I need some advice on what to do next...

Bigkahuna · October 2003

Hello my name is TJ. My wife has colorectal cancer. The doctor told us yesterday that she maybe has a year left. My wife and I don't beleive that that is it. We think that there has to be other options. I don't know what to do. A year ago she was having pains in her stomach, to make a long story short she had surgery to have a complete histarectomy and at that time they thought it was ovarian cancer....but it turned out to be colorectal cancer. She went through chemo and radiation and after a couple of months she was doing great...then they said she should get a PET test to see if the cancer was anywhere else in her body. After the test it came back negative everywhere else in the body except a faint trace in her rectum where her tumor is now. things looked good her tumor had shrunk to the point that they couldn't measure it and there wasn't a lump anymore. She was scheduled to have her chemo/blood port out yesterday but the oncologist decided to do a examine and he said he could still feel it and that they should do a test to look up there and take pictures to be on the safe side. The next thing we knew he was telling us that the tumor was still there...and bigger and that if she did't have a operation to have a colostomy bag put in then she would soon be blocked off. Well, to say the least I was devastated by the news...we have a four year old daughter and I just can't think of raising her without my wife. How do you tell a four year old who loves her mother that she only has a year left to spend with her?? I don't know what to do...any advice/help/info on what we could do next would be greatly appreciated...we have an appointment next week at the Lahey clinic..and have thought that if we didn't get anywhere there we would go to the Dana Farber cancer Institute. But what I really want to know is....does anyone ever survive this? I won't give up...ever...I just want to know can we beat this thing?? Well, any help would be great. Thanks alot.

StacyGleaso · October 2003

Hello TJ,

There is hope. How ridiculous for doctors to put an expiration date on your wife. Start by throwing that right out the window.
I don't understand how they can do that knowing that it is in the rectum, and hasn't gone to the liver or any other organs. Perhaps they are just incompetent and aren't up to the challenge.

Regardless, keep the hope. My kids (ages 2, 4, & 7) at the time of my diagnosis were TOTALLY my motivation to get through this. I am their mom, and my work here wasn't done! That was two years ago. As of my testing done Monday this week, I am officially all clear. Mine even spread to my liver and a few lymph nodes.

A colostomy is not the end of the world. Granted, not how everyone planned things, but not grounds for throwing in the towel.

Wait until your appointment next week and see what transpires there. Have her e-mail me through this web site to give her any encouragement that I can. And stay strong for her, it will only help.

Keep me posted,
Stacy

Unknown · October 2003

Hi T.J.

I'm glad Stacy already got in touch with you because I was going to tell you all about her. She and a host of other's have been my link to sanity through much of this whole, ongoing, roller coaster ride. There are a bunch of Stage IV's on this board who are very much alive and kicking today and I think, in part, because they didn't take their first diagnosis as God's word, but only those of a mere mortal.

My own husband, Bert, was diagnosed Stage III back in July. Right colon cancer, bowl wall penetration, lymph node involvement, but fortunately, no metasteses to other organs, which our oncologist thought was terrific, great survival chances, and gave "two thumbs up." I, however, as his caregiver, was much more down than he was and not optimistic at all, since Bert's father did die of this terrible disease in his mid-fifties.

When I came to this board, I was so full of the doom and gloom of other colon cancer boards, that I just knew my husband wasn't going to make it. This board....especially that stage IV's, changed all that. It's still ultimately in God's hands however, I now have so much hope and faith and also comfort in knowing that I am not alone and there are other things that we can do besides take the doctors comments as law and written in stone.

You hang in there...be as supportive as you can, and as I have been told so many times, allow time to take care of yourself because, my friend, your wife is going to need you. And if you can't take care of yourself, how can you take care of her. It's really important....two can fight it so much better than one. My prayers are with you. Chin up!!!! I'm going through a little set-back myself right now, but that's all it is...just a little set-back on this uphill climb. We will reach summit, as will you.

Monika

2bhealed · October 2003

Hello kahuna,

I am a two year survivor of Stage III lymph pos colon cancer and doggone it no one can determine your wife's date of departure. Thankfully my oncologist never got into that game or I would have found a new one. But now he is dealing with colon cancer himself so he is quite compassionate and supportive.

There is a website you can visit started by a man who healed his colon cancer through diet. www.hacres.com

www.curezone.com is also a good reference for alternative approaches.

Beating Cancer With Nutrition by Patrick Quillin is a wonderful reference for anyone dealing with cancer no matter what treatment you are receiving.

My little one was 20 months old when I was diagnosed (5th child) and there was no way I was leaving her or any of them without a fight!

So you don't have to tell your little girl that her mama is temporary. We are all just visiting here so why get her upset?

Tell your wife to come hang with the rest of us semi-colons.

peace, emily

Karlen1 · October 2003

Hi TJ, there is always hope, so hang in there. Do the docs say they will remove the tumour when they do the operation to make a colostomy? I had stage 3 rectal cancer and had surgery to remove the tumour and they gave me an ileostomy at that time, then chemo, then combination chemo/radiation. One lymph node showed a trace of cancer. So far, all my check-ups have been fine. I can have my ileostomy reversed but have chosen not to as I'm not having problems with it, so if it ain't broke, don't fix it. But should your wife have a colostomy or ileostomy, there are some things you should know beforehand to help prevent problems with the ostomy. Most important, I think, is making sure the surgeon gives your wife a good spout (the part of the stoma that sticks out from your skin surface). The spout should be 1 to 1 and a half inches long, and that measurement is AFTER the swelling goes down. There are other measure that can be taken to help prevent problems and you must know them before the surgery. Feel free to e-mail me at circus@nb.sympatico.ca Keep a positive attitude, there are lots of stage 4 cancer patients who have beat the odds, so stay strong and fight. The UOA ostomy site has terrific infomation.

All the best, Karlen

Karlen1 · October 2003

Hi again TJ, here is the link to that site.http://www.uoa.org/discussion/genboard0310/

Take care, Karlen

WLawrence · October 2003

Hi TJ. Where did you get the idea that your wife has only a year to live? There is nobody knows how long we have. I am 70 with stage4 rectal cancer with mets to the liver and I plan to be around for a long time. From your posting I guess you live in MA as do I.I have been on this journey for a year. I have had surgery, chemo and radiation. The Onc thought I was NED until I had a Pet scan. Up to this time all my treatments have been withh the local cancer center. The local center is connected to the Partners Group in Boston. Some of the doctors there were students of my Onc. Great set up. I have been going to Mass General for reviews. In fact I am going in next week for more scans to see what needs to be done to the liver mets. If you wish you may mail me my address is in my Profile. Also it may be possible for us to meet and chat over a coffee. I live in Westford. Could be we are neighbors. Stay positive. It sure helps. Walter

sharynann · November 2003

I read your post and I have to tell you that it just breaks my heart to hear all of the people that this disease has touched. First of all, My father in law has been diagnosed with stage 4 inoperable colorectal cancer. It has spread throughout his liver and his stomach. He has now gotten through his first chemo treatment and will start his next one tommorrow. We have done so much research on everything that would be helpful to him. We want to help build his immune system so that he has more of a chance of fighting this disease. I have discovered that there has been much research on nutrition and how cancer loves sugar. The higher your diet is in sugar the more your cancer will grow. If you cut out sugar, you may starve the cancer. There is so much more to this than I can say here but I highly recommend that you research the cancer sugar connection. And I don't mean just cutting out sugar, I also mean cutting out the things that turn to sugar. I have a friend who is fighting stage 4 lung cancer with metastatsis to the liver, stomach and brain. She has been following a no sugar or high glycemic foods diet. That means cutting out pasta, white potatoes, all processed foods. Although it is still too early to tell if this will help her, they are already seeing a response in her blood work. I'm not suggesting to not do the chemo route, I'm only suggesting that it makes sense to follow good nutrition along with it. I highly recommend Dr. Patrick Quillins (not sure of spelling) book "Beating Cancer With Nutrition". It comes with a CD so that if you don't have time to read the book entirely, it is summarized on the CD. My sister in law gave me the CD to listen to and it is awesome! There are so many survivor stories that he tells you about. Don't give up! Your wife can beat this! Stay positive for her and your child. I know that you must feel helpless (we all did) but take an active role in researching as much as you can. Keep checking back here. These people here have given me so much hope for my Father in Law.
Sharyn

jdominique · November 2003

Sorry to hear about your wife's problem.I believe it's an excellent idea to to Lahey clinic and to Farber's.It's good to get 2nd opinion.Yes people in worse condition survive.Be positive.Pray.There's hopr .especially the fact that youe wife is young.Good luck and God bless.

debs3 · January 2004

2bhealed said:
Hello kahuna,

I am a two year survivor of Stage III lymph pos colon cancer and doggone it no one can determine your wife's date of departure. Thankfully my oncologist never got into that game or I would have found a new one. But now he is dealing with colon cancer himself so he is quite compassionate and supportive.

There is a website you can visit started by a man who healed his colon cancer through diet. www.hacres.com

www.curezone.com is also a good reference for alternative approaches.

Beating Cancer With Nutrition by Patrick Quillin is a wonderful reference for anyone dealing with cancer no matter what treatment you are receiving.

My little one was 20 months old when I was diagnosed (5th child) and there was no way I was leaving her or any of them without a fight!

So you don't have to tell your little girl that her mama is temporary. We are all just visiting here so why get her upset?

Tell your wife to come hang with the rest of us semi-colons.

peace, emily

i had bowl cancer 3 yrs ago now ...thank god . i also like you was told when my youngest daughter was only 18 months at the end of the day i only live for my 5 kids .im ok now and im going to get to see my grandchildren if ive got any say in the matter. hang in there.xxxxxDEB

I need some advice on what to do next...

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