rectal cancer woes

NIMAH

Greetings, i am new to this site. I was diagnosed 9 months ago with T1 RC. Tumore removed..clear margins..no therapy..Now I have a reoccurance...tumor removed..about to start chemo and radiation...this seems to be steam rolling, how such small T1 lesion has become such a huge thing...confused, scared and really POed. Just looking for someone who has been there..Thanks

Patrusha

I had a T3 tumor removed a few months ago and am doing chemo for a spell as I was diagnosed Stage II CC. Don't be discouraged, nimah. I think all of us in this "game" have to hope for the best but expect some setbacks. It's the only way I can stay sane.

So they got the tumor -- again -- and that's good. Did they find any evidence of anything in any lymph nodes either time?

Now you're taking a more aggressive approach and that's all good. The confusion, fear and general PO feelings are understandable.

Hang in there with us. We'll help you get through.

lfondots63

Hi Nimah,

I'm glad you found us but sad to add another to our growing numbers. I'm Stage 3 and was dx the day before my birthday. I actually had the tumor out on my birthday (Dec 20th 2005). When they had me down in OR someone read my chart and they all wished me a happy birthday right before I went in for the removal. Needless to say I bawled. LOL. I sure won't forget the day I had it out. All you are feeling is normal. How did they find the second tumor? I'm asking only because I found out last month that they never got to finish the colonoscopy that found my tumor. Did your docs complete a colonoscopy all the way around? My tumor was found in the sigmoid (ascending) part of the colon. I just had a total colonoscopy and no polyps were found so maybe the second tumor was another polyp? HUGS and we are all here for you.

Lisa F.

NIMAH

Thanks for you replys..some histroy....The T1 was removed transanally and margins were clear...did no treatment..then the reoccuarance...same operation and with this procedure there is no way to get at lymph...last tumor was small, but margins got fried in removal..so ...no one knows..my onc says lets not mess around..surgeon tell me the site is so close to anal verge i will probably lose that function and have a colostomy in future...one step at a time...about to start 5FU with radiation...chemo will be continous infusion...still learning about all this...but i know i have a better chance than most since we caught both early...I am male, 50, good health, vegetarian, exercise, out going, educator looking forward to retirement with my supportive wife.. good Drs. in Atlanta area....

vinny3

Welcome-I hate to say that because it means someone else has met the beast.
My situation is somewhat similar to yours although my rectal tumor was graded at a deep T2 when I was diagnosed in April, 2005. I had chemoradiation at that time as it seems you are going to have. About 2 months after finishing that I had a transanal incision. The pathology report at that time showed only scar tissue. However 8 months later I had a rectal ultrasound which showed a recurrance in the same area. With that I had an abdominal/perineal and have a permanent colostomy. In looking back I probably wasn't a good candidate for the original transanal excision as my tumor took up about 40-45 % of the circumference of the wall and it shouldn't take up more than 30%. However my surgeon thought that too often the treatment is too harsh and I think he wanted to "spare me" (I am also a physician and have referred to this surgeon for about 30+ years). At my big surgery the nodes were negative but the oncologists I consulted with said they really didn't know what stage I am at due to the chemoradiation prior to the first surgery. Thus I am doing chemotherapy at this time to lessen the odds of recurrance.

Looking back now if I had it to do over again I would have pressed for the full resection and colostomy for the first operation. Several surgeons advised me to do that but I went with what I wanted to believe and found some articles that gave me hope that the smaller surgery would do it. The colostomy is not that big a deal. It looks funny but is manageable. In some respects it is easier as I had had problems in the past sometimes with needing to find a bathroom urgently and that no longer is a problem. The colostomy might be more of a problem if I were dating but I have been married for 40 years and that is not an issue although I think most would accept it.

You are doing the right thing in doing the chemoradiation now. Be sure that you are followed closely after with the rectal ultrasound and CT scans.

I'm sorry this is so long. Feel free to ask more questions.
****

taraHK

Welcome to this site, altho I am sorry you have cause to be here. My situation is different from yours in that I was diagnosed with Stage III rectal. I had chemoradiation followed by surgery followed by more chemo. Because I my tumor was so low, I had APR (with permanent colostomy) right away. Two years later, I had a recurrence - in the lung. More surgery, more chemo. I am NED now. So, a different tale. But, I wanted to let you know that, if you do have to have a colostomy, in my experience, it ain't that bad. A psychological adjustment, but I find it has had little to no impact on my life. Secondly, maybe the chemo is a good idea -- wipe out any of those nasty micrometastises that might still be lurking. Finally -- there is life after recurrence! It's a horrible shock - very scary. But, I found I just had to jump back on that horse, and do it again. Today, I am feeling great -- working full-time, exercising, socializing...Best of luck to you.

NIMAH

vinny3 said:

Welcome-I hate to say that because it means someone else has met the beast.
My situation is somewhat similar to yours although my rectal tumor was graded at a deep T2 when I was diagnosed in April, 2005. I had chemoradiation at that time as it seems you are going to have. About 2 months after finishing that I had a transanal incision. The pathology report at that time showed only scar tissue. However 8 months later I had a rectal ultrasound which showed a recurrance in the same area. With that I had an abdominal/perineal and have a permanent colostomy. In looking back I probably wasn't a good candidate for the original transanal excision as my tumor took up about 40-45 % of the circumference of the wall and it shouldn't take up more than 30%. However my surgeon thought that too often the treatment is too harsh and I think he wanted to "spare me" (I am also a physician and have referred to this surgeon for about 30+ years). At my big surgery the nodes were negative but the oncologists I consulted with said they really didn't know what stage I am at due to the chemoradiation prior to the first surgery. Thus I am doing chemotherapy at this time to lessen the odds of recurrance.

Looking back now if I had it to do over again I would have pressed for the full resection and colostomy for the first operation. Several surgeons advised me to do that but I went with what I wanted to believe and found some articles that gave me hope that the smaller surgery would do it. The colostomy is not that big a deal. It looks funny but is manageable. In some respects it is easier as I had had problems in the past sometimes with needing to find a bathroom urgently and that no longer is a problem. The colostomy might be more of a problem if I were dating but I have been married for 40 years and that is not an issue although I think most would accept it.

You are doing the right thing in doing the chemoradiation now. Be sure that you are followed closely after with the rectal ultrasound and CT scans.

I'm sorry this is so long. Feel free to ask more questions.
****

Vinny3,
Thanks....sounds as if you have been down the road ahead of me. I am about to leave and go see my surgeon to see if I have healed enough to begin treatments. Surgeon keeps telling me I will have a colostomy...I am having natural reactions to that idea, but research and people like you are helping. I also go to onc. today to begin "chemo training." What do you know about continous infusion?? How is you chemo going? I have studied all the side effects and I realize it is different for each of us. Thanks for sharing and please keep in touch...I'll drop another thread later today with news from both drs. I am a high school media specialist and research is my thing, so maybe I have over done it....got lots of hard questions for both drs. today...good luck and thanks again...Keith

NIMAH

taraHK said:

Welcome to this site, altho I am sorry you have cause to be here. My situation is different from yours in that I was diagnosed with Stage III rectal. I had chemoradiation followed by surgery followed by more chemo. Because I my tumor was so low, I had APR (with permanent colostomy) right away. Two years later, I had a recurrence - in the lung. More surgery, more chemo. I am NED now. So, a different tale. But, I wanted to let you know that, if you do have to have a colostomy, in my experience, it ain't that bad. A psychological adjustment, but I find it has had little to no impact on my life. Secondly, maybe the chemo is a good idea -- wipe out any of those nasty micrometastises that might still be lurking. Finally -- there is life after recurrence! It's a horrible shock - very scary. But, I found I just had to jump back on that horse, and do it again. Today, I am feeling great -- working full-time, exercising, socializing...Best of luck to you.

TaraHK, Thanks....read the response to Vinny....short on time...gotta drive to Atlanta to see drs....Good luck and thanks for sharing...i got the horse in the corral, but getting the saddle on is hell, one day at a time....Keith

taraHK

NIMAH said:

TaraHK, Thanks....read the response to Vinny....short on time...gotta drive to Atlanta to see drs....Good luck and thanks for sharing...i got the horse in the corral, but getting the saddle on is hell, one day at a time....Keith

Keith,
Hope your meetings went very well. I understand there are some terrific drs in Atlanta. "Hard questions" for docs is a GOOD thing. The best ones love 'em. I'm a university teacher, so I"m on that obsessive/research/question end of things. I loved your reference to getting the saddle. Yes, it is hell -- you are right. But we can do it. Pls keep us posted on your situation -- and feel free to email me anytime (click on envelope logo under my name). I don't check every day but I will check. Best wishes, Tara

ps for my first chemo, I had 5FU. For my second time 'round, I had FOLFOX. The folfox involved continuous infusion. In my case, this was administered in hospital (48 hrs, every other week) but in many other places it is outpatient -- fanny pack. Happy to address any specific question about colostomy and/or chemo once you know about your specifics

KathiM

Hi! Stage III, squamous cell carcinoma tumor in the first rectal fold....pre-surgical radiation/chemo, removal of rectum and sigmoid colon...NO colostomy....surgeon specializes in low resections...
Yes, it is a fight. But, I am now NED....

I had a 4-day continuous infusion on the 5FU...and daily trips to the center to infuse carboplatin as well....

WATER WATER WATER WATER WATER!!!

Cold will probably not work, but it did for me (I ALWAYS have to be the odd one!!!!). I would sip on something all the time...
Also, ask about anti-nausea drugs at the FIRST SIGN....you can't afford to lose weight during the treatment (I lost 30 pounds).

Turn your anger toward the beast....it HATES that. Also, I found something EVERY DAY to laugh about...even after being diagnosed 3 months later with breast cancer....
Hugs, Kathi