Colorectal Cancer Community

I am where you were 6 months ago. My husband, also 49 is dianosed but we don't know what. CT scan this week, surgery next week. I am trying to stay postive but I bounce between optimism and fear. I am so scared. We have been married for 27 years, we have a 21 year old and a 13 year old. We have always been very active. He had a good check up before we went for a 2 week vacation. Thank heavens it was worry free, the doctor thought he had a high-up hemeroid and sent him to a specialist to see if it could be removed. What a shock. We have so much family and friends support but it is hard for me to voice my fears when I have to be strong, brave and supportive for him and the children. We have told our 21 year old but we have only told our 13 year old that he is having surgery to remove a growth. At this point, we don't even know the stage. Only that it is in the uppper part of the rectum and he will be in the hospital for 7-10 days then recovering at home for up to 8 weeks and he will have a bag and all the other scarey stuff the surgeon has to gell us. I hope I am strong enough. I am also going to pray for you and everyone here as so many are doing for us. Could you please let me know how it turned out for you and if he has surgery and what I might expect.

I was 55 at my discovery. 2 weeks later surgery. 12"of rectum and colon removed. No bag though. Stapled anastamosis instead. 23 lymph nodes all clean. No chemo. I was 7 days in hospital and 6 weeks at home. Scar from top of belly button all the way down. Normal bowel movements have not returned. I use imodium when I work to prevent really frequent
"urges". The nerves that are down at the bottom where way up in the colon and any "sensation" is now urgent. Doing cat/mri quarterly. Quarterly blood work checking liver and CEA and the whole works. Have had one annual colonoscopy and had 10mm polyp that had cancerous possilblities, removed. No one gave me eating restricitions and I just "excercise" with a 30-40 min. walk 3-4 times a week. Work is 8 hours on my feet doing TSA screening at MSP airport - lots of excercise.
That is my experience hope your hubby is as lucky.
G'luck

Well the surgery was really rough on him. He has a temporary illiostomy. He had vomiting in the hospital and then the illio bag was filling fast. He had dehydration and then a kidney infection no doubt caused by the cathader. Turns out it was stage 3 and 1 lymph node (of the 16 they removed). He is on antibiotic treatment for the infection for the next 2 weeks so we are holding off the meeting with the oncologist about the thereapy. The surgeon believes he has it all and I believe that too but because there is one lymph node involved and perhaps a rouge cell he will need Chemo, they will also want to do radiation but from what I have read there is a lot of collateral damage to consider with radiation in that area they blanket. We should be half way through the recovery now but with the setbacks I feel like we are just starting the recovery in week 4.

I, too was diagnosed with stage 3 colorectal cancer in 2007. I had an operation, a temporary, 10 month illeostomy bag. They did more chemo for 6 months and yes, it was brutal, however, if ONLY 1 microscopic cancer cell is loose in the body , it will find somewhere to land and the whole process starts over again. Yes, the radiation did leave scarring but not so bad that it disabled me.The whole process with the radiation, bag and chemo is not easy on the body, however 4 years later I can say that I am cancer free and my oncologist does not think that it will return. I look at it as the treatments gave me better odds of beating this disease. The thinning of the hair, mouth sores, weakness, constant nausea and the throwing up, to me were all worth it and as bad as it was, I would do it all again in a heartbeat. I went through all this for 2 years. I got my intestines re-attached and the only real change was that now, when I have to go to the bathroom I can't wait too long. I have been able to control it more and more as time goes on . It probably doesn't seem like it now but things do get better. One of the best tools to fight this with is a positive attitude. It can make a world of difference. My prayers go out to both of you. Keep fighting the good fight.

Thank you. I am glad that worked out for you. 2 years is a long road to recovery. We did meet with the radiation and chemo oncologist. He is staged on the scale as T2 1N (technically 2 but with one lymph node (of 16) makes it sgage 3). My husband is very insistant on no readiation because of the potential collateral damage in the area and a huge maybe on chemo. I have been counter-acting this by tons of tumeric, dandelion-root tea, CoQ10, garlic, green tea extract you name it to buy us time. I also work for the insurance company that I am covered under outside of our Provincial health plan and through that I have access to something called Best Doctors that we are in touch with. They will review the pathology (sometimes there are errors) and make their own recomendations. They told my husband at only 5 weeks post surgery he was right to hold them off. We also in our city have access to PET scans. My husband has had CT scans before and after surgery that were clear but a PET scan will tell us more. I just don't feel right about jumping into this. I want to believe the surgeon who said in his opinion all the cancer has been removed and my husband is right now cancer free. That of course may change with the presence of that one lymph node but maybe a cautious approach because if they treat now and something comes up during or after with a rouge cell then it will be more agressive because it may be resistant to treatment after chemo. I wish this never happened. We have never had cancer in our family or known anyone with cancer so this is such unchartered territory for us. Sometimes for those first few minutes in the morning I actually forget it and everything feels normal. Yes, we are being postive. I look at our sons and they never miss a beat they can't imagine any outcome but good. I mostly feel that way but in the deepest recesses of my mind I play out morbid what-if scenerios. So I am trying to be postive but most of all I am ready to help him slay this dragon.

Also my husband has an illostemy that could be reversed in about 6 more weeks but if he does chemo etc. it will have to wait till after that. Of course one of the side effects of chemo would be a runny outpout and we have already been there with the illio filling up so fast it left him dehydrated and extended his hospital stay to 11 days and now it is finally normal after the 2 weeks of antibiotic from the infection he got from the cathadar after surgery.

I was diagnosed in January 2007; the tumor was located high up in the rectum. I had six weeks of daily radiation concurrent with Xeloda pills. The radiation did irritate my bladder/urethra, but they gave me medication that helped; also, I went into immediate menopause (I suspect my ovaries were fried by the radiation). That was not a problem since at age 51, I was definitely not planning any more children, lol!! They let me "cool off" for two months after the radiation was done, then did surgery ileostomy. The ileo was very hard to deal with, but over time I got used to it. Naturally, about the time I had it figured out, it was time for the reattachment surgery. Then about 8 weeks after the second surgery I had to start 6 months of chemo with Folfox, because I had ONE lymph node of 14 they had removed that had cancer in it. I didn't want to do the second round of chemo, but I realized that five years down the road I would want to look back and know that what ever happened, I had done everything I knew to get rid of the disease. Today I am cancer free; the neuropathy in my hands and feet is GONE; and I can go to the bathroom just fine. I do not take ANY meds whatsoever (and I was on 13 different ones at one time). Two years seems very daunting, and it is NOT easy, but God brought me through, some days one hour at a time! And now I can honestly say that although I would not wish the experience on my worst enemy, I would not change a thing. Do your research and get a second & even a third opinion, but remember that in ten years your children will be glad you are still around. You can get a lot of support and suggestions here; I surely did! God bless you and yours and help you to make the right decisions.

Thank you for the encouragement. We are now 2 months past surgery. And you are right, about the time my husband is getting used to the illeo he could have it reversed. His surgeon has been wonderfully supportive of him taking a wait & see approach to chemo or radiation in the event of a reoccurance or showing some where else. He will start monitoring my husband with blood tests and then PET scans combined with CT scans in another 3-4 mos. We are fortunate that we have one of the best surgeon's in North America. We also live in Canada and I also work for an insurance company that provides benefits so I have some of the best, including something called Best Docotors that are Harvard trained that reviews every test, pathalogy and scan. I therefore feel safe in our wait & see approach. Meanwhile I will say my husband has gotten back to normal weight and he looks better than normal. Of course the illeo does not seem natural to him and will hopefully have the opportunity to get it reversed (fingers crossed that goes smoothly). Finally after 2 mos everything is starting to feel normal. I never realized how much fear we have had. I re-discovered the faith and belief of my childhood. I always believed that your health is your wealth. It is so easy to take it for granted when you feel young and strong. Never again will I take any of it for granted. Thank you all for the inspiration. In my darkest thoughts it was so helpful to see that despite stuggles there are real survivors and success stories. We are of course not out of the woods. I won't let my breath out until we are a year in the clear and then cautiously for a few years. 5 years will be about the time our youngest will be off for university and I am looking forward to starting an adventure with my husband then. We had a 5 year plan for when our youngest was ready for university, I just didn't imagine that we would be spending it like this (cautiously). Maybe it will slow the process of our youngest growing up. Maybe we will move with him if he chooses a different place to study then our home city. You are right, I would never wish this on an enemy it is truly takes a lot of courage.

Dear Wandelein,
It`s nice to hear that things are slowly getting back to normal. You are very lucky to have such an experienced team of doctors who help you with each step of this road. As I see, your husband has decided to take a wait&see approach, which I think is quite understandable and reasonable. However, just wanted to add, that I attended Cphl conference in Germany (about medical suppliers, etc.) and what caught my eye was a cancer treatment that was offered by Latvian scientists called Virotherapy. It uses a live, natural virus that is capable of finding and destroying cancerous cells in the body while leaving the healthy tissue unharmed. As far as I understand, it is a very common method of treatment in Europe, because it doesn`t cause any side-effects and basically works as an immune system improver.
Hope this somehow helps. Warmly, spring_bee

Hi Spring_Bee, yes I am aware of the virus therapy, they are doing promising trials here in Canada right now. The government of Canada, who should have an interest in such things with a health care program, has also funded the university of Windsor in Ontario beause of promising results with Dandelion. In additon to supplements my husband is also drinking Dandelion root tea 4 times a day (and green tea). There was a man in his 70's who had stage agressive leukemia who was told after his treatments there was nothing more that could be done but suggested he drink dandelion root tea. 4 months later (3 years ago) he was in complete remission and remains to this day. Here is a link. http://www.cbc.ca/news/health/story/2012/04/20/wdr-dandelion-tea-research-grant.html Also in terms of the wait-see approach there is also a blood kit that can locate microscopic single cell cancer. If detected it may be located with combined PET/CT scan and if it is negative it would eliminate the unessesary radiation from the tests. The AMAS kit is free and the testing is $165 here is the link: http://www.oncolabinc.com/index.php
I feel we are doing a wait-see but because we are taking a chance we have to be as proactive and as cautious as possible. There has to be a better way. My 4th gr-grandmother is in the archieves of Canada as one of the first women of science. She was a herbalist and a mid-wife. She lived to be 98 in a time most people lived to be in their 50s. I really feel that if nature creates this, there are things in nature to help us. That said, life is the most important thing. We are gambling right now, hoping for the best but we are also not ruling out conventional approaches if something turns up again.

Another good link from TED our food really is natures chemo three times a day. Get out the tomato sauce and the red wine, nature has provided for us:

http://www.ted.com/talks/lang/en/william_li.html

Hi again,
just wanted to say how much I appreciate such people as you who trust in nature`s power to heal us, and at the same time, are not against conventional methods of treating cancer. I believe that balance is key factor in everything, therefore, I think various methods should be interconnected in order to achieve the greatest results!
Wishing all the best for you husband!

Thank you. We have also found a product that is available in Canada called Oncolyn and my husband has been accepted into an alternative cancer treatment as well. Fingers crossed. We still have one day where it doesn't seem like he ever had cancer and then another day where it is as all consuming as it was two months ago. I realize we are new at this. Balance is definately the key. Right now we know that as damaging as it is chemo is the only proven thing that kills cancer cells, although not a cure. Perhaps some day medicine will incorporate low dose chemo with natural methods and keep the imune system strong. Unfortunately you will not hear about the people who broke the rules while on chemo and radiation and lied about taking supplements and did much better and recovered faster from the toxic affects of the treatments that lower the immune system and make the patient so weak.