I'm new to the site. I'm a nurse, but don't work in the nursing field and haven't for years. My boyfriend was recently diagnosed with Colon cancer. I'm wondering if anyone has some good advice on resources for information. Obviously the Internet is a great resource but it's also huge!
Jul 4, '09
I hope that helps...
Jul 4, '09
The first two links are resources I use personally. I am aware they are Canadian, but the information is universal for the most part. The last one is an American link that I found via Google search and looks reputable to me. Hope this helps. Good luck
1) Cancer Care Ontario @ www.cancercare.on.ca
2) Canadian Cancer Society @ www.cancer.ca
3) National Cancer Institute @ www.cancer.gov
Jul 5, '09
is a good resource and the message board posters are on top of the newest advances. My spouse was diagnosed in March 2007 and sometimes my fellow posters there have been a blessing. Prayers going your way.
Jul 5, '09
Thank you!! Your prayers are so appreciated! I still feel like this must be a bad dream.. he's only 43. I've only had 5 years with him, I can't even consider not having him.
Jul 5, '09
tracy, i was diagnosed with colon cancer 2 years ago--a stage 2/3 very aggressive one. since, i've had surgery and chemotherapy and everything seems under control although i am closely followed by an oncologist. colon cancer is the 2nd or 3rd most common cancer in the u.s. (depending on which reports you look at). the best place to get information is on the national cancer institute website: http://www.cancer.gov/
. go specifically to colon cancer and you will find an online booklet there called "what you need to know about cancer of the colon and rectum" (http://www.cancer.gov/cancertopics/w...lon-and-rectal
). the site also has all kinds of information about the chemotherapy drugs that are used and you can find information about drug trials. when i was going through my 6 months of chemotherapy i found there were a number of allnurses members who had also been through this for colon cancer and were very supportive, particularly regarding the side effects of the chemotherapy. they will contact you if they feel like they want to do that.
Jul 5, '09
We go to Cleveland on Monday, surgery is Wednesday. He has a 4.5 cm mass in the ascending colon, chest x-ray is clear. CT showed a 1.2 cm lesion undefined on right lobe of liver, all other organs clear. 2 lymph nodes near tumor are suspicious. We won't know the stage till after surgery. I'm thinking stage 2 or 3. Moderately differentiated adenocarcinoma came back from the biopsy taken during colonoscopy. His RBC's, HGB and HCT are down, but just below normal values. CEA is 1.7. I'm learning a lot about colon cancer, I feel like I should have paid more attention to his symptoms, he had every one of the main ones and I didn't see it. I'm a nurse and I didn't see it. I need all the support I can get... most days I'm so overwhelmed and scared. I can't let him see me like that. Thank You!
Jul 6, '09
I'll be praying for you. Keep your spirits up. My spouse had colon mass and multiple mets on his liver; compounded by the fact that he had malformed liver with one lobe. I'm telling you this because he had surgery for the mass and Radio Frequency Ablation on the liver. And now has chemo every other week and apart from fatigue, he's doing well. So....remember it's not a death sentence.......there are lots of treatment options.
Jul 8, '09
My CA was an undifferentiated adenocarcinoma and very aggressive, I was told. It was already in one lymph node. Surgery + chemo was ordered. The chemo is what finished it off. Colon cancer these days is considered a chronic condition. I received 5-FU, leucovorin and oxaliplatin. It was the oxaliplatin that caused all the side effects that I was left with. This is one of the 2 commonly used chemo treatments for colon CA and more and more I have heard that the oxaliplatin is really being the drug praised for curing the disease although it has some serious side effects. These days my CEA is currently running at 10; my CA 19-9 which is of more concern has elevated recently to 114. I have been PET scanned and no tumors have been found. You just stay on top of this after treatment. I see my oncologist monthly, have CEA and CA19-9 levels drawn every month and PET body scans done every 4 months. Anything suspicious is pounced on immediately and checked out. I can find my way blindfolded to the medical records department at the hospital where I have all my labwork and all these scans done because I go and get copies of all the them for my own records and to give copies of them to all my different doctors so they have them.
When I was getting my chemo there was a lady there that I struck a friendship with who came in every Thursday for the same chemo "cocktail" I was getting for colon cancer except hers had metastasized to her liver and her treatment was to keep it under control. She told me she had a number of tumors in the liver but that the weekly chemo had shrunk the tumors down considerably which is why she came in for the weekly dose of chemo. We commiserated about the side effects of the oxaliplatin all the time. My fingers were numb and she could not feel the bottom of her feet. I eventually got that side effect too. It has never gone away, but I am grateful that I am alive. I look at the positive side. . .I got handicapped parking out of all of this! My sister: "Bring your handicapped placard with us so I can get a parking space up close." You have to forgive her. She's not a nurse and she's not quite right. I've been making an afghan for her and one of her comments was, "I can probably get $100 for this." I wanted to stop working on it or give it to someone that would appreciate the work I was putting into it because she obvious didn't. And, she asked me to make it for her because she can't crochet!
Jul 9, '09
We go monday before surgery to MRI the lesion on his liver. I keep praying that it's just the one small lesion and no others will be found. Being a nurse has become a bad thing lately.... I understand what too many of these words mean. I have all the reports, I keep a big binder with his picture on the cover, all of my research and information to date is in there. I've read about the chemo cocktail, I'm so glad to hear from someone who has had it and it's working. All the statistics in the world really just scare you to death and don't end up meaning a whole lot when you consider the fact that we are people, we have names, we are not numbers! Thank you for your support, It's been wonderful to be able to talk to people on here. I can't even begin to tell you how much it's meant to me!!!
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