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Old 04-24-2007, 04:54 PM   #1
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Steven94598 HB User
Ulcerative Colitis + Stage 3 Colon Cancer

Folks:

I'm 38 years old, 20+ years with inflammatory bowel disease...initially type-undetermined...Crohn's diagnosis for 10+ years. Just had a colonoscopy and my doctor changed my diagnosis to Ulcerative Colitis. Apparently, I have no visible signs of IBD activity at the time, but a biopsy from a small red patch came back positive for adenocarcinoma.

My GI suggests that I can get away with having a partial colectomy and having annual colonoscopies to detect any recurrences. My surgeon (and a few other GIs) claim that total colectomy is the only answer due to the risk of recurrence.

I'd much rather do the partial and retain normal body function.

Has anyone in a similar situation heard of or had a partial?? How risky is this?

Also, if I do get stuck going with the total removal, one GI told me NOT to get reconnected with an internal pouch due to the risk of the IBD flaring within the pouch. Ugh!

Any experiences/thoughts?

Last question...None of my doctors has mentioned seeing a hematologist/oncologist. Did you see one before the surgery or only after the surgery?

Thanks!

-- Steven

Last edited by Steven94598; 05-21-2007 at 10:14 AM.

 
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Old 05-14-2007, 10:20 PM   #2
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Re: Ulcerative Colitis + Colon Cancer...

Disappointed to see 147 reads and no replies. I ended up having a sub-total colectomy on May 11. Just out of the hospital this evening. Still waiting for the pathology reports. The tumor was 4cm, but I'm not sure if this is considered small or large in the scope of things.

 
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Old 05-15-2007, 06:01 AM   #3
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Re: Ulcerative Colitis + Colon Cancer...

So sorry you got no replies the first time. Maybe no one had a similar experience but we could have acknowledged your concern and given some support.

I hope you are recovering well from the surgery. I guess you are now waiting to hear if you will need chemotherapy? Let us know what the outcome is of the path reports and if you will be needing further treatment. There are lots of people on this board who have been diagnosed and treated and are doing well, which will be encouraging for you.
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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 05-15-2007, 06:03 AM   #4
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Re: Ulcerative Colitis + Colon Cancer...

Hi Steven

I have Crohns and Rectal cancer but did the chemo and radiation without any colon removal at this point.

I am afraid if they find anymore, I have to have a full colon removal.

Are you feeling better? The waiting game now is awful. I have to wait till things heal to find out if the cancer is gone.

Good Luck and let me know how your test results come out

Last edited by crohnie; 05-15-2007 at 01:41 PM.

 
Old 05-15-2007, 08:54 AM   #5
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Re: Ulcerative Colitis + Colon Cancer...

Hi Steven,

I am 34 years old, and just had part of my ascending colon removed 2 weeks ago due to a 7 cm tumor that was found. It was Stage II colon cancer. I have recovered well from the surgery...bowels are working normal again. I'm going back to work full-time after 2 1/2 weeks off.

At this time, I don't know if I'll be having any chemo treatments or not. At first my oncologist said he wasn't recommending any. He said he would do preventative chemo if I twisted his arm. I am seeing him on Thurs. for another consultation.

I'm just trying to take one day at a time. All of this has been very overwhelming for me, and I've been on an emotional roller coaster since.

I wish you the best.
Diane

 
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Old 05-16-2007, 01:17 PM   #6
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Unhappy Re: Ulcerative Colitis + Colon Cancer...

Well, I've been feeling better than I expected after such a major surgery...until now. I just got my pathology results and they weren't what I wanted to hear:
- 4cm tumor extending through the bowel wall into the fatty tissue with two positive nodes
- Stage: T3N1MX

My surgeon setup an appointment for me with an oncologist, but they can't see me until Monday at 5pm. Is it reasonable to give a patient this kind of information and then make them wait 5 days for answers? What are my survival chances? I am really freaking out right now. I'm also afraid to do too much research on the Internet as the first set of data that I found was a lot worse than I expected.

Help?

-- Steven

 
Old 05-21-2007, 10:02 AM   #7
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Re: Ulcerative Colitis + Colon Cancer...

Thanks for the supportive posts. Here's an update...

So it turns out that the 4cm tumor extended through the bowel wall and into the fatty tissue. Two out of 14 nodes were positive. Thus far, the staging is T3N1Mx (IIIb) with 5-year survival odds of 60% without adjuvant chemo or 83% with FOLFOX4 adjuvant chemo (12 2-week cycles, 3 days of in-office infusion followed by 11 days of trickle with a chemo pump). I'm hoping that my that my age (38) gives me slightly better odds than the charts. I have a PET scan scheduled this week. I'm hoping it hasn't spread too far since my CEA levels are low and the CT scan was clear.

My physical recovery from surgery (sub-total colectomy leaving me 25 cm of colon) has been quite miraculous so far. I progressed from ice chips to minimal clear liquids to unlimited clear liquids to full food in 3 days. I was released the evening of the third day after my surgery.

Unfortunately, the staging information has thrown me into emotional turmoil. I can't seem to keep my brain off of thoughts of death. I'll be calling my MD today to see if anti-depressants or anti-anxiety medicines might help me through this. I also have an intake interview today for a cancer support group at the local Wellness Community Center.

My "chemo teach" is this week. I'm not sure yet how long after my surgery they'll wait to start my treatments. I hope that they don't wait too long as I'd really like to put all this behind me as quickly as possible and move on with life. At this point, my oncologist is recommending that I go on long-term disability until I finish my treatments. I am really nervous about going bonkers having nothing to keep my brain occupied. If it weren't for my partner, friends and family I wouldn't have made it this far.

Thanks for listening.

-- Steven

 
Old 05-21-2007, 04:43 PM   #8
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Re: Ulcerative Colitis + Colon Cancer...

Steven, I have stage IV cancer and have had 10 chemo treatments thus far, with 2 to go. I, too, take Folfox. My treatment plan is as follows: I go every other week for about 3-1/2 hours for my chemo, plus Avastin. Then I go home with a pump for 48 hours and return to the oncologist's office for pump removal. Chemo is grueling, there's no way to sugar coat the facts, but you will make it through it. The time goes quicker than you probably think right now. My biggest problems after treatments are diarrhea and severe cramping which usually start shortly after the pump is removed. In 5 months I have only been physically ill once, and that was due to too much fresh vegetables while on chemo (I also have a colostomy). My sister came and made a delicious batch of stir-fry at that time which I couldn't resist

Keep your chin up and remain close to those who love you.

Pam
I John 5:10

 
Old 05-23-2007, 10:24 AM   #9
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Re: Ulcerative Colitis + Colon Cancer...

Steven, hopefully by now you have been able to hook up with your oncologist. Please let us know what he had to say.

Pam
I John 5:10

 
Old 05-26-2007, 09:26 AM   #10
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Re: Ulcerative Colitis + T3N1Mx Colon Cancer...

PammySue51: Thanks for the tip. I love stir-fry, but I'll stay away from it for a while. I tried a salad the other day and things didn't go so well. At surgery + 2 weeks, I thought it might be safe, but I now know that my food transit time can be under an hour. ;-)

Most importantly, my gastroenterologist put me on Lorazepam and it is a wonder-drug. I am no longer obsessing about horrible thoughts and am actually doing almost normal things (went out for dinner with friends etc.) During my chemo-teach, the oncology nurse upped my dosage of Lorazepam for the first 5 days of each chemo cycle as it seems to have the added side-effect of helping with the nausea (BONUS!).

I'm having a "port" installed on June 7. Initially, I wasn't too concerned about this because the doctor said I wouldn't even feel it once it was in, but at my first group support meeting, one of the ladies was complaining that her port was really hurting her. As they say, everyone's experience is different. I'm hoping mine won't be too troublesome.

They'll be starting my first treatment on June 18. If all goes well, I'm hoping to finish my last cycle the week after Thanksgiving and then take my partner to Disneyworld as a celebratory vacation. Note: Whereas before, I couldn't see past the chemo treatments, with the Lorazepam I am now making plans beyond the treatments. The realization that there is life after cancer is quite inspiring.

I think my biggest concern about the chemo is the neuropathy. I'm either used to the other symptoms (due to my 20+ years with Crohn's/Ulcerative Colitis) or they're only temporary. Several of the people in my group mention that neuropathy is more common and more permanent than the oncologist let on. They STRONGLY recommend acupuncture at least once for each chemo cycle. Apparently the acupuncture helps mitigate the neuropathy. While I've never tried acupuncture and I'm not sure I believe in it, I'll give it a try.

I had my first PET scan yesterday. Previously, my CT scan was clear and my CEA levels were low. All I can do now is pray that the PET doesn't show anything. I have a CD with the images already, but no one has read them yet. I'm afraid to look at them myself as I'm sure I'll find something to terrorize myself with that will actually turn out benign.

Finally, I have to say that I'm finding supportive friends and family a huge help. I've been sending out weekly status emails to my distribution list of friends and family (nearly 100 members) across the country. Each week, I get dozens of replies. When I'm having a difficult night sleeping and everyone else is asleep, I open these responses and read them over and over. Seeing all the support has a calming effect that gets me through the night. Since they're in email, I have access to them whenever I need. These emails have also been a huge help in lining up people to help with the practical issues (e.g., food delivery after treatment, rides to/from certain appointments etc.) I've found that many people want to provide assistance, they just don't know what to do. By letting people know what my needs are through these emails, I get all the volunteers that I need often from people that I wouldn't have thought of asking outright (like out-of-state friends shipping frozen turkey meatballs from Texas to California!). I'm also quite happy that it looks like I won't have to lean too heavily on any one person.

So, things are looking a little brighter this week. I hope someone else finds something useful in this post and that everyone has a nice holiday weekend. My partner's mother is visiting us this weekend from Rhode Island, so I've got ample distraction to keep me busy for the next couple days.

Peace to you all this weekend.

-- Steven

 
Old 05-26-2007, 11:01 AM   #11
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Re: Ulcerative Colitis + Colon Cancer...

Steven

I have had my port since March. It has hurt for 3 straight months. It is now starting to be a little more comfortable.

I hate it and you will always know it is there. Trust me

Good Luc

Last edited by crohnie; 05-26-2007 at 05:39 PM.

 
Old 05-26-2007, 01:11 PM   #12
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Re: Ulcerative Colitis + Colon Cancer...

Oh, why did you have to say salad? I haven't had a salad since last August. When I see my husband eating one or see a salad commercial on tv I could just scream. Right now I'm thinking of spinach salad (we call it Betty's salad here in Ohio) and chef's salad, among myriad other salads. Yes, there will be foods you will miss and, unfortunately, a lot of them are fresh fruits and vegetables which we need so desperately. Do you have a colostomy?

As far as the port goes, in my opinion it's worth it so they don't have to try to find a vein every time you go in for treatment. Mine wasn't uncomfortable at all until I lost a ton of weight during my very lengthy stay in the hospital for the flesh-eating bacteria last fall. After that long (7 week) stay, needless to say my veins were shot. Hopefully, after chemo I won't have to still go in for Avastin and they can take it out. Mine doesn't hurt at all, but hits me right in the bra line which is an annoyance.

In addition, I don't suffer from too much neuropathy. Shortly after treatment my hands and feet feel tingly for a couple of days, but that's about it. I've been blessed as I know a lot of people have neuropathy.

Support of friends and family is truly a blessing! Having food delivered is a blessing, too. Just be sure it's stuff you can eat. When I get diarrhea I have to stay away from the dairy products and fried foods. I sure miss cheesy-type casseroles then. However, I always have my home-made chicken noodle soup in the freezer (I make it before chemo and freeze in single serving zip-loc or glad containers) which I eat during those times. Which reminds me, I gotta send hubby to the store for ingredients for my next batch. Gotta have it made by Wednesday, as I do not feel like cooking while I am on the pump.

Sounds like you have gotten over the initial shock and your spirits are lifting. That is good, as a positive attitude goes a long way in treating this hideous disease. I very rarely even think about my cancer, truly. Maybe that's good...maybe not so good...but our God is much much bigger than cancer! I realize a lot of people aren't into religion and I really don't want to offend anyone on here...that's just my opinion. What I do know is that He saved me from a sure death in September and I am miraculously walking, and that's good enough for me!

Have a wonderful Memorial Day weekend.

Pam

I John 5:10

 
Old 05-26-2007, 02:21 PM   #13
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Re: Ulcerative Colitis + Colon Cancer...

First of all, great news! My oncologist just called. They read my first PET scan. It was perfectly clear. So, this confirms my "odds" and means that we're working towards cure as opposed to management. So now I'm T3N1M0. WooHoo!!

Crohnie: I'm so sorry to hear that you're having difficulties with your port. I'm curious what your doctor says about it? Do they ever move/adjust the port if someone is having difficulties with it? I've met some people who have the port in their shoulder/chest and others who have it in their arm. I wonder if one is less problematic than the other.

PammySue: Before all this, my partner and I had a huge salad for dinner probably 4 times a week. I do miss it. Surprising since I'm originally from the midwest (Chicago) where I was raised primarily on "meat 'n potatoes".

I don't have a colostomy. Because of my ulcerative colitis, several doctors recommended taking out my entire colon and giving me a bag. At the time, I really didn't want it. I was afraid of the impact it would have on my life. My Gastroenterologist, however, felt that it was reasonable to do a partial. They left me 25cm of colon and attached my small intestine to the remainder. After the surgery when I found out it was Stage III, I felt really silly worrying about the bag. Now that my PET was clear, though, I might come out the other end of this whole thing almost normal (not that I was normal before :-)

I guess I have a few questions for my surgeon about the port and its placement. Fortunately, I don't have to worry about bra-lines as I'm not into drag.

Completely agree about the importance of family and friends in getting through this. My family feels quite strongly about religion (raised Jewish), but I'm personally not too keen on organized religion. Being gay, I've seen too many families broken apart due to religious beliefs. I do, however, consider myself spiritual. I am very blessed to have a very loving, loyal, and supportive partner and the support of both of our families. I respect anyone's beliefs as long as they respect mine in return. I only wish that the feds would recognize our relationship as it would make things much easier with respect to health insurance and avoid very complex and expensive issues/taxes if something happens to me and my estate passes to my partner. At 38, its a real dose of reality trying to learn the complexities of estate planning for unmarried couples and making sure that my partner doesn't lose the house and will be ok. (I'll get off the soapbox now)

Anyways, today is a great day for me. I wish you all well. I'm off to sit with my partner and my mother-in-(almost)-law in the yard.

Regards,

-- Steven

 
Old 05-26-2007, 03:19 PM   #14
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Re: Ulcerative Colitis + Colon Cancer...

Steven, that is good news indeed! You definitely have cause for celebration today .

I'm from the midwest, too, and I love my meat 'n potatoes. Unfortunately, I also love my sweetcorn which is supposedly a no-no for people with a colostomy. My absolutely favorite dinner in late summer is a BLT with freshly-picked sweetcorn, with homemade strawberry shortcake for dessert. There are benefits to living in the midwest .

I'm glad you did not take offense by my religious comments. I hesitate to say those things sometimes because we all have different beliefs. I do understand what you said about families being broken apart, however. I have a good friend who is gay. His father literally disowned him years ago due to his (the father's) religious (but not necessarily Christian) beliefs. How a father can do that, I don't know, but I do know that Doug has to meet secretly with his mom. It's very sad and it bothers him a lot. We have had many talks about it.

One thing is for certain -- we are definitely all united in this fight against the dreaded disease of cancer! Our job on this board is to give each other advice, lift each other up when we need it, and celebrate our victories in cancer whether they are large or small.

Anyway, enjoy your Memorial Day weekend! I'm rooting for you!

Pam

 
Old 05-28-2007, 07:40 PM   #15
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Re: Ulcerative Colitis + Colon Cancer...

Steven,

My mother is 81 and a 10 yr survivor. She had the initial surgery to remove the tumor and part of her colon. Two years later the tumor and cancer was everywhere, wrapped around the tube going to her kidney. She has been canceer free for 10 yrs. I know her "feisty" nature and her determination to survive plus her faith has sustained her.

Keep fighting and the only other advice I have is find out who the absolute best is---and go to that person----the very very best! THey all charge the same so you might as well have the best possible doc.

I was just diagnosed w/ulcerative colitis---and had a biopsy done, waiting to hear the results but no cancer is suspected

I'll hope for your continued progress.

 
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