Really need some big time advice and guidance, anybody out there? Thank you!

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ppm20wife
ppm20wife Member Posts: 44
edited March 2014 in Colorectal Cancer #1
OK Had our first major consultation after we learned the other organs were clear. Not so good news or maybe another bump in the road - I don't know but please help with your personal views. DH has to be genetically tested for Lynch's Syndrome...Any experiences with this out there? Also his CEA markers are high.... ????? Lastly because he is about 60 pounds overweight they have to do the surgery regular old way no lasar surgery. Cancer is in the right side of the colon and about the size of a big plum...any thoughts on this??? He is now being sent to Pluta cancer center here in Rochester, New York...is this a good place? Looks like 45 percent of his colon is going to be removed. If the genetic test comes back positive they want to remove the entire colon except for about an inch so they can attach it to the small intestine...what does that mean for him? Also they are concerned about the lymph nodes...why? we go back again for more details next week - they said alot to us but it seems like a blur...please can anybody straighten me out - I feel like a mess and I don't know what to do now!

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  • Julie 44
    Julie 44 Member Posts: 476 Member
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    Take a big breath
    Take a big breath and calm down for a minuet.....Before you do anything I would suggest that you go for a second opinion...Maybe Sloan Kittery in NYC..I know you live several hours away but seeing that your diagnois is very extreme I would get a second opinion to make sure that other doctors agree....If for nothing else but a peace of mind....I went there and they are very very good...
    As far as the lymph nodes that is to see if the cancer attached themselfs to them and got through the colon wall and then sometimes they break off and could travel around your body...So they need to see how many are involved.....
    Don't know anything about Lynch's Syndrome but you can look it up on this web site..But be aware that there is alot of incorrect information out there so don't believe everything you read...
    Make sure you write down whatever questions you have for your doctor.Cause your world has just turned upside down so you will forget some.
    Keep comiing to this web site and ask any questions because we have all been there and know how scarey it is....
    Good luck and know that you and your family are in my prayers.......JULIE
  • ppm20wife
    ppm20wife Member Posts: 44
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    Julie 44 said:

    Take a big breath
    Take a big breath and calm down for a minuet.....Before you do anything I would suggest that you go for a second opinion...Maybe Sloan Kittery in NYC..I know you live several hours away but seeing that your diagnois is very extreme I would get a second opinion to make sure that other doctors agree....If for nothing else but a peace of mind....I went there and they are very very good...
    As far as the lymph nodes that is to see if the cancer attached themselfs to them and got through the colon wall and then sometimes they break off and could travel around your body...So they need to see how many are involved.....
    Don't know anything about Lynch's Syndrome but you can look it up on this web site..But be aware that there is alot of incorrect information out there so don't believe everything you read...
    Make sure you write down whatever questions you have for your doctor.Cause your world has just turned upside down so you will forget some.
    Keep comiing to this web site and ask any questions because we have all been there and know how scarey it is....
    Good luck and know that you and your family are in my prayers.......JULIE

    Hi and thank you Julie - the
    Hi and thank you Julie - the Pluta Cancer Center will be our 2nd opinion appointment - they have all his records now and will see us after his CEA marker blood test comes back (appt on Monday) - btw what will that tell us? As I said, our original dr. explained it all and I took notes but for some reason it is not sinking in yet :(
  • shmurciakova
    shmurciakova Member Posts: 906 Member
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    ppm20wife said:

    Hi and thank you Julie - the
    Hi and thank you Julie - the Pluta Cancer Center will be our 2nd opinion appointment - they have all his records now and will see us after his CEA marker blood test comes back (appt on Monday) - btw what will that tell us? As I said, our original dr. explained it all and I took notes but for some reason it is not sinking in yet :(

    Hi!
    Hi,
    First of all it is good news that they did not see cancer in any other organs. I had regular surgery (as opposed to laproscopic) and it had nothing to do with my weight. Some doctors feel this is preferable anyway. It doesn't look as pretty and the recover is a bit longer, but is not a huge deal. It is actually not bad. He will probably be in the hospital for about 7 days. They always test the lymph nodes to see if the cancer is Stage II or III. As for the CEA, it is a test that shows how much of a certain protein (carcino embryonic antigen) is being excreted by his tumor. Once the tumor is out the CEA will go down. Afterwards they test the CEA periodically. If it rises over a period of several months that can indicate that something new is going on...
    As for Lynch Sndrome and the hospital you are going to I have no idea. I do know though that Lynch or any genetic abnormality for that matter, is quite rare. So unless there were some large # of polyps or a strong history of colon cancer in his family I would not worry too much about that.
    Good luck and let us know what happens,
    Susan H.
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
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    ppm20wife said:

    Hi and thank you Julie - the
    Hi and thank you Julie - the Pluta Cancer Center will be our 2nd opinion appointment - they have all his records now and will see us after his CEA marker blood test comes back (appt on Monday) - btw what will that tell us? As I said, our original dr. explained it all and I took notes but for some reason it is not sinking in yet :(

    Stay calm down.Although
    Stay calm down.Although doctors try to give a diagnosis about which stage the cancer is at,but they will not know exactly after they do the surgery.Only the pathology test will tell you exactly if any lymth nodes are involved,if there is any,that means cancer is at stage 3,if not,that means still either at stage 1 or stage 2.If the cancer has spead to any organ of the body,that means stage 4.You can go to this link to check out Colorectal Cancer Staging
    http://www.oncologychannel.com/coloncancer/staging.shtml#stagegrouping.I suggest you when you go to cancer center with your husband,you should ask if they have library or social worker servive where they can give you free cancer books or booklets,this way you can learn a lot from books.Actually after all these years' research,colon cancer treatment is pretty straightforward now.I assume your husband's diagnosis is at stage 2,usally they will do chemo and radiation first for six weeks,then surgery, after surgery if it is needed,then more chemo.Anyway,they have standard and routine treatment for colon cancer.If they do more test,I am guessing they want to choose the right medication for him.Just stay calm down,do your own research,either google,or post message on this board.The more you know about cancer,the better you handle it.Good luck.
  • pf78248
    pf78248 Member Posts: 209
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    Good source of information
    I know just how upset, frustrated and afraid you are. I was in your shoes not long ago. I am also a caregiver for my husband who was diagnosed in April of 2008 with stage III colon cancer (now stage IV). I don't post too often, but this site has been a wealth of support and information for us. One thing I recommend is purchasing the American Cancer Society's Complete Guide to Colorectal Cancer. You can order it direct from the ACS or through Amazon. It answers so many questions and will give you many ideas for questions for the doctors, surgeons, etc. I also ordered a book from the ACS on caring for a cancer patient, and it's pretty good, too. But the Guide has been invaluable.

    Just remmember, you can get through all of this. You need to take good notes at every appointment and you will probably need a good filing system, too, to keep up with doctor contacts, appointments, medications, and those all important insurance papers and bills. It's a big task, but as a caregiver the best thing you can do is give your husband a positive attitude about your future together and take care of all those little things he may not feel up to doing for awhile. Love him and enjoy every minute of every day together. And educate yourself!

    Good luck and let us know how we can help.

    Hugs and Prayers,
    Priscilla
  • kimby
    kimby Member Posts: 797
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    Lynch Syndrome
    Testing for Lynch Syndrome (HNPCC) is a blood test. A geneticist will interview your husband, take a family and personal history and establish 'likelihood' prior to taking a blood sample. If Lynch is likely there are some real benefits to knowing for sure, from my perspective. I have children. If a gene can be identified that is mismatched, they can be tested for that. Each child has a 50/50 chance of the same mutation. Because they have not yet been able to identify my mutation, my sons all need to have annual colonoscopies starting now. So, they have all recently had their first colonoscopies at 23, 21 and 17. If they were able to be tested and didn't have the mutation they could each wait for that testing until they were 33 - 10 years younger than I was at diagnosis. I'm having extensive genetic testing done still. It's been a year. Although Lynch is associated with other canzers (endometrial, stomach, etc) it doesn't usually metastasize. Second primaries are much more treatable and curable than mets are.

    If he needs a total colectomy it's to avoid recurrence in the colon, which is common with HNPCC. The large intestine removes liquid from the stool. It will impact his 'function' in that area and he'll need to get used to a new normal but it won't impact him as much nutritionally. Most of that takes place in the small intestine.

    The size of his tumor isn't good news or bad news. It should have little impact on his prognosis. Lynch is usually found on the right side (ascending).

    When you go back, take a small tape recorder and a list of questions. They will give you so much info that you won't be able to keep up or remember everything. You'll want the info later. I also get a copy of all test results in writing: blood labs, scans, surgical reports, etc. I have several large binders with everything organized - one is for billing/insurance info. ick.

    I hope this answers some of your questions. Please keep us up to date.

    Kimby
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Wow! What a knowlegable bunch!!!
    I don't have much to add...except my good vibes!

    Please keep us posted...

    Hugs, Kathi