The Colon Club

I have been recently diagnosed with stage 1 colorectal cancer which was removed in a colonoscopy. Been to two oncologist which one said it was my decision or not to have surgery and the other said if it was him he wouldn't have surgery. My polyp was through to the submucosa and from what I can understand not aggressive. My scans all came back clear...so I am lucky I know this...my follow up scans are scheduled in August...I'm just so scared I made the wrong decision...and am petrified of what could happen...that there are runaway cells floating around just waiting to create havoc!!!! I know I'm lucky in a lot of ways but that doesn't make me any less fearful...I look at my daughter everyday and wonder if I will be here for her in the future and wonder if the decisions I've made and the doctors have made are right

Hi and welcome,

Boy that is a tough one. I would recommend getting a 2nd opinion at major cancer treatment center. See what they say. If you opted for no surgery, maybe come chemo might not be a bad idea.

Was the cancer found in a polyp? If yes, do they feel they got it all?

Lee

What are results on your histology report?
T... = ?
Margins = ?

I had the same situation. It depends on the type of a polyp. My polyp was pedunculated - mushroom type. Haggit level 1, low grade.

I had more than 2 opinions including cancer center. And was told no on surgery. I had 2 cm free margins of any dysplasia or malignancy.

It really depends on the polyp. What does your pathology report say?

This is what the paperwork says....there is a superficially low grade colonic adenocarcinoma arising from a pre existing tubulovillous adenoma. The adenocarcinoma component measures 2.4 x 0.8 mm and infiltrates approximately 0.8 mm into the submucosa. No lymphatic invasion but early epithelial budding. The adenoma is present at the mucosal margins.invasive tumor noted 2.2 mm from the cauterized margins.

Thanks for any help

Also this is what the oncologist said at cancer center T1 lesion with a 2.2 mm negative margin..early tumor budding..no other negative features..a low grade lesion 2.4 mm at its widest diameter

Trig, surgery (especially one with complications) is not a pleasant thing.
Nothing is free in our world and you need to carefully review all pros and cons.

In my case surgery recommendation was approved by a "Review board".
Can you get a 3rd and 4th opinion and estimate probability of recurrence with and without surgery?

I was also for surgery but sometimes I wonder whether this was a right decision.
It looks like in your case risk is lower than in my case.
So not having a surgery and having frequent scans in the next five years may be a good option for you.

Game of chance with your own life is rather exciting.

I had the surgery. I was also stage 1 and the choice was mine. Am I glad for the surgery? It's a pain at times- even a year out. But I sleep better knowing the area is completely clear of cancer. In my personal situation, the anxiety would have been too high to not have surgery as I live overseas without good medical care. If I lived close by and was guaranteed frequent check ups, maybe I would have chosen differently. What will your insurance company allow if you don't do surgery? How often can you get a colonoscopy or blood work testing? Can you sleep at night without worrying?

It is a very difficult decision. My polyp was huge. 2 cm stalk and 3.5 cm diameter of the head. The cancer was 0.6 cm on the top of the head. Stalk completely clear of dysplasia or cancer.

Your cancer was really small. What cancer center did you go to? What did they recommended? Based on NCCN it depends on type of polyp. Pedunculated low risk is treated by just polypectomy. Sessil low risk is optional polypectomy or surgery and any polyp with high risk is surgery.

From what I have read location rectal is more risky. For pedunculated polyp in colon local reoccurrence is very low - like 2%. But sessil in rectum is much higher like 10%.

Do you know the location and type of the polyp? I ended up going with my cancer center recommendation. It is hard but I just have to move on and hope for the best.

I'll try giving you a low tech answer..... If you are already scheduled to back in August for follow up, try to relax and enjoy the summer and wait to see what the follow up shows.

Non aggressive CRC can take years to develop, so I think taking a few months to relax (easy to say, i know),think over some options, and see what shows up (or doesnt show up) may be a good option.

And, for the record, I wouldn't argue with you if you opted for surgery.....Peace of Mind can be a tremendous thing.

Best,
Rob

CatzinDJ wrote:Am I glad for the surgery? It's a pain at times- even a year out. But I sleep better knowing the area is completely clear of cancer.

You can't be sure that the area is completely clear of cancer.

Cancer may have already spread to other lymph nodes (that have not been removed during surgery) and other organs.
Only after 5 years of regular scans (that are required for cancer cells to grow to detectable size) you can be relatively sure that you are free of cancer.

Yes, that's truth. Based on my understanding if you have resection and clear lymph nodes than it's like 1-2% that your cancer has spread by blood. Never anything for sure. With my polyp I was told chances less than 1% it's in the lymph node. One surgeon from Baylor said 3-6%. So once again... hard decision. Just hoping for the best.

How about rad/chemo combined, I am stage 1, my surgeon treated it that it was much higher level, my radiologist wasnt trilled with dessiccion of chemo/rad, my oncologist was ok with that, any way I had chemo/rad, and cancer was gonne, was reffered to second surgeon, he said no need for surgery, my first surgeon still wanted me to have mop-chemo, my oncologist agreed, so thats where I am now, and hopefully this will be my last treatment.

With cancers its like gambling, what works on one, might not work on another, but more is better.
While back I did a lots of research, and found that 75% of cancers that were treated only surgically, no chemo, came back within 2 years, it was some european study, cant find it again.

Good Luck!

Hi Trig,
I was diagnosed with Stage 1 rectal adenocarcinoma 2 years ago. Mine was sessile and located via colonoscopy. Too large/tricky for the GI to remove but the biopsy he did take showed it as benign. Three months later it was removed by endoscopic mucosal resection by an EMR specialist and found to be malignant. Referred to a colorectal surgeon who gave me 2 options: watch and wait (no mention of any mop up chemo ) or ultra low anterior resection as it was very low, with possibility of APR and permanent colostomy if ULAR not possible (he would only know which once he got in there). I agonized over the decision but finally went with the surgery.
Outcome? I have LARS, see him every 3 months (which would have been the schedule for watch and wait anyhow), and am seriously considering having a permanent colostomy (i had the ULAR with temporary loop ileostomy which gave me no problems hence my willingness to have the colonoscopy).
So in hindsight what would i have chosen? If my polyp was pedunculated and already removed and classed as low grade i would ask for 3 months mop up chemo followed by a strict watch and wait protocol that included 6 monthly scans and 12 monthly colonoscopy. CEA as well each 3 months if it was an indicator for you (i have one every 3 months but it all seems futile to me because it was never elevated in the first place).
Only you can make this decision and I understand how much it does your head in. I ended up having panic attacks and needed meds to get through that preop period.
Whatever your decision we are here to support you through the process.
(((Hugs)))

It’s a quite complicated decision, and anxiety is the obvious thing. There is always some risk association and i wish you smooth recovery and hope you decide what’s better to go with.