28yr old with stage IV colon cancer

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28yr old with stage IV colon cancer

by LisaKG on Mon Nov 26, 2012 11:56 AM

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I am 28 years old and have been diagnosed with stage IV colon cancer with had spread to my ovaries, bladder and liver. I had surgery almost two weeks ago. my surgeons were happy with the outcome of the op because they were able to remove all the cancer except in my liver. They removed the primary cancer which was only in a small portion of my bowel, they also removed my right ovary and half my left ovary. They cut out what cancer was on my bladder to. My surgeon wanted to give me full hysterectomy (to be safe) but then took into consideration my age, as well as I have had no children. I see the med oncologist this week and hopefully discuss when chemotherapy will start. By the sounds of things I have a long road to recovery :/ I am just really curious to know that if chemo is a success in shrinking the cancer in my liver to make it possible to have further surgery to remove it, does that better my chances of survival or to be cured?? Cause having that surgery would mean they've cut all the cancer out. I know hearing other stories of people surviving over 5 years, which is fantastic! But given my age I really wanna know there's hope that I can see through the next 30 or more years.

RE: 28yr old with stage IV colon cancer

by Cb1975 on Wed Nov 28, 2012 02:58 AM

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I am 36 years old and diagnosed with stage iv cc with met to liver in April of this year. I had surgery to remove the primary colon tumor and liver met. If you qualify, you should have your liver mets surgically removed. This I the best chance you have at cure and long term survival. It will definatly better your chances. There is. O guarantee that chemo alone will take care of theses mets. Chemo works best on microscopic cancer cells that cannot be seen. All the best

RE: 28yr old with stage IV colon cancer

by AnneLilja on Wed Nov 28, 2012 11:24 AM

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Hi LisaKG, I'm so sorry you have to deal with this potentially deadly illness at such a young age. I'm glad they've been able to get the primary tumor and mets to your ovaries and bladder out. Chemo can definitely shrink the liver mets so that they can be surgically removed, but it depends on your response to chemo and on the number and placement of your mets. Keep in mind that all survival statistics are old figures, things happen all the time with new procedures. Hang in there! Wishing you the very best. Sincerely, Anne

RE: 28yr old with stage IV colon cancer

by MadeInMichigan on Mon Dec 10, 2012 05:52 AM

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This sounds a decent bit like the situation my mom is in, though she had cancer of the appendix (not quite the same thing). She got surgery, chemo to shrink a spot on her liver, and more surgery. Her cancer numbers are still up despite having no visible tumors in her body, though she's still breathing. She'll be going back on chemo next month and she's understandably not happy about that, but we'll see what happens.

RE: 28yr old with stage IV colon cancer

by RosieGrace on Mon Dec 17, 2012 10:02 PM

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It was sad to read your story because I'm young too. I'm 29. I have stage 4 colon cancer that's metastised to my lungs and my abdomen. I was diagnosed mid november and they tried to operate but the tumour was too large, so now it's chemo toshrink it and hopefully another operation in six months. I start chemo for the first time tomorrow and I am scared. I also have the same wonder about if the chemo will work in shrinking the cancer. if it doesn't, I'm screwed. Best of luck. I'm also hoping for another 20-30 years!

RE: 28yr old with stage IV colon cancer

by Whippleschmiple on Mon Dec 17, 2012 11:40 PM

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Have all of you younger patients had genetic testing for lynch (HNPCC), FAP, BRAC....  Try to also dramatically change diet, I read Dr. Servan-schreiber's Anti-cancer diet and since I had intestinal ampullary cancer which is like duodenal which is part of small intestine so similar to colon ca I followed all I could read on it.  My dad had had colon cancer.  I gave up red meat, almost all dairy,...  I add certain foods, limit others, drink a lot of green tea, ...  I was on xeloda and 5FU but for more advanced I am guessing oxaliplatin, maybe folfox or folfirinox of those with other drugs.  I read exercising a certain amount of METs (type of exercise units) reduced recurrence rates for colon cancer so it may help to improve immunity.  Some success for those with small areas in liver and immunotherapy at my hospital, Norris Cotton in Lebanon, NH (part of Dartmouth) under a Dr. Barth.  BEST TO ALL and enjoy the holidays!!  Find a support group, I have read survivorship odds increase!  J in NH

RE: 28yr old with stage IV colon cancer

by LisaKG on Tue Dec 18, 2012 03:50 AM

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Thank you everyone for your comments and kind wishes.

RosieGrace - I am sorry to hear about your illness too :( don't give up hope... my friends mother has breast cancer and she has been having chemo the last few months to shrink the tumor so they can operate and its worked! she is scheduled for operation start of feb. I am now around 6 weeks post op and recovered really well. I actually went back to work 3 weeks after my op :) (restricted activities though). I started my chemo yesterday. My oncologist has put me on Xeloda (capecitabine) to begin with. I am greatful it is in tablet form and not IV. Although, I think his decision to put me onto this treatment was purely for the fact it was Xmas time and instead of me spending it in and out of hospital, this seemed like an easier option. I haven't had any side effects yet (touch wood), although I did here it can take days/weeks to kick in.  I go back to my oncologist 3rd Jan after my 3 week cycle. He spoke about maybe adding Avastin to my treatment then further down the track adding 5FU. All my doctors said that given my age my oncologist will attack aggressively with my chemo but in fact he has done the opposite. He has said why do that if the lighter treatments work. I will discuss with him when I go back in a few weeks, cause I honestly want the strongest that gives it less chance of it coming back in future (providing they can even shrink the cancer in my liver). I know its scary but you just have to stay strong and positive. I now have overcome the fear of where my future lies. Im determined to beat this and thats the mind frame you need to put yourself into as well. I admit I still have my moments where I get down about it all though but I have so much support around me that gets me  through it :) I wish you all the best when you start chemo tomorrow. Hopefully it won't knock you about too much. Keep me posted!! :)

Whippleschmiple - As far as I know they were going to test my tumor to see if it was genetic but I haven't heard anything about that. I only discovered after I was diagnosed that bowel cancer runs on my dads side of the family. I will search for Dr Servan-schreiber about this diet. I have heard that 80% of the recovery is through your diet and that exercise plays a big part of it as well. I have been doing a fair bit of research into 'cancer causing' foods..its amazing what I have read so far! I will be limiting myself to certains foods, but at the same time I need a balanced diet. I have heard of the folfox treatment. I read some american doctors forum about how he thinks the folfox is the best treatment by far in showing the best results. All the best!!

Sending best wishes to everyone that is battling this terrible illness. Merry Xmas all!! :)

RE: 28yr old with stage IV colon cancer

by AnneLilja on Tue Dec 18, 2012 09:51 AM

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Lisa, I'm happy to hear you feel strong and positive. It's important. As for your treatment, I believe standard treatment would be Folfox or Folfiri plus Avastin, I'm not sure why you are on Xeloda alone (which turns into 5-FU inside the body btw). Folfox is a 5-FU (fluorouracil) and oxiliplatin cocktail, Folfiri is 5-FU and Irinotecan. These are both IV drugs, as is Avastin. Avastin inhibits new blood vessels from forming thus starving the cancer, and has been proven to prolong life. I think you should ask your oncologist why you are not on a more aggressive regime -- maybe he will change this after the holidays -- or get a second opinion. If you start IV-treatments you should get a port inserted first (port-a-cath). It's like a small box under your skin with a catheter into a large vein in your chest. A little miracle that saves your smaller veins and makes things a whole lot easier. A vascular surgeon puts it in, you are given sedatives and pain killers, but not put to sleep. It can be used for a long time and can be removed if/when you no longer need it. I wish you the best of luck and a merry Christmas despite all this cancer crap! Sincerely, Anne

RE: 28yr old with stage IV colon cancer

by LisaKG on Wed Dec 19, 2012 02:44 AM

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Hi Anne,

Thank you for the useful information :)

My oncologist did briefly mention that the reason he mainly put me on Xeloda was because of the holidays. But I will be discussing with him about the folfox treatment when I see him in 2 weeks. His plan was to try control the cancer first before attacking to try shrink the cancer (Im not sure if that is a standard procedure though).

I was informed about my options and one of them was the port-a-cath that stays insterted in the chest area. I think it is a good idea especially if I am constantly in and out of hospital having treatment.

Thanks again.. and I hope you have a lovely christmas :)

Lisa

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