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27yo Unsure About Stage

TreadLightly90
Posts: 7
Joined: Sep 2017

Hi.

I went in recently for a colonoscopy and got a wishy washy report back from the doctor regarding one of the polyps they removed. What he told me is that one polyp was cancerous, but the removal was complete...but one in my rectum was concerning and he referred me to a surgeon to "check for leftover cells."

He also said that an option for the surgeon would be to do nothing, so...does this mean that this was a stage 0 but he just wanted to make sure, or was this a really roundabout way of teling me this is stage 1?

He did say this was caught very early.

I don't have a copy of the pathology report but I have reached out to my doctor's office via email and am waiting a reply. In the meantime, for my anxiety, I just wanted a possible opinion on this? I'm scared it moved to something, my pelvis in particular, but he did say this kind of cancer is very slow growing, so this might just be in my mind?

Thank you ahead of time.

NHMike
Posts: 214
Joined: Jul 2017

My assumption would be that he or she was suggesting a surgeon to order an MRI and then look over the MRI to see if there has been any invasion. At least that's what my surgeon did (besides the fact that she's going to do my surgery). Perhaps you could talk to your GI guy to get some clarification. It would seem that this would be faster and easier than contacting a surgeon. So you need to ask your GI guy some questions at a minimum.

TreadLightly90
Posts: 7
Joined: Sep 2017

Thank you, Mike

I just got off the phone with the GI office, and this is what they told me:

A tubular adenoma fragment was taken out of my colon, but there was no cause for concern since it was just precancerous.

The biopsy in my rectum, though, was a cancer carcinoid that has invaded the muscularis mucosa. They said that they could not confirm the stage for me, but they did refer me over to a surgeon to talk about this on Thursday. I guess this might mean a stage I, given what I have seen online?

Now I'm very worried that this thing growing in me is bigger than I suspect. It makes me quite nauseous to even think about it...not sure how to get through two more days of work like this.

Again, though, thank you for your quick response.

NHMike
Posts: 214
Joined: Jul 2017

I was ilkely stage 3A when I first saw my surgeon. I had an MRI a few weeks later and it had invaded a muscle (levatar or something like that) and that made it 3B. You have to go to that big flowchart to figure out the staging and you need all of those letters and numbers. Stage three means that it has spread to nearby lymph nodes which doesn't seem to be the case with you. So, in my unprofessional assessment, you're below III. I haven't spent a lot of time reading about I or II as I'm a III. If it's in the muscle, though, then the surgeon would have to remove it, perhaps after shrinking by either chemo or radiation.

I know how you feel as I went through it. There are a lot of folks that have gone through this and worse and we can certainly try to answer your questions.

TreadLightly90
Posts: 7
Joined: Sep 2017

Before anything else, Mike, I'm sorry to hear about how you're doing and I hope you're on the track to getting better!

When it comes to the layering, I looked at an infographic on layers and found this: http://www.histology.leeds.ac.uk/digestive/GI_layers.php

Apparently, this isn't incredibly deep down, and when they say "invade," it might just be that it about touched the layer but didn't penetrate it (maybe?). The chart basically says it's still in the mucus layer, and other infographics pin it down as a pretty thin layer, at that. I assume this might have just been big enough for the gastroentonologist to feel uncomfortable removing the whole thing during the colonoscopy, so he's referring me to a surgeon? 

One thing I forgot to add: this polyp - that turned out to be a carcinoid - was 5mm at the time of biopsy. I'm unsure what that would say about tumor size, if anything, but I guess that the surgeon would eventually have the final say in everything, wouldn't they? I just keep telling myself the tumor must not be that big if the polyp was so small.

I will say one thing: the fact that you said it doesn't seem to have spread to lymph nodes, given the information I provided, is incredibly uplifting. I really can't thank you enough!

NHMike
Posts: 214
Joined: Jul 2017

I've more or less made my peace in what I'll lose since it's been two months but thanks for the concern.

The surgeon told me that there are margins in the muscle. If it invades too far, then I will lose functionality. If it's 1 mm, then she may be able to save functionality. I am personally not optimistic but I'll find out after the MRI if it's invaded too far. If it hasn't then, she would make the final determination when she gets in to remove the tumor.

5 mm is pretty small. Mine was 5 cm x 4 cm by 1 cm. I've read of people with 10 cm tumors. So yours should be far easier to deal with overall.

I think that the tumor would be part of the polyp so the overall tumor would be smaller. You should talk to the surgeon as you need someone running point. For me, it was my GI guy who passed things off to the Oncologist and Radiation Oncologist. I assume that they will pass point off to the surgeon. I don't know that you'd need an oncologist on your team unless your surgeon thinks that you'll need Chemo. BTW, I would recommend a colorectal specialist for a surgeon. There are generalist surgeons and specialists and the specialists do the vast majority of their work in your area and likely are better acquainted with the nuances of their surgical specialty along with current research and advanced techniques. Even better if they are a colorectal cancer specialist. We didn't have anyone like that in my state so I went with someone from Dana Farber Cancer Institute. I also got second opinions in oncology and radiology from Dana Farber. They agreed with the treatment plan that the local oncologist and radiologist put together.

The quality of care can matter quite a bit depending on the expertise level of your doctors and their teams. Something to consider.

 On lymph node spread - that was determined by an MRI. So your surgeon might want an MRI to verify that there's no spread. I wouldn't think that there would be given the size but I'm not a doctor.

 

TreadLightly90
Posts: 7
Joined: Sep 2017

Thank you again, Mike!

The surgeon my GI doctor referred me to the Colon & Rectal Clinic of Wisconsin, with a physician that has previous experience with treating colorectal cancer. His primary specialty is listed as Colon & Rectal surgery along with general, with cancer being one of the listed conditions he has expertise in treating. Furthermore, he's particularly seasoned in laproscopic surgery...which might be just what they do, if the tumor is very small. The (assumed) small tumor size is probably why they referred me to him in particular. He has at least 11 years under his belt and has a degree from the private med college in my state, which ranks fairly high. The physician team has members in practice for 30+ years a piece, with memberships on medical boards dedicated to colon and rectal surgery, so reviewing their information has really helped put me at ease!

No word on any oncologist being assigned to my case, though. I assume this is, again, because the tumor must be small pickings.

The funny thing is that I was also found to have internal hemmheroids (I'll never spell that right), and I assume they caused the  bleeding and mucus discharge that tipped me off to a colonoscopy, so my tumor must have been asymptomatic for its small size, but they found it along the way anyway. I might need to have them cut out those little jerks while they're in there! I feel much better when I think about it that way.

You're the best, Mike! Thank you very much for talking this all out with me! I'll let you know about any updates after the consultation!

I honestly and deeply hope you get better than you'd ever expect!

TreadLightly90
Posts: 7
Joined: Sep 2017

Okay, so I went to the consultation:

The surgeon did various scopes to find the original polyp site since he said that any tumor would be too small to detect with an MRI or CT. They were uncomfortable as heck but he found that the original site healed too well and was not detectable. The conclusion was that the polyp was the entirety of the growth, and he worked these results over with my GI doc to pin me at a "cured" stage 0. I put that in quotes because I'll have another colonoscopy in 6 months to make sure.

NHMike
Posts: 214
Joined: Jul 2017

That is fantastic news. So you are NED (No Evidence of Diseas) but, as your team has said, you'll keep an eye on it. Good time for a party. Smile

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