The Colon Club

Bill, welcome to the club nobody wants to join. My husband just finished chemo for stage IIIb colon cancer about a month ago and is recovering from the effects now and doing well. There are so many wonderful people on this board and so much information. I relied on it for so many questions during this journey. My thoughts and prayers are with you.

Hi Bill
Glad you found us....one of the most positive events since my daughter Deborah was diagnosed with CC was stumbling onto this wonderful place....it has been a lifeline to me and I get advice, reassurance and great support from the people here.... they are genuinely concerned and so understanding too. keep us posted and ask questions....best of luck and God bless you
Clarabelle

Hi Bill!

On Behave of the Colon CLub Board of Directors and Moderators for the Boards, Welcome and we are REALLY SORRY you had to join this fine club of ours!

I am also Stage III and was Dxed at 39 too and very glad I was not IV and yes it is more then fine to say that here, as some Stage IV's have already said they are also glad you are not and just Stage III.

I am not sure if Jayne mentioned this in her very imformative post but be sure that someone is with you at EVERY appointment and maybe even 3 people. My early appointments I had my husband and mother at each appointment and between the 3 of us we remembered everything and sometimes all three of us heard something different! LOL

Another newbie here welcoming you to the club no one wants to join.

Not much advice beyond use these people here as a resource - they truly are experts (unfortunately).

Oh, here's some: Get second opinions. A good doctor won't mind (making it a useful screening tool), and you will learn more about your disease and the options from hearing more voices. Also, many of the "big guns" like Johns Hopkins, Anderson, Mayo etc run a good business providing advise and sometimes protocals to the local hospitals. Just because the drive is long, doesn't mean it isn't worth it, and it doesn't mean you have to drive far week after week.

Good luck.

Lydia

Hi Bill,

Welcome to the club no one really wants to join! this really is a great place to find answers -- and find people who have been there done that and have wisdom to share.

One thing that really helped me was to read about other people who "made it" because I was convinced I wouldn't. (No good reason for that --- just a prior bad experience watching my dad die of prostate cancer 20 years ago).

It sounds like you were in the same boat I was in...Stage III. I was 43 with 3 girls. So as a word of encouragement, let me say that although there were some really low moments, some really scarythings, some really sad things....I am here 5 years later. I have been NED since surgery over 5 years ago -- but my oncologist doesn't count 5 years until the end of chemo -- so November is my date that I'm aiming for to still be cancer-free. Cancer doesn't mean life doesn't move forward -- in fact we've adopted 3 girls since I've been dxd. But it does change normal. I used to have a photographic memory. Now I'm luck y if I can find my car in an empty parking lot!

Hang in there!

Wendy

Welcome. We are fairly new to this battle, also. I've found lots of helpful advice and information (I posted about the anger issues!).

In the early days, we did alot of the same stuff. Digging into our relationships between hubby and I, the kids, extended family, etc. My husband was diagnosed as Stage IV, so we also had the "getting our affairs in order" stuff to deal with. But you know what? Some of that could have waited. We didn't HAVE to run out the next week, while hubby was still in considerable pain from the resection, and update our wills, wade through the medical power of attorney stuff...so my advice is to be kind to yourselves. Yes, there are some issues that will need to be addressed. But right now, the IMPORTANT issues are the ones you are focusing on....your walk with God, your relationship with your wife and son.....

Good luck, and know that there is a wealth of information and support available here. Please, let us know when you get a treatment plan.

Well, travel didn't do me in, so I was happy about that!

It is rectal cancer very low, not well defined. Digital exam was difficult and whatever the other probe was was very difficult, so there is no way to do the ultrasound at this time. I'm looking at a permanent bag when the time comes as there is no margin. From what I gather, that's nothing to really worry about, or rather there are more productive uses of energy x-p

You wont be surprised that chemo and radiation will come before surgery.

Looks like 6 weeks chemo, then 6 weeks more until surgery. We didn't talk about surgey details as I need to fosus on chemo and radiation right now. I know I could ask all about it, he would answer all. I'm happy to wait 6 weeks though. I am on overload.

Peace

Welcome to a great club to join if you have to! Someone will make you laugh when you need a joke. Someone will scold (in a nice way) when you need some reality and tons of advice just for the asking!

Rectal vs. Colon, you may see it defined in your colonoscopy report. It should say where the cancer is located of course it may not be in a term you are familiar with. Also if every doctor wants you to drop your pants to do an exam to feel or see the tumor then it may be rectal.

Good luck!

Sorry about your Dx, but don't forget to laugh too. Like you I'm young with no family history and healthy habits - yet here I am with stage IV. My husband and I have gotten through all this by staying informed and with lots of humor. It's important to have trust in your doctors and to be able to discuss your treatment plans with them. Have faith!

Bill, I'll repeat the general regret that you are meeting all of us, but this is definitely a terrific group to be a part of. As for a permanent colostomy, your life will be very different but it is only a new normal, not an abnormal. Most on here have at least had a temporary ostomy to deal with....so, we can help out quite a bit. But, the main online resource is over at the UOAA: http://www.ostomy.org/forum/index.php.

For colostomies, there is a new "plug" (Convatec Vitala: http://www.convatec.com/en/cvtus-abtusl ... k-cle.html) that came out only a month or so ago. Definitely something to ask docs and patients about.

My husband had a low tumor as well and at the same stage. Since the tumor was activity bleeding and obstructing the GI tract, a trip to the bathroom was a very unpleasant experience. I have to warn you that the neoadjuvant chemoradiation made it much worse. It wasn't till a couple weeks after the chemorad that we were able to heal up the tumor wound.

Best of luck to you. Don't be a stranger.

Bill5107 wrote:You wont be surprised that chemo and radiation will come before surgery.

Looks like 6 weeks chemo, then 6 weeks more until surgery. We didn't talk about surgey details as I need to fosus on chemo and radiation right now. I know I could ask all about it, he would answer all. I'm happy to wait 6 weeks though. I am on overload.

Peace

Hi Bill,

Once you are not on overload, you may want to talk with your surgeon about the waiting time between chemoradiation (the neoadjuvant chemo and radiation (before surgery) and the surgery. The nwere studies are showing that waiting longer (10 weeks or so) is actually helpful - it allows the radiation to continue to work in your body during that time - hopefully killing off more cells. Of course, each person is different and you've got plenty of time to look into the studies and your doctor's recommendations but thought I'd toss it out there.

Regarding the permanent ostomy - you're right - it really shouldn't be a big deal. It takes a little while to adjust but you do. I had a temporary ileostomy and I learned that if I ever needed a permanent one, I'd be fine. I'd rather live with an ostomy than potentially die without one.

You'll likely have lots and lots of questions as time goes by - please ask away.

SBL

I didn't have a big problem with the post-op radiation and chemo for rectal cancer, so maybe you won't either. I think it's easier on men than it is on women, generally speaking. If you're like me, it shouldn't really get in the way of your everyday life for 5 or 6 weeks. The knowledge that you're getting cured is more than enough motivation to see it through in relatively good humor.

Surgery, likewise, is not the end of the world. I spent 4 days and nights in the hospital and then another 2-3 weeks recovering at home until I returned to work. I could certainly get some work done on the computer in the days and weeks following my operation, but I wouldn't schedule a lot of stuff in that period. You need your rest and you'll get plenty of it. Enjoy & relax.

Chemo sucks. No two ways about it. Personally, I found that exercise really helped me get through chemo/rad and straight post-op chemo. Not everyone would agree, and there are some good arguments for taking it easy during adjuvant chemo. I ignored all of them and exercised as much and as vigorously as I could. I relied on natural nausea suppressants (exercise, ginger, cannabis), so I never needed prescription anti-nausea meds. Bear in mind that as a 2A, I only had four rounds of Xelox. 3s and 4s get a lot more, and I don't claim to speak for their experience. I was in pretty rough shape after just 4 rounds, and around here, 8-12 is pretty standard. But anyway, I biked my ass off and it worked for me.

Good luck. There are positive aspects to this experience and I would encourage you (or anyone else) to try to identify and exploit them.

I would reiterate the need for a second opinion and definitely from a colorectal surgeon. I too had a very low tumor. My first surgeon enthusiastically said I could be reconnected. The second opinion was far less optimistic and thought a permanent ostomy was likely. It might surprise you that I actually chose the second surgeon and after over seven and half hours, I ended up with temporary. Though I was quite surprise that it really isn't as bad as I thought it would be and a permanent one would have been an adjustment but not horrible. I think the bonus is I'm spending far less time in the bathroom!

Oh yeah, I'll jump in and second Eric's exercise regimenThat really helped me get through side effects and "feel normal" again. I found even when I felt like junk on the bad chemo days that even getting out for a walk brightened up my mood. Sure the first 5 mins I wanted nothing more than to return to the couch/bed, but after that, it felt good to be out walking. Then the next day, do a little more, and the next it was back to the gym, pounding out weights. Really helped me a lot

Bill,

Don't even think about feeling guilty over being a Stage III. We're all happy for you that it wasn't Stage IV. You'll find that this is an amazing board in a number of ways. In addition to information, and support in the tough times, you'll find that even those who are having a rough time will cheer for the good news that others get.
I'm glad you found this board.
My best wishes for you,
Dianne