New to forum

[Mark Nelson]

Hi - I'm Mark Nelson and new to this forum. I was recently diagnosed with colon cancer. I have a T2 to borderline T3 tumor that is at the end of my colon. My doctor says a little of the tumor is in my sphincter muscle. So he thinks the best route is to take the muscle out and leave me with a permanent bag.

I have struggled with that. Keep hoping that when they do surgery they will see something that makes them believe they can do a reconstructive surgery so I don't have a permanent bag.

My surgery is Monday June 13th. Of course very nervous. Before I found this forum I started writing about my journey on my blog (http://www.MarkNelsonsBlog.com). More for me to get things off my chest and thinking maybe I could help someone by them reading about my journey through this.

Blessings to you all,

Mark

[weisssoccermom]

Mark,
I certainly have some concerns based on what you have said.

1. It sounds like you have been classified as having rectal cancer.
2. It also sounds, based on what you have written, that you've probably gone through the standard rectal cancer testings - at least you've had the rectal ultrasound that has helped the doctors determine that you have a T2/T3 tumor.
3. My biggest concern is that it doesn't sound like you have been offered the standard - chemoradiation prior to surgery to shrink the tumor.
4. Is the surgeon you are seeing a board certified colorectal specialist? I ask because too many general surgeons will tell you that they can perform the surgery (they can) but....in your pelvic region you seriously want a BOARD CERTIFIED COLORECTAL SURGEON not just a board certified general surgeon.

You can't PM me because you don't have enough posts. However, I believe you can receive PMs. I will try to PM you some information in a little while.

Meanwhile, check your surgeon out at this website and get a second opinion. There is NO RUSH RUSH RUSH to this. Taking the time to get a second opinion could very well make the difference between a permanent/temporary colostomy.

http://www.abcrs.org/cgi-bin/search.pl

Jaynee

[emzee]

Hi Mark, I've just joined as well since there are no local support groups specifically for colorectal cancer in my immediate area. I have been a frequent "guest" but finally decided that I've learned a lot from the folks here since my diagnosis and thought it high time that I join the conversation. I couldn't agree with weissoccermom more! You must get a second opinion before you undergo surgery on Monday. I was diagnosed with borderline rectal/colon cancer in November '10. I chose the best oncologist and board-certified colorectal surgeon I could find. My tumor was a T3. I had adjuvant therapy or a chemo/radiation combo treatment for six weeks starting 12/1/10. I had surgery on 3/8/11. I was given a temporary ileostomy which we'll reverse at some point in the near future. My pathology showed T3N1M0, which means that I had one positive lymph node and am now in the FOLFOX chemo treatment of 12 oxaliplatin/leucovorin infusions, followed by a 48 hour 5FU continuous drip. I had my 5th infusion yesterday and walking around w/my "to go" pump until tomorrow morning.

The lastest standard for your treatment course since it seems very similar to mine is the pre-surgical treatment to shrink the tumor and prevent spread. Please seek out the opinion of a colorectal surgeon who is board-certified and treats a lot of cancer patients. There's a chance you may only need a temporary ostomy. In the event you do need to live with a permanent one, I can tell you that after the initial awkwardness and shock wears off, you often get a quality of life back that you don't have now. But, more importantly, seek that second opinion and I hope that whatever decision you make, you feel free to share here. I wish I had joined sooner!

[CaliforniaBagMan]

I'm also not understanding why the direct route to surgery without other treatments.

The cancer you have has probably developed very slowly over a number of years. At first diagnosis, your reaction is probably to want it "outta there" immediately, which is probably how we all reacted. But, as many of us learn, there is time, ample time, to investigate and plan the proper treatment approach. This is a very serious disease and appropriate time is warranted to ensure you are pursuing everything possible for a cure.

[Tom47]

Mark,
Hang on it’s a hell of a ride, I’m still holding on. I’m recovering from a low anterior resection I had two weeks ago. I was extremely nervous before. I was marked for both permanent ostomy and temporary ostomy. Luckily I needed neither. My tumor was T2 after the ultrasound and changed to T3 after the second surgery. I guess mine was far enough away from the anal and he said the remaining portion of my rectum was in good shape so I did not need temporary diversion. Two board certified surgeons did my surgery. I went to another board certified surgeon for a second opinion which my surgeon set up and encouraged me to get. The second opinion surgeon said he agreed 120%. I was still nervous but glad another surgeon agreed this was the right procedure. Hang in there I know it tough and just know what ever you decide is the right choice for you.
Good Luck
Tom

[Mark Nelson]

CEA = .9
T2, N0, anorectal cancer arising at the superior portion of the internal anal sphincter and extending for just over 1.5 cm proximally and encompassing less than 20% of the circumference.

Most of the tumor appeared to be superficial. No findings of a T3 lesion and surrounding lymph nodes.

[so-scared]

I am new here also. I agree with the others as far as consulting with a board certified colorectal surgeon. My husband was recently diagnosed with rectal cancer. His tumor is quite large - 10 x 4 x 3 cm and is circumferential so it takes up most of his rectum. It is very near the sphincter muscle. He is starting radiation and chemo on Monday to shrink the tumor so they can save the sphincter muscle. The surgeon believes that he will have a temporary bag for three months and then he will have it reversed. Surgery in the pelvis is different than colon surgery. It is much more difficult and that is why a surgeon that specializes in this is a must for us. The surgeon said it is like performing surgery in a tea cup - not a lot of room and a lot of important stuff down there. From what I understand having the rad/chemo before surgery also greatly reduces the chance of reoccurance in that area and if it reoccurs it is much harder to treat.

[SkiFletch]

Welcome Mark. That's definitely tricky with the whole location you have there. Can they even radiate with it being so close to the sphincter muscle, or do they risk damaging the muscle too much to make it not worth your while really? I'd definitely ask your doc about chemo/rad first. Although the size in that description is pretty small. Tricky spot your in man. I just wanted to say welcome, and say some prayers and swing some chickens for a good outcome for you

[thelongglass]

I add my welcome and support to those who posted before. As you can see in my signature, I started all of this less than six months ago. My rectal tumor was in the upper third, so not the same situation here, but if I were you, I would get on the phone and talk to your oncologist first thing tomorrow. SkiFletch might have a point about the quality of the sphincter post-radiation, but you should definitely ask your doctor why you wouldn't do the apparently standard neo-adjuvant (pre-surgery) chemo-radiation. My 5 cm tumor, 50% circumference, disappeared before surgery because of the early treatment and the new guidelines to wait 8 weeks post-radiation for the cancer to shrink before surgery. It makes a difference on recurrence and survival rates, not to mention the possibility of preserving bowel function.

Also if you are lucky enough to have a colorectal specialist in your area, think about setting up an appointment with them. It is terrible timing to tell you to re-evaluate in one day what you have planned, but I think that over the phone you should be able to discuss your specific case with, if not the CR surgeon him/herself, the nurse who assists or the surgeon's scheduler. They are very familiar with similar cases and should be able to help you in this time crunch decide whether to hold off on the surgery to get a second opinion. I didn't see if you confirmed whether your surgery is with a general surgeon or a colorectal specialist, but after seeing one general surgeon and three colorectal surgeons, I can tell you that you'll fare better with a CR surgeon who does 50 surgeries like yours a year than with a general surgeon who does 3-5 a year. My general surgeon came right out and told me that I shouldn't have a GS do the surgery, and that although she is great at what she does, she wouldn't have the same experience of how to deftly manipulate the colon/rectum in that deepest and darkest area of the body and leave me with the best possible bowel function. I really appreciated her candor. My oncologist sadly did not seem to recognize the small but significant differences in surgeons. She even told me to go next to a CR specialist who I came to find out had lost all of his hospital privileges due to sloppy work and multiple lawsuits. So I decided to look for a surgeon myself and was in the end very pleased and confident with my choice. The extra time during radiation gave me the opportunity to look around, though. Don't know if any of this is helpful or just redundant from what everyone else has said, but I am hoping for the very best for you today and next week, whatever the outcome. A bag is surprisingly not as bad as I assumed it would be. It was very hard for me to consider a permanent colostomy before I got to a CRsurgeon who told me that I would only need a temporary for 6 months, but my life is really very normal now and I am active and have had very few problems with it. Hang in there. This is a great forum with great, helpful people with what I have found to be reliable information.

[thelongglass]

Looked at your blog and looks like you are getting great care at Mayo. I am ignorant in regards to care in other regions, but I guess I expect lot from the Mayo brand.

[Deb1957]

Hi Mark,

When I had my surgery in January my surgeon did not know if I would awake to a permanent or temporary bag. He wanted me to have the radation before the surgery to shink the mass which would give him more to work with. Radation shank the mass to scar tissue and I now have a temporary bag.

These were the findings from my ultrasound: There is a mass in the right anterior wall of the rectum beginning approx 2 cm above the level of the puborectalis. The mass extends from the 10:00 to 12:00 position. This mass measures 3.4 cm in logitudinnal length x 2.2 cm in transverse diameter x 1 cm in thickness. The mass appears to extend to the muscularis propria and theres is also nodularity on the outer contour of the muscularis propria suggesting that it extends through the muscularis and into the surrounding fat. Thus, this is considered T3. No enlarged lymph nodes are noted.

I agree with others do not rush into this. My surgeon only does colon and rectal surgery and has been doing it for over 30 years. Reach for the best Mark.

The very best to you. Keep us posted and keep the faith.
Debbie

[Mark Nelson]

Thanks to everyone who responded to me.

I did search out other opinions. Sent my reports to the U of M and also Abbot Northwestern. Asked them if a transanal endoscopic microsurgery was possible. U of M said no and I am still waiting for Abbot Northwestern.

I met with my Dr. Friday at Mayo. He is board certified and has been doing this for 18 years. He said the surgery he is planning is the best option for being cancer free. My tumor is in my sphincter muscle which is a bummer.

We also met with the stoma nurse. Surgery is still on for Monday and I'm comfortable with that.

We're saying lots of prayers and asking for guidance.

Love you all!

Peace out.

Mark

[so-scared]

I did not realize that you were going to Mayo at first. You are in good hands. I will be praying for a smooth and speedy recovery for you!!!

So-s

[chrissyrice]

Praying for a good outcome on your surgery tomorrow. Keeping your family in my prayers too.
Let us know how it turns out.

Chrisssy

[Tom47]

Good, I was worried about you but I am so happy you are comfortable with you decision. I will be praying for success and fast recovery!