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Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Dec 28, 2017 6:08 pm
by gmcbrazen
Good News, It was easy to get an appointment with MD Anderson. I called and have an appointment the same day as with my GI specialist. So I will be able to hear both plans and treatments on the same day. Then decide what to do. MD anderson's appointment will be in the morning and the GI will be in the afternoon. Every thing is moving fast, and I am so thankful for this board. thanks Deb M for reminding me how important it is to get a second opinion! I would not even had made the effect to get into MD Anderson.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Dec 28, 2017 7:15 pm
by NHMike
Make sure that the MD Anderson has access to your biopsy results and scans if they are available. If both hospitals have access to EMR, then you'd just need to provide approval. I had to bring DVDs from two hospitals to Dana Farber to their imaging department before my appointments so that the doctors could review them.

Colorectal cancer is usually a team affair. You have your GI specialist, oncologist, radiology doctor and surgeon. My GI specialist ran point until I had my radiology doctor - oncologist - surgeon team ready to go. Then the radiology doctor and oncologist managed their things and then control passed to the surgeon. In your case, you probably won't be working with a radiology doctor. In my case, the recommendations for the second opinions at Dana Farber were the same as those of the local doctors so I had chemo and radiation done locally. The big difference was in using their surgeon as opposed to using a local surgeon.

In my case, the GI specialist just arranged the appointments with the local oncologist and local radiologist and they presented their treatment plans to me. He wasn't a cancer specialist - I haven't talked to him since July but I will be hopefully after I'm done with all of the cancer treatments. I would guess that your GI specialist would present findings and talk about your treatment plan at a high level and then set you up with specialist cancer doctors for the specifics. Of course I could be wrong and your GI specialist could have detailed plans - but I haven't heard of this happening.

When we set up the second opinion appointments at Dana Farber, we made appointments individually with three separate doctors. These were spread over two days as it was quite challenging getting nearterm appointments.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Jan 04, 2018 3:52 pm
by gmcbrazen
Went to MD Anderson Yesterday. I took my scan on CD. But that was images they wanted the report. They ordered another scan for the chest and lung area. Waiting on that information. I am also waiting for the surgeon to call and make an appointment. MD Anderson said they could not tell anything with out the scan report, but based on the Colonoscopy image, blood work, and I am not bloated, constipated, falling down, nor do I have back or neck pain, they believe it is not yet stage 4. But they are going to wait until they see the scans.

I went back to my GI who had the abdomen scan results. The scans came back clean. No liver damage and they could not see the tumor in the scans. This indicates that the tumor may not have broke through the colon wall. She said it may be in stage one, but she will not know till after the surgery. They need to check the surrounding lymph nodes to see if they have been infected. But she agrees that it is probable in the early stages, and she said maybe even stage 1.

Both agree that I probable will not need the surgery that requires a bag that requires changing. Neither would talk about chemo as they felt I was getting ahead of myself. It has not been established that I need chemo after the surgery and wanted to wait. So my fingers are crossed that it will be just the surgery, and that the surgery will be scheduled soon. I want this to be over with.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Jan 04, 2018 4:21 pm
by NHMike
gmcbrazen wrote:Went to MD Anderson Yesterday. I took my scan on CD. But that was images they wanted the report. They ordered another scan for the chest and lung area. Waiting on that information. I am also waiting for the surgeon to call and make an appointment. MD Anderson said they could not tell anything with out the scan report, but based on the Colonoscopy image, blood work, and I am not bloated, constipated, falling down, nor do I have back or neck pain, they believe it is not yet stage 4. But they are going to wait until they see the scans.

I went back to my GI who had the abdomen scan results. The scans came back clean. No liver damage and they could not see the tumor in the scans. This indicates that the tumor may not have broke through the colon wall. She said it may be in stage one, but she will not know till after the surgery. They need to check the surrounding lymph nodes to see if they have been infected. But she agrees that it is probable in the early stages, and she said maybe even stage 1.

Both agree that I probable will not need the surgery that requires a bag that requires changing. Neither would talk about chemo as they felt I was getting ahead of myself. It has not been established that I need chemo after the surgery and wanted to wait. So my fingers are crossed that it will be just the surgery, and that the surgery will be scheduled soon. I want this to be over with.


This is sounding quite good.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Jan 04, 2018 6:16 pm
by gmcbrazen
Yes I agree. It is looking better but will not feel completely at ease until after the surgery and I know for sure. But I am definitely less anxious now. The waiting during the holiday season was torture.
I am scheduled to meet with the surgeon soon. They are going to do a Flexible Sigmoidscopy exam. I looked it up it does not sound like the most pleasant experience. But if it will give them more information then I am all for it. I hope to get the Surgery date soon. Will keep you posted, and thanks again for all the support on this forum. It really helped get me through the holidays.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Thu Jan 04, 2018 7:29 pm
by Rikimaroo
usually seeing blood in stool it is rectal cancer. Wasn't sure if you mention colon or rectal cancer (I just saw you put sigmoid colon, so its colon cancer). It doesn't sound like you have any metastases with that low CEA. Mine was 26 when originally diagnosed and I had no metastases. Even went up to 32 with no metastases. Now its over 500 and I am sure it will be down since I started chemo.

My doctor saw me on 12/19/2016 and tentatively scheduled surgery for the 1/3/2017. I was stage 3 at the time because of lymph node enlarged. After MRI, Cat Scan and Pet scan they wanted to do neoadjuvant chemo (radiation/chemo pills xeloda).

neoadjuvant is usually used for rectal cancer to shrink tumor so you have good margins to remove and leave some rectum intact, depending where it is located in the rectum.

It's a rough road, chemoradiation is rough. At some point radiation will cause pain when you go to have a bowel movement, but you will get passed it. Use creams and things they tell you to do. Listen to your doctors.

Good luck.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Fri Jan 05, 2018 3:17 am
by ocstacy
Turns out they found a 5 cm tumor.


My mother had the same diagnosis a you from back in May. I was with her when the Dr. gave me the news. Now, she has no cancer as the dr. mentioned it's called "Near Pathological Response" I researched the best colorectal surgeon on the west coast and switched my mom's insurance around to get her the best cancer center. I am happy that I did this because now she has no more cancer and the. saved her rectum and will do a reversal sometime in April. Prayers it doesn't come back and prayers for you to have an easy treatment. The Xeloda wasn't that bad at all, my mom actually gained some weight. She just got that weird rash on her feet and hands. Radiation hurt her rectum towards the end and a few weeks after. Best of luck!

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Fri Jan 12, 2018 5:00 pm
by gmcbrazen
Finally saw the surgeon at MD Anderson, Surgery scheduled at end of month. All my scans and blood work came back clean. The tumor is 6" from rectum, so they will need to cut 4" from my rectum and attach a section of colon that they will remove from the descending colon. They are hoping they I will not need a bag, that will happen only if I leak. I should know before I leave the hospital. But they say I will not be able to eat as much or have a much control over my rectum. Mainly because a colon is not a rectum and I will not have the muscle control. I will need to go the bath room more frequently, and will not be able to hold it as long. Has any one on this site that had part of their rectum removed? Does the colon eventually start acting like a rectum or will I have problems now the rest of my lift. Also I dodge a bullet they don't think chemo will be required but we need to wait until after the surgery to be sure, but they believe radiation is out of the question.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Fri Jan 12, 2018 6:11 pm
by susie0915
My tumor was about 5 inches from anal verge so most of my rectum was removed. I did have a temp bag but it was reversed early when I had a bowel blockage 4 weeks after resection and had to have surgery to remove scar tissue. I then did have to do chemo so made it a little difficult with diarrhea. After chemo, I never had a problem holding my stool but did cluster where I would have many small bowel movements over a period of time. After a about 15 months from surgery I went to a bowel control clinic at University of Michigan. They did do tests and recommended I meet with a dietician and have pelvic floor therapy. The therapy was helpful as they stretch your colon to help you hold more stool. After testing, doctor recommended either taking miralax daily or maybe doing daily enemas to empty lower bowel. I needed to do an enema for one of the tests and did well all day. I now do daily enemas which take about 30 minutes and I'm good until the next morning. I chose doing the enemas as it was on my terms of when I did them. The miralax would probably cause looser stools and I really wouldn't know when it may happen.It has been very freeing. The dietician had me follow a low fodmap diet for a couple weeks. It is pretty restrictive. gluten free, no high fructose corn syrup, lactose free. It did help with figuring out what foods may cause me problems. Some do well with meds and/or diet. Some others just takes time, but it is a process of hit or miss figuring out what will work for you. If you are not having radiation before surgery that is helpful also, as radiation can damage that area as well. You have to give it time before you know where you are at. I am sure you will do fine, but your anatomy will be changed so it is tough to avoid. But many here adjust right away and others take a little more time, but there are many options to help you with whatever situation you are experiencing.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Fri Jan 12, 2018 7:47 pm
by gmcbrazen
Thank you Susie, could you share a little more about removal of scar tissue and why you needed it. The surgeon mention that I may have trouble with scar tissue. What kind of trouble?

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Fri Jan 12, 2018 8:41 pm
by juliej
gmcbrazen wrote:But they say I will not be able to eat as much or have a much control over my rectum. Mainly because a colon is not a rectum and I will not have the muscle control. I will need to go the bath room more frequently, and will not be able to hold it as long. Has any one on this site that had part of their rectum removed? Does the colon eventually start acting like a rectum or will I have problems now the rest of my lift.

It will take some time to adjust to your new "plumbing" :D You will need to test foods and see how you react to them. Certain foods may make you have bowel movements immediately after eating or even cause diarrhea. When that happens go back to a simple diet of white rice, bananas, and applesauce. All of those will slow down bowel movements. After a few weeks try introducing the food again and see if you have a better experience. Avoid Brussels sprouts, cabbage, beans, lentils, onions, and very high-fiber fruits and vegetables for the first several weeks. I couldn't eat raw fruit or salad greens for months, but then gradually my system learned to tolerate them again. Now I can eat almost anything -- although chocolate on a empty stomach still causes diarrhea.

You may also experience "clustering" -- when you have multiple bowel movements in a short period of time. Clustering is tricky to fix. Some relieve it by increasing their fiber, especially oatmeal or Metamucil. Adding fiber/bulk to your diet will stretch your rectum over time to reduce frequency and urgency. It helps the colon act like a rectum. MD Anderson has a "bowel training program" handout they give patients so you might ask for that.

There's one other thing - exercise your sphincter! Strengthening your sphincter and pelvic floor muscles will help prevent incontinence. Tighten and hold your buttock muscles like you’re trying to restrain a bowel movement for five to 10 seconds. Release and rest the same amount of time. Repeat this exercise 10 times at four intervals per day while sitting, standing or walking. Start this now before your surgery and continue it afterwards. It makes a big difference!

Hope this helps!
Juliej

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Sat Jan 13, 2018 8:51 am
by susie0915
gmcbrazen wrote:Thank you Susie, could you share a little more about removal of scar tissue and why you needed it. The surgeon mention that I may have trouble with scar tissue. What kind of trouble?

I had a bowel blockage about 4 weeks after my surgery. I was having pain and nothing was in my bag. I was in the hospital with an ng tube, no food, and walking to see if it would resolve itself. Ended up after about a week of no success the surgeon determined I needed surgery to remove scar tissue that was preventing my bowels from working. He also reversed my ileostomy at that time in order to prevent another abdominal procedure later. The scar tissue could've been caused by my LAR plus the fact I have had a hysterectomy in 2006. I was in the hospital for 3 1/2 weeks. I'm not sure if that is what your surgeon was talking about.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Sat Jan 13, 2018 9:21 am
by jens22
Welcome to the Club. Please Please Please don't put the Cart before the Horse. You will need to have the CAT Scan Results but most of all have the Tumour Removed. Robotic by a Colon rectal surgeon sounds great. You won't know if there is lymph node effected or how far the cancer is in the layer of the colon until then. If you need chemo you can worry about that then. Everyone is different.

Re: 56 went for a colonoscopy they found 5 cm tumor

Posted: Sat Jan 13, 2018 1:36 pm
by O Stoma Mia
gmcbrazen wrote:... The surgeon mention that I may have trouble with scar tissue. What kind of trouble?

Adhesions and blockages
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50321&p=385376#p385376