everyone responds differently to treatments and procedures. But having a great medical team often makes a huge difference.

     

    I hope this helps...

    -phil
  • gizzyluv
    gizzyluv Member Posts: 143

    I am thinking that your

    I am thinking that your husband has one operable met so surgery is an option before any chemo (that's a good thing I think).

    If you have colon cancer (whether in the colon or rectum) with a met to any other organ it is then considered colorectal; don't quote me, I am not an expert. lol

    I hope your appt goes well and your husband has a positive up beat doc, if he doesn't go get one that is.

    I will praying and thinking of both of you. GOD is good. Laughing

     

    I think....

    From what we have been told so far he has a pretty large tumor in the upper right side of the colon. I spoke to the dr. today on the phone after the CT Scan & all he said was that there is 1 "spot" on his liver. He didn't use the term "mass" or "lesion".....just "spot", & considering the fact that he hadn't personally looked at the picture of the liver himself yet (he just got the results from the radiologist over the phone) I'm  hoping it's nothing real major. I mean, I know if the cancer has spread at ALL it's MAJOR, but you know what I mean.....One thing he did make clear though was that he will be doing the colon surgery first, before anything else, so I hope it's the right thing to be doing. The dr. is very highly regarded as being one of, if not THE best colorectal cancer surgeon in this area, so I just pray that the lord guides him to do what is best for Jason. Thank you for your concern Brenda, it really means a lot to me & is really helping me cope with all this. God Bless, Kris

  • gizzyluv
    gizzyluv Member Posts: 143

    Kris
    I was diagnosed with stage IV rectal cancer 10 months ago. I had 1 liver lesion. I had surgery in June last year, rectal tumor, liver tumor, and gallbladder removed all in one 6 1/2 hour surgery. I did 6 months of chemo - Folfox, every other week. The chemo was tougher than the surgery. The reason they say colorectal cancer - they lump the colon and rectum in one. It's all colon - just a little lower in the rectum.
    I am your neighbor a little south of you in north GA, about 45 min south of Chattanooga. I know right now must be really stressful, I think I cried everyday for 2 months. It does get a little easier as you understand more and absorb it all. I am 7 months out from surgery and so far everything is good. I am NED and getting CT every 3 months. The last one was in Dec after I finished chemo and so far clear. Have they told you what your husbands CEA is? Good luck with dr appt and remember 1 step at a time.
    Sandy :)
    Stage IV

    CEA?....Nope, I don't even

    CEA?....Nope, I don't even know what that is. That's how "new" I am to all this. Really all we know is that Jason has a large tumor in the upper right part of his colon & a spot on his liver. The dr. just got the results of his ct scan over the phone from the radiologist that read the ct scan, so he said he doesn't even know where the spot is on the liver. He said if it's on the outer part it may be possible to just cut that part out, or if it's deeper in (I guess?) he may need to do chemo &/or radiation. We'll know a lot more when we go see the dr. Monday. I am SO thankful to have found this site, it's stories like yours that I'm looking for, because I really to try & stay positive for Jason's sake & hearing stories like yours makes it so much easier, so thank you so much! I'll post what we find out Monday. Please keep Jason in your prayers....(Jason Roach & we're in Maryville, Tn.) Take care & God Bless, Kris

  • janderson1964
    janderson1964 Member Posts: 2,215
    I am sorry you have to be

    I am sorry you have to be here but welcome. your husband sounds very similar to me.I was 41 and having a lot of digestive issues. i finally insisted on a colonoscopy which revealed a large mass. follow CT scan revealed one spot in my liver which they cut out after the colon surgery. That was nearly 7 1/2 years ago. there are several folks on here who have been surviving stage IV  OVER 8 years.

  • mom_2_3
    mom_2_3 Member Posts: 952
    Kris

    Kris,

    I am sorry that you have to be here but I am glad that your husband was able to receive his diagnosis so that you can now work together towards resolving this issue.

    I also was diagnosed with colon cancer with mets to my liver.  At the time of my diagnosis I had 5 mets on my liver and they were on both sides, the largest was a bit over 5 cm.  I was able to have a colon/liver resection and completed 7 more months of chemo.  I am now 4 years in remission (NED) and I am on a 2x/year scan schedule.

    I would suggest that before Monday you purchase a notebook (preferably one with pockets) as you will be taking lots of notes during your doctor visit and will probably receive pamphlets about treatments.  Make sure you document what you and the doctor discuss.  Both my husband and I would take notes and it was interesting to see what we each captured and in some cases he would write things down I don't even remember hearing my doctor say.  Before your visit, prepare a list of questions for the doctor (assuming oncologist?).  If they are saying that a colon resection is imminent it is likely that the colon tumor is in danger of obstructing your husband's colon.  Depending upon the urgency of that surgery, however, it may be possible to consult with a surgeon regarding the liver met (if that is in fact what it is).  When you are speaking to anyone keep in mind their area of expertise.  Oncologists want to dispense chemo and surgeons want to operate.  An oncologist may not be able to give the final word on surgery.  My oncologist works with a tumor board comprised of the oncologist, colon surgeon, liver surgeon, lung surgeon, interventional ragiologist, etc.  They review each case she brings in to determine operability and treatment plan. 

    The board here is a fantastic resource and you will find everyone very compassionate and helpful.  I am glad that you have found your way here.  If you ever want to speak on the phone, please PM me and I can provide my number.  I wish you all the best and will be thinking of you on Monday.

    Amy

     

     

     

  • mom_2_3
    mom_2_3 Member Posts: 952
    Kris

    Duplicate.  Sorry!

  • maglets
    maglets Member Posts: 2,576

    I am sorry you have to be

    I am sorry you have to be here but welcome. your husband sounds very similar to me.I was 41 and having a lot of digestive issues. i finally insisted on a colonoscopy which revealed a large mass. follow CT scan revealed one spot in my liver which they cut out after the colon surgery. That was nearly 7 1/2 years ago. there are several folks on here who have been surviving stage IV  OVER 8 years.

    hello and welcome

    well some of the survivors are lining up here to welcome you. I was diagnosed in 2005 with colon and since then have had 2 bouts with liver mets....still going strong and NED (no evidence of disease) for going on 4 years....hope hope and more hope lives here.

    Phil is right....each doc will have a different approach....some like to do chemo to shrink things....some (mine) goes straight for surgery first and then after healing some chemo. Perhaps your doc will want to address the colon first and deal with the liver a little later.

    This forum is a wonderful source of knowlege, experience and support.  I hope you will stay in touch as you and your hubby begin this long journey....one single step at a time.

     

    much love, maggie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Hi Kris...sorry about your
    Hi Kris...sorry about your news. My husband was diagnosed stage 4 in august. Be ready for many ups and downs and check in here often for great advice, support and hope! Hang in there!
  • janderson1964
    janderson1964 Member Posts: 2,215
    maglets said:

    hello and welcome

    well some of the survivors are lining up here to welcome you. I was diagnosed in 2005 with colon and since then have had 2 bouts with liver mets....still going strong and NED (no evidence of disease) for going on 4 years....hope hope and more hope lives here.

    Phil is right....each doc will have a different approach....some like to do chemo to shrink things....some (mine) goes straight for surgery first and then after healing some chemo. Perhaps your doc will want to address the colon first and deal with the liver a little later.

    This forum is a wonderful source of knowlege, experience and support.  I hope you will stay in touch as you and your hubby begin this long journey....one single step at a time.

     

    much love, maggie

    my surgeon is like yours. He

    my surgeon is like yours. He likes to cut it out first. Then chemo. That has been the case all three times for me and I have to agree with him.

  • tachilders
    tachilders Member Posts: 313
    My advice is to make sure

    My advice is to make sure that the surgeon talks to an oncologist prior to the surgery, as they may want a biopsy of the liver spot to determine if it is cancer.  Also, if at all possible, get a second opinion from a surgeon and oncologist from a cancer center, and don't rely on the local hospital's surgeon and oncologist.  You want to make sure that everything is done right with this first surgery, as it can impact your husband's health and prognosis going forward.  I am 46 and have stage 4 with mets all over (liver, lung, peritoneal cavity, lymph nodes, etc...) and I had my initial surgery at the local hospital.  Unfortunately, I had a significant blockage of the lower colon (sigmoid junction), so I didn't have time (and didn't know enough) to get a second opinion prior to the surgery.  The plan was a laproscopic resection and reattachment of the colon, but apparently the local folks weren't very good at reading the CT scans, as once they got in there they were shocked to find the tumor was waaaaaay larger (and had mets everywhere) than expected and they couldn't remove any of it.  In retrospect, I wish I had gotten a second opinion from a more experienced surgeon at a cancer center, as maybe they could have done something different.  As it is, the put in a colostomy, and I am stuck with just chemo at this point to try and control my cancer.  However, I am looking into other options.  Your husband's case sounds much more promising than mine, and that spot on the liver may not even be cancer.  Even if it is, a single met should hopefully lead to a good prognosis for him.  As others have said, there are stage 4 folks on here that have been around 8 or more years, and are still going strong.  Ask as many questions as you need to, ad do NOT be afraid to get second or even third opinions if you are not comfrotable with the info you are getting.  Best of luck!!!

    Tedd 

  • wawaju04976
    wawaju04976 Member Posts: 316
    Don't look at the statistics.

    Don't look at the statistics. One thing I found out is that many CRCs are diagnosed after fifty. If one of those people has a heart attack, he can be lumped into the CRCs statistics. Write down questions/concerns THE notebook. I also write down treatments I see in forums like this. You are your own best advocate (or your husband's). This place has been a lifesaver for me. I sat in the hospital after the surgeon told me no more than a couple of years. I was devastated, of course. It wasn't until I talked to my oncologist that I started feeling better.

    Judy

  • wawaju04976
    wawaju04976 Member Posts: 316
    Don't look at the statistics.

    Don't look at the statistics. One thing I found out is that many CRCs are diagnosed after fifty. If one of those people has a heart attack, he can be lumped into the CRCs statistics. Write down questions/concerns THE notebook. I also write down treatments I see in forums like this. You are your own best advocate (or your husband's). This place has been a lifesaver for me. I sat in the hospital after the surgeon told me no more than a couple of years. I was devastated, of course. It wasn't until I talked to my oncologist that I started feeling better.

    Judy

  • gizzyluv
    gizzyluv Member Posts: 143

    I am sorry you have to be

    I am sorry you have to be here but welcome. your husband sounds very similar to me.I was 41 and having a lot of digestive issues. i finally insisted on a colonoscopy which revealed a large mass. follow CT scan revealed one spot in my liver which they cut out after the colon surgery. That was nearly 7 1/2 years ago. there are several folks on here who have been surviving stage IV  OVER 8 years.

    Oh wow!

    You have no idea how much better hearing this from you makes me feel! Or maybe you do know....Laughing All we know right now is the cancer is Stage 4 with 1 spot on his liver. The dr. is planning on doing the colon surgery first, then according to where the spot is on his liver he will decide the treatment for that at that time. This is all just SO much to take in! He had been having digestive issues for almost 2 years, but with no insurance (and STILL no insurance! Cry) we just couldn't afford for him to have the colonoscopy done, but we finally saved up enough money to have the colonoscopy done & I'm so glad we did.....it was almost too late. I don't know what we're gonna do about the hospital & doctor bills, but money is the last thing I'm worried about right now. My sister has started an online fundraiser, which I didn't even know existed, but we've been so blessed by people giving whatever they could afford. It all adds up. He lost his job in 2008 & has since just been doing odd jobs to bring money in, but even that has stopped within the last few months. He just hasn't felt like doing much of anything, & my job went from full time to barely part time, & now I'm not even working part time so it's gonna be a ROUGH road, but I'll be there by his side to ride it out! The lord always provides.....

     

    THANK YOU so much again for sharing your story! I will be sure to let Jason read it as well. I'm so glad I found this site, maybe this way I won't end up going completely insane. lol Take care & God Bless! Kris

  • gizzyluv
    gizzyluv Member Posts: 143
    mom_2_3 said:

    Kris

    Kris,

    I am sorry that you have to be here but I am glad that your husband was able to receive his diagnosis so that you can now work together towards resolving this issue.

    I also was diagnosed with colon cancer with mets to my liver.  At the time of my diagnosis I had 5 mets on my liver and they were on both sides, the largest was a bit over 5 cm.  I was able to have a colon/liver resection and completed 7 more months of chemo.  I am now 4 years in remission (NED) and I am on a 2x/year scan schedule.

    I would suggest that before Monday you purchase a notebook (preferably one with pockets) as you will be taking lots of notes during your doctor visit and will probably receive pamphlets about treatments.  Make sure you document what you and the doctor discuss.  Both my husband and I would take notes and it was interesting to see what we each captured and in some cases he would write things down I don't even remember hearing my doctor say.  Before your visit, prepare a list of questions for the doctor (assuming oncologist?).  If they are saying that a colon resection is imminent it is likely that the colon tumor is in danger of obstructing your husband's colon.  Depending upon the urgency of that surgery, however, it may be possible to consult with a surgeon regarding the liver met (if that is in fact what it is).  When you are speaking to anyone keep in mind their area of expertise.  Oncologists want to dispense chemo and surgeons want to operate.  An oncologist may not be able to give the final word on surgery.  My oncologist works with a tumor board comprised of the oncologist, colon surgeon, liver surgeon, lung surgeon, interventional ragiologist, etc.  They review each case she brings in to determine operability and treatment plan. 

    The board here is a fantastic resource and you will find everyone very compassionate and helpful.  I am glad that you have found your way here.  If you ever want to speak on the phone, please PM me and I can provide my number.  I wish you all the best and will be thinking of you on Monday.

    Amy

     

     

     

    Yes

    Hi Amy, thank you for sharing. Yes, Jason's tumor is almost to the stage that it will completly block his colon, that's why the surgery is so urgent. One thing I was thinking of, do you know if a CT Scan would have shown if he had any issues with his kidneys? The reason I ask is he complains a lot with pain in his back on both sides where the kidneys are. I did mention it to the dr. that performed the colonoscopy, but he didn't seem to think it was related to the cancer. He also gets pain up under his ribcage, sometimes it's not so bad & others its VERY bad.....is that common? The tumor is in the upper right part of his colon.

    I'm SO glad I found this site, I'm having so many questions answered & I'm reading so many inspirational stories that are keeping me somewhat sane. Laughing I will post an update as to how the dr. appt. goes Monday. Please keep Jason in your prayers (Jason Roach, we're in Maryville, Tn.) Take care & God Bless, Kris

  • gizzyluv
    gizzyluv Member Posts: 143
    jen2012 said:

    Hi Kris...sorry about your
    Hi Kris...sorry about your news. My husband was diagnosed stage 4 in august. Be ready for many ups and downs and check in here often for great advice, support and hope! Hang in there!

    Thanks!

    I sure will! Thank you for making me feel so welcome here! Kris