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Old 06-14-2004, 07:11 PM   #1
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Just Got the Word

I am a 37 yoa male in Omaha, Nebraska. Today, I got the word that the biopsies of the ulcer in my rectum from my colonoscopy last Friday are adenocarcinoma. I start the staging diagnostics in two days. No symptoms other than a tiny bit of bleeding and pain; thought it was a hemorrhoid but my family doc made a head's up call and sent me to a specialist immediately.

At this point, I don't know how bad this is. The colorectal surgeon has already mentioned the possibility of a permanent ostomy, because of the location of the ulcer. But he ultimately concludes, rightfully, that he doesn't know yet--although he says a cure is a very real possibility.

I have a wonderful wife, a 16 month old boy, and a bun in the oven due in January.

And I'm scared. Cancer never entered my mind as a possibility, at least not for a decade or two.

I found this board by a random search of the net. It's been a godsend; while I'm no less scared, I am a lot more hopeful.

First, thanks to all of you that have posted in the past. I've read through many posts and it helps. Funny how the words of a stranger can bring comfort in a difficult hour.

Second, any thoughts or advice? It's been a rough day, what with the boy's new molars and contemplation of my own mortality.

A salute to all of you, you survivors, as I prepare to join your ranks.

Kevin

 
Old 06-14-2004, 09:38 PM   #2
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Re: Just Got the Word

Kevin, it sounds like you have a good doctor, and that most likely this has been caught early. I am a colon cancer survivor (almost 4 years). Mine was higher in location than yours so I really can't offer any insight regarding your specific problem. I found a lot of help on another message board as well. *****.com has an excellent message board called colorectal cancer support group, with a lot of very knowledgable people who can help you. I wish you all the best as you begin this journey.

 
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Old 06-15-2004, 05:05 AM   #3
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Re: Just Got the Word

Thank you. I'm glad and heartened to hear about your success. I believe that I'll have some idea in the next week or so have early we have caught it; I'm on pins and needles--practically literally--the behind is a bit sore .

 
Old 06-15-2004, 08:45 AM   #4
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Post Re: Just Got the Word

Kevin,

I admire your doctors quick referral. Goes to show you he's a good one and on top of things.

I just want to let you know there is ALOT of hope in a cure. Your young and when caught early the two can make for a full recovery.

My father had stage 3 colon cancer last yr. He just turned 75. It was higher up in the colon. It spread to a few lymph nodes and the prostate. I'm glad to say that he's doing very well. He's had different treatments to deal with but it has all worked out for the best.

Don't give up hope no matter what. I know it's hard but try to have a positive attitude about your recovery and you'll do yourself a world of wonder. And don't forget, it's ok to be scared...your only human right?

I don't know your religion or whatever but I find when you ask God for strenghth and healing he will answer. Good Luck and keep us posted.


L-Town

Last edited by L-Town; 06-19-2004 at 06:26 PM.

 
Old 06-15-2004, 10:24 PM   #5
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Re: Just Got the Word

Really thinking of you, Kevin. Please keep us posted as to what you find out and how you are doing. Be sure that your doctor orders a CEA blood test for you. It is important to know what your level is right now, and then it is compared later during your follow up visits and any treatments that may be necessary. It is referred to as a "tumor marker". Colon and rectal cancer is usually a slow growing type of cancer. I am betting that yours has been caught early and you will be just fine.

 
Old 06-16-2004, 05:01 AM   #6
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Re: Just Got the Word

Thank you for your advice, thoughts, and prayers. Tests start tomorrow with an ultrasound and CT scan. I'm hoping for good news.

So far, after a couple days with no information other than a positive biopsy result, it is a psychological battle. Concentration is difficult. My wife and I have been through a hundred different scenarios and possible outcomes--all made-up, of course, since we don't have information (yet).

The one principle that has emerged through this process of self-inflicted mental torture is that quitting is not an option. I wasn't sure how I would react, and I still haven't been tested yet--that is yet to come--but I am resolved to do whatever it takes to be with my family for as long as possible. It may be that a cure is a realistic possibility, even a probability or likelihood, and that I'm all worked up over nothing. Regardless, by God, I won't be going quietly or anytime soon.

Thanks again.

Kevin

 
Old 06-16-2004, 07:41 AM   #7
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Re: Just Got the Word

Kevin, with your wonderful positive attitude, you have already won at least half the battle. When you consult with doctors, write things down and have someone with you. Sometimes we forget what was said due to stress and it's good to have someone along to help. Take a list of questions. Keep us posted and best of luck!!!

 
Old 06-16-2004, 04:50 PM   #8
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Re: Just Got the Word

Kevin:

I am 31 and was diagnosed with Stage 3C Rectal Cancer in September. My Tumor was really low 2-3cm from the anal verge and they still reconnected-- I had a temp ileostomy, and radiation and chemo pre-op. Please go to a clinic and put your semen on ice. Even if you think you are done having kids. I have 2 kids, 4&8 (two boys) and my wife and we always wanted a third. This will affect your ability to perform, hopefully not bad, but realistically it will. Putting some on ice now is good because even if you regain abilities, if you have radiation, and chemo they will tell you you can't use your semen for 3+ years.

Next step is to get a rectal ultrasound to determine how deep the tumor is-- it's not that bad, just a little wand that they insert rectally, bounces sound waves and they get a picture to see if it has penentrated beyond the wall of the rectum. Also, they will schedule you for a CT scan of your abdomen and pelvis, and CT or X-Ray of your chest and a PET scan to identify spread.

Your next meeting, because of the proximity of the tumor, will probably be with a radiation oncologist and oncologist. They give you chemo in combo with radiation for about 2+ months to shrink the tumor back to make the colorectal surgeon's job easier. Also, make sure you are seeing a colo-rectal surgeon, not just a general surgeon who does come colo-rectal work-- ask around. Don't be afraid to ask how many resections they have done on the rectum. It's a unique area, and you need an expert in the field. They need to be able to resect with a margin of at least 1-2 cm-- meaning 1-2 cm on either side of the resection needs to be clear of cancer. There are A LOT of nerves around this region in the rectum which control urination, erection, etc. This is why I told you to bank your sperm just in case.

I have kind of become the young "rectal cancer" guy survivor on this site... haven't seen too many other young people like me and you, but ANY questions you have, I would be happy to answer for you. It is a VERY tough journey, but, you sound like I did when I found out... VERY POSITIVE, and this is VERY IMPORTANT. There are also other people on this site who are VERY supportive, helpful, and angelic. They too will be willing to share their experiences. Keep up the faith man and welcome to the site.

Talk more later,
Regards,
CancerDad (aka James)

Last edited by CancerDad; 06-16-2004 at 07:11 PM.

 
Old 06-17-2004, 12:48 AM   #9
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Re: Just Got the Word

Kevin:

I haven't hit the board in a little while and wanted to get caught up. Sorry, but I wanted yours pushed to the top so you would see it! So Im jusy giving you a boost to the top of the line. Keep in touch.

 
Old 06-17-2004, 05:28 AM   #10
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Re: Just Got the Word

Cancerdad:

Thank you for your comments and advice. I go this morning for the ultrasound and the CT scans, and upper GI on Monday. I expect I will have a lot more information in a few days.

I'm not sure of the distances involved, but the surgeon already mentioned that a bag might be a possibility. He did say it was too early to tell. He's a colorectal surgeon, kinda young (41), but with a stellar reputation. In my current state of mind, if I was told surgery with a colostomy would pretty much guarantee no problems in the future and I could see my child (children, in January) graduate from high school, I don't think I could get it done quickly enough.

This ulcer in the low rectum is getting a bit painful, but it's well-controlled with meds. I hope the ultrasound is easy; the digital exams have had me about jumping with pain. Learning that "pain in the ***" isn't entirely a colorful expression of emotion hasn't been fun.

I really appreciate your past posts; know it or not, you've been a part of my coping mechanism.

Incidentally, do you happen to know of any other boards that are especially good?

I'll post more later.

Kevin

 
Old 06-17-2004, 08:41 AM   #11
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Re: Just Got the Word

Kevin:

Best of luck on your tests this morning. Isn't that the truth... I think all of us on this board fighting like hell would be willing to settle for a bag in a second to make things so that we can go on. And hell-- what are you talking about high school... you have college, marriage, grandkids, etc. to get through. And YOU WILL! My thoughts are with you that it has not spread.

Rectal ultrasound will probably be painful for you, so take extra drugs. This test will reveal a lot though-- how deep the tumor is, and hence, whether it could have spread.

Sounds like a great pick with the colorectal guy... the younger ones often times have much better dexterity and wherewithall to do this often LONG procedure in the OR... mine was scheduled for approx 3 hrs.. ending up taking him and one of his partners around 6.5 hours to painstakingly resect my rectum and reconnect.. then get the nodes and create a temp ileostomy. If the tumor is in the rectum, you can count on a diversionary bag for a while. Don't worry, it's weird at first, but definitely livable with one. They always prepare you for a permenant bag, just in case. Most times these days you won't get one.

What my surgeon REALLY downplayed was all the impotence and urinary problems you COULD have afterward. He kept telling me there's Viagra and make sure I bank my sperm, which, by the way you probably do still have time to get a couple samples in-- trust me, it will make you feel better for some strange reason, just in case, knowing they are there. Weird experience, man but you can do it! Just ask your surgeon where you can bank it. -- well I've seen a urologist, before I started my post chemo rounds, and let me tell you, all I got from the Viagra and Cialis was a wicked headache and flushing, and felt like I was in a psychodelic era with the blue color. There aint nothing happening down there. -- There are implants, and "other" ways to take the tablets, as well as injections. My wife and I always laugh at those commericials on TV--"when the time's right, will you be ready?"-- SURE they work. Anyway...

Also, checked out of the hospital after the first surgery unable to urinate-- had to learn to self cath, something that's no big deal now, but was for me then, and hopefully won't be an issue for you.

I come from an area of employment where I knew a lot of these surgeons, and was able to "hand pick" the best one that I've ever seen for low anastamosis (reconnection of the bowel), or go ANYWHERE b/c my former company had connections with all the greats. And I got to talk to others about who they would go to, etc. So I was lucky to have a great surgeon... a lot of the difficulties I'm sharing are a possibility because of where they are working. I was REALLY disappointed, though, noone emphasized the urinary/impotence issues to me more-- maybe they did, but I just couldn't hear it to get thru. Anyway, I DON'T WANT TO TELL YOU TOO MUCH AT ONCE! You get thru it day by day, trust me. I'm just excited to be able to share a lot of this stuff with another younger guy like yourself, like me, who is about to go thru a lot of what I already have. It's hard to find younger people out there, although they ARE out there. I'm glad you have read some of my posts and they have helped. I can't recommend another site for postings, only wesites with useful info, otherwise the moderators reading this get angry and ban you from the site. In all honesty, this is my favorite board though.

I didn't have a heck of a lot of pain pre-op-- except after radiation, and chronic severe pain now. I had rectal bleeding and urgency as my first complaint when I was 28 and my MD never referred me. I had to self refer to a GI for a colonoscopy. It is treatable though, and you have such a great attitude. I kept/keep thinking about wanting to see my kids grow up, and you learn to appreciate, tolerate, and understand so much better.

Keep the faith,
Great hearing from you,
Please keep me posted.
Hope I didn't just bombard you with info.
--James

ps my wife offered to talk with your wife if you bring her to the board. She said she wished she had someone to talk with throughout all this. Let her know that, please.
PPS We're from CT in case you were wondering-- there are many international people on this board. A lot of great ones from the UK and a wonderful person and survivor wife from the Bahamas.

 
Old 06-17-2004, 09:29 AM   #12
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Re: Just Got the Word

Thanks James! I would like to stress though, that everyone is different. My husband is alot older than you guys. He had surgery immediately following diagnosis as there was concern that he may get a blockage. He was told that he would have to have a colostomy but the surgeon did such a great job working around the muscles that my husband did not even have temporary colostomy. Once the margins were clean, the surgeon felt he could resect without the colostomy. It is such an individual experience. The greatest problems experienced by my husband were more related to his already enlarged prostate (benign) which decided to really play up and necessitate a catheter until recently when he had a prostate reduction surgery. As you now know, the effects of chemo and radiotherapy are also very different for each person. It is quite often during the last weeks of the combo chemo/radiotherapy that one really feels the effects but it is fairly short lived. It is like you have to give maybe up to a year of your life to fight the fight...and when you look at that length of time compared to your life before and after, it is not so bad. You will get through it. People keep saying to me that I am so strong and how have I managed it and my reply is that you have to!! And you do! Love becomes stronger, faith can too, determination gets you through the bad days.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 06-17-2004, 03:02 PM   #13
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Re: Just Got the Word

Hi everyone

Kevin I hope all your tests are not too strenuous. I have been checking out the boards over past week but not been in the mood for serious comment. Has been strange week........ husband going back to work and coping ok, mother in nursing home and wondering if she will ever come out again

I've never really talked about some of the themes that cancerdad/james picks up on like the urinary challenge and sexual performance. I am too english for my own good !!! but in for a penny in for a pound ....

Husband is now 45 so is not much older than james and certainly "under-age" for what is considered the norm in colon cancer cases. Urine probs had actually started pre-bowel resection. Symptoms were just a case of when you have to go , you have to go but it was not until after his op and were told of the extent of tumor that we put 2 and 2 together. This was because his primary tumor had "attached" itself to his bladder and put pressure on the bladder. This meant an extra week post operatively in hospital while they kept his catheta in but since then he has had absolutely no problems with his bladder at all. Brilliant.

Sexual performance = kind of nil. I say kind of for 2 reasons..... Firstly, we have always, always been a team...........the best of friends......... soul mates... supportive of each other no matter if our opinions differ...... so the fact that i have had to care for husband through his illness has bought us closer together.... and the fact that he has supported me through my mums illness has bought us closer together........ well i think we have both tried to bring the positve elements of our relationship to the foreground..... the caring and sharing part. Secondly, the sexual part has taken a definite decline but this has been kind of positive too. i know that must sound weird as you surely cannot get more sharing than the sexual/sensual form. We just dont think about it now... but concentrate on everything that takes up the rest of your life like family and friends, taking pleasure in preparing a shared meal, making the most out of a warm summer evening. We were offered sperm bank option but declined for medical reasons on my part. That was hard, i must admit. We had previously made a conscious decision not to have children, and now we simply cannot. These are probably feelings i would have felt getting close to menapause. So , deep breath, hold head high and ignore the parents who choose not to associate with childless couples.

Hope the above helps. Just to reassure you a little too... husband diagnosed stage 4 last may............ a year of resections/chemo/radiotherapy........ clear as of now............ next tests August/September........ he finished his last treatment middle of April.

Tips: always take someone with you to docs/oncs/surgeons. Always challenge what they say... ask lots of questions like how did you decide the treatment plan, what other options are there, is my case typical to those you are treating, what kind of treatment routine do i need to get into, who do i see next..... you get the idea.

Good luck to you
Ktee

 
Old 06-17-2004, 03:39 PM   #14
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Re: Just Got the Word

Hi ktee...your post is so moving...you always say it so well. I am sorry to hear about your mother but really, she has done well in the circumstances....she must have your spirit. As to your husband, he has done exceptionally well and you have been such a source of strength to him. I agree that priorities in times like this change alot and just waking up and finding your husband lying beside you is wonderful. The times when we dare to dwell on the thought that it might not always be like that are so painful and unbearable. Intimacy has a truly different meaning in times like this. It is, as you say, sharing and caring that are the most meaningful.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 06-17-2004, 06:41 PM   #15
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Re: Just Got the Word

James, Alison, Ktee, and everyone else:

Thank you again.

Had the ultrasound today. Let's hear it for Lidocaine lubricant! Also had a CT scan; don't know if the barium has adverse effects, but I have felt cold all day. And sleepy, but that seems to be from stress as much as anything.

Here's the initial diagnosis from the surgeon. T3 - nibbling at the fatty tissues. He's not sure about node involvement--nothing certain off the ultrasound. Tentatively, I'm a N(.5). He wasn't sure that the lymph nodes, which were a bit inflamed, were even large enough to biopsy. He said there was a clear line of demarcation with the prostrate and it wasn't involved, and that's good. He used the word "curative" about 15 times and explained that I wasn't fighting for time, but fighting for a cure.

He reccs about 5-6 weeks of radiation and light chemo, and surgery in 6-8 weeks. He wasn't sure about chemo afterwards.

The ulcer is about 1 to 1.5 cm off the most distal sphincter muscles. He said he thought about 80-90% chance I get a bag, but that he won't be sure until surgery. Actually, I've been reading posts at the united ostrology association site (almsot a gang of cheerleaders, they are) and the bag doesn't sound bad. He noted that the reason I'm having pain is because of the involvement of the sphincter musles, which do have nerves. Oddly, it was the pain that got me to the colonscopy--the fact that may necessitate a bag may be the fact the extends my life, for without pain it would have been some time before I got the diagnostics.

I'm exhausted and the fight is just beginning, but tomorrow is a new day and I'm breathing tonight.

I'll probably meet with oncology next week. A bit worried about the aftereffects of the preop regime--but, how I want this invader out of me.

I simply cannot thank you all enough for your words.

My wife is a treasure. Her strength and love--something I think I took for granted before--is a power cell to me. She's had me from the first date, but I never knew what that really meant. I'm starting to learn what the essence of love is, and I weep, with joy, at the realization. I'll introduce her to the board.

Kevin

 
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