Big Jay wrote:Ugh, this not knowing stage it terrible enough w/o the docs screwing around. I'm so sorry for you.
In my personal experience: the GI doc said my tumor was barely 2cm from the "dentate line" which almost certainly meant I'd have a permanent colostomy. However, the MRI and CT scan confirmed it was 9cm from the anal verge which means sphincter sparing. From my conversations my rectal surgeon, and another one, they have a pretty dim view of GI docs when it comes to these things. However, they are surgeons so they tend to have a dim view of non-surgeons.
Whoever ends up doing the surgery will want to actually see the thing for themselves so they'll at least bring you in for a sigmoidoscope if they can't poke at it with their finger. This'll give them a good idea what you're dealing with.
How do you know who's the best doctor? I've no idea. I've been going the Hopkins route from the beginning and, after the cancer diagnosis, I was just assigned to Dr. Bashar Safar who will be my surgeon. My wife's a pharmacist and, through her nurse contacts, we were able to get some background info and all have said he's excellent. So, I'll stick w/ him. Is the the best? Boy I hope so...
BTW, I'm also a mechanical engineer from MD. I've not worked in actual engineering for a while but did work for Henry Adams from '97-'02 and I still keep up w/ PDHs so we've probably crossed paths at an ASHRAE meeting or two.
Marylandmaniac wrote:SO I was diagnosed with colon cancer June 29th after a colonoscopy. I am 46 and only had some rectal bleeding at the end of April and went in to see a GI. He thought hemorrhoids but because my dad died of esophageal cancer 2 years before he was concerned and wanted to do full scope. I was thinking just a screening and wasn't in a rush. I was shocked. Got blood work done and CEA level is 8.6. Got a CT scan and they said tumor is contained and no lymph node activity. GI seemed to think this great news and referred me to a surgeon. Also wanted me to get MRI which is scheduled for early next week. I just saw surgeon who turns out to be a general surgeon though a very highly respected one. Right there I knew I was not in best hands. All he had was GI's report and did not have CT scan. Basically made it sound much more serious and that I should go to Hopkins. He did an internal exam and said he felt a small bump that was probably another tumor closer to the anus. ??? How the hell would you know this? I was so shocked I completely forgot that I have had a small bump between my vagina and anal wall that I have had for over 15 years that my OBGYN had checked out back then and ruled was nothing. Remembered it on the way home. Obviously I am going to talk to my GI tomorrow and go see a colorectal surgeon who knows what he is talking about and has all he facts in front of him before he scares the hell out of me.
How do you deal with so much uncertainty and how do you know who to trust?
PRS wrote:Marylandmaniac, do you have rectal or colon cancer? They are not the same and the treatments are different. IMHO you need to put your engineer cap back on and start from basics to figure out what you have, and then how to get the best treatment.
Ideally you want a treatment center with a "Tumor Board" that may consist of an oncologist, a radiation oncologist, and a board certified colorectal surgeon. Working together these experts would determine your optimum treatment plan.
Marylandmaniac wrote:WHat I have from the CT scan and colonoscopy is it is in distal sigmoid, proximal rectum around 10 cm from anal verge. GI said colon but surgeon said rectal. I just got some good referrals from friends in medical field and am talking to doctor tomorrow about getting my results sent to them and to get in quickly. Do most of you go through GI or just have all your tests and go on your own?
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