I need help deciding treatment after surgery!! THIS isn't Easy!!

[CharlesT]

Hi, I went in for my first colonoscopy at 45 years old feeling great. Dr found a tumor on the lower section of my colon the size of a strawberry. MRI of the pelvis revealing a T1/2, N0 rectal cancer. On 11/16/18 I had resection surgery that went well, 6 hr procedure LAR, I was home 2 days later and recovered very well. I have a temp ostomy bag that is working well just little sore from skin irritaion that I'm working on. The Pathology report came back with good and bad news. It showed something slightly different. Microscopically the Tumor had penetrated the colon wall therefore classifying it as a pT3. My report reads pT3, 0/18 LN involved, Negative margins, -PNI, -LVI. Radial Margin 2.9 cm clear.
Here is the question that I'm faced with. The Dr told me because it is classified as a T3 now, even though the penetration through the wall was microsopic. They are recommending 5 1/2 weeks of radiation and 5 month Chemo. He also told me based on my current results I'm 85% cancer free, if I add the radiation it will increase my odds 3% and if we add the Chemo another 3%. So best case 91%. Im having a hard time committing to 5-6 months of treatment for 6% increase in odds. With clean margins and 0 LN and 2.9 Cm radius clear I feel like id be blasting my body to treat something that we don't even
know is there? Don't get me wrong if I was at 60% and the treatments would get me to 85% I wouldn't even hesitate. Just reading the blogs and researching the side effects of Chemo and Radiation I'm not sure the 3 to 6% increase in odds out weighs the possible side effects of the treatments? The radiation down in the pelvic area has a lot of side effects because there is so much down there in such a confined area. So Im considering just the Chemo but then again to put my body through 5-6 months of chemo to add 3% seems crazy. Don't take me wrong, Im very thankful to be in the situation I'm in at 85% and probably cancer free. Im just trying to do the smartest thing for my body and the next 6 months of my life. If I do take treatments it will also prolong the temp ostomy bag until 6 weeks after all treatments are done, so instead of 3-4 months id be wearing it for 7-8 months?
Does anyone have any advice or similar situation. Id appreciate any feed back. Thanks in advance!

[MCK]

CharlesT I think you are smart to really consider the best option for you. Not sure if I understood your post right, many acronyms are new to me, but am I correct there is microscopic cancer in tissue? or they aren't sure if there is cancer in tissue?

[peanut_8]

Hi Charles,
Welcome to Colon Talk.

Just wanted to clarify something you mentioned about being 85% cancer free. At this point it sounds like you are NED (a really good thing), which indicated no evidence of disease. The 85% comes into play for your 5 year survival rate. Here's a link if you're interested. https://www.cancer.org/cancer/colon-rec ... rates.html
Seems like the rates change over time, and are a general guideline. According to this particular source, you have an 81% chance of being disease free after 5 years.

I was in a somewhat similar situation to you. I had chemo/rad after surgery, followed by 8 rounds of Xeloda. Just my opinion, butt I'd skip the chemo/rad portion, and do 8 rounds of Xeloda, a pill, so no intravenous stuff. You will most likely have side-effects, butt they can be managed, whereas radiation damage can be permanent. It's hard on your hip joints and other things, especially for us gals.

Keep in mind, that I'm not a dr, and this is just my opinion. If you have other questions please feel free to ask here in this thread, or start another.

Best Wishes,
peanut

[CharlesT]

CharlesT I think you are smart to really consider the best option for you. Not sure if I understood your post right, many acronyms are new to me, but am I correct there is microscopic cancer in tissue? or they aren't sure if there is cancer in tissue?

The section of my Colon was removed with the cancer tumor inside it. The Tumor penetrated through the colon wall microscopically which changed the staging to a 3. As far as we know there is no evidence of cancer at this time and the treatments will be preventative, just incase a cancer cell leaked out of the microscopic side hole of my tumor.

[rp1954]

I don't normally comment on rectal cancer because even an inch away there are biological differences and, usually, radiation upfront for RC. In the US you will likely have three choices, radiation and chemo, Xeloda alone, or Folfox alone.

Since you didn't have prior radiation, you should be aware of this paper, Matsumoto 2002, and 15+ years research surrounding it.

Basically for a majority of stage II and stage III rectal and colon cancer patients, those with cancer tissues stained by both CSLEX1 and CA199 antibodies, their odds were improved more than the 6% being offered you, by taking mild daily chemo treatment for a year, oral 5FU + 800 mg cimetidine. In the original paper, true 5FU was used, but in Japan, the nicer oral 5FU prodrug UFT, available in Taiwan, Korea, Japan and India, mostly replaced oral 5FU by the 1990-2000. CSLEX1 is not commercially available in the US, but the CA199 covers 80-90% of that part of the odds.

Essentially, some important parts of what we have done, were to get blood measurements of CEA, CA199, LDH, hsCRP, 25 hydroxy-vitamin D, make a decision on the first months of chemo, then get the pathology tissue CA199 stained. We modified the odds based on more tests targeted with somewhat different but nicer chemistry, like oral chemo (UFT for 5FU), cimetidine and in our case, lots of vitamin D3 for the common deficiency associated with colorectal cancer. In the US, Xeloda is the closest drug but we prefer UFT (the brand name, or generics) from Asia.

We've been able to order the blood tests for ourselves, in several countries including the US. After the blood CA199 was high enough to be relevant, I got a tissue based CA199 stain, too. We've had good results for positive CA199+CSLEX1 without the usual treatment damage. It's mild enough we were able to use (immune)chemo a day after a successful surgery for para-aortic lymph nodes, with extra wound healing nutrients. Immuno- here reflects several aspects, including daily ("metronomic")) mild chemo, targeted cimetidine, PSK and vitamin D3.

[susie0915]

I did the chemo radiation before surgery. It worked well, as the surgeon did a sigmoidoscopy before surgery and said only scar tissue remained, so may not need chemo after surgery. The pathology showed clear margins, 0/24 lymph nodes, but minimal residual cancer cells. Chemo was recommended. My oncologist recommended 7 rounds of Xelox (combination of oxi infusion and xeloda pills). I was very disappointed, but she said even though I am cancer free she could not guarantee no cells got into the blood stream. Don't want to wonder "what if" if there is a recurrence and I didn't do chemo. I ended up doing 6 rounds of chemo as my son was getting married and I asked if I could delay or stop before the last round so I could travel and have a month off chemo. She said she was totally fine with me just stopping at 6 round. The chemo was not horrible. I did have diarrhea issues as my ileo was reversed 5 weeks after my resection due to a bowel obstruction. That made it more difficult I think. I did the infusions every 3 weeks, started the pills for 2 weeks, and then had a week off before starting again. It is a tough decision, I know but is totally doable.

[WriterGirl1969]

Hi CharlesT. I think it's great that you're doing research on your choices prior to making them. It looks as if you've already gotten some great information from the others, so I won't repeat any of that. What I will say is this - I also did a lot of research before making my decisions, and although I ended up having to fight with my oncologist a bit, ultimately I'm really glad that I did. When push comes to shove, this is our lives we're dealing with. Thankfully there is a ton of information here to help. Personally, I wouldn't discount some kind of follow-up treatment. Remember that although a number of nodes are harvested, they're only an indicator. I was also T3 (although I was N1) and so recommended mop-up chemo, although I'm colo vs. rectal so no radiation. I opted for oral Xeloda, and was fortunate to do pretty well during treatment. I'm fairly confident that now -- a couple years out -- I see some impact to my body, but it's hard to say for certain that this is from the chemo. Still, if treatment gave me even 6% better chance of not having a recurrence, I'll take it. Not sure if any of that is helpful, but take it as you will. Best of luck, and don't be afraid to stand up for your decisions once you make them. We truly have to be our own advocates.

Smiles, hugs and prayers,
Tracy

[KathyLynn]

I also had a situation where I wasn’t sure what to do. But mine was ITC that was found
I would suggest a second opinion. Some hospitals will only do standard treatment.

KathyLynn

[mpbser]

Ditto what writergirl said