New here, questions for my surgeon

[del]

Hi! I am new here but have been reading this forum for a while. After several weeks of finding small amounts of blood and mucus in my stools (and going to three different doctors), I had a colonscopy and 2 small polyps and 1 large polyp were removed. I got the unfortunate news last Thursday that the large polyp was cancer. It was a big shock to everyone including the gastroenterologist, as I am otherwise a fit 33 year old with no family history of bowel cancer. It still all feels a bit surreal but my family & friends and the medical staff have all been amazing so far and I'm coping with the news much better than I expected.

I have an appointment with a colorectal surgeon on Thursday, so I would like to know if anyone has suggestions for important things I should be asking. I already met with him yesterday for an initial consultation but since then I have had a CT, MRI and sigmoidoscopy (to examine the polypectomy scar) so this next meeting is when we know more about what we are facing and what the suggested treatment plan is.

The gastroenterologist was initially quite optimistic that we caught it quite early after the pathology got back (he told me he "thinks he got it all"), and that I may only require surgery and perhaps radiation, which sounds like he thinks it's stage 1. However, when I got home and read the pathology report for myself, it mentions there is "lymphovascular invasion". Does this mean it is already at least stage 3? Can they already tell this from just the pathology? The full report says: "The specimen consists of a 27x20x11mm dark brown sessile polyp. The base is inked blue and the polyp is sectioned in to six slices. Sections show moderately differentiated adenocarcinoma arising from a tubular adenoma with high grade dysplasia. Tumour infiltrates submucosa (at least) in this sample. There is lymphovascular invasion. Perineural invasion is not seen. In sections where margins are assessable, the tumour is 0.5mm from the nearest diathermied margin. However, the margin is not visualised in all sections and completeness of excision cannot be guaranteed. Mismatch repair enzyme immunohistochemistry pending; supplementary report to follow."

Also, during another CT scan I got in January, it was noted that I have a small (less than 3mm) rounded low-density on my liver. I am worried this could be an early metastisis. The gastroenterologist assured me it is more likely to be a cyst, whereas the surgeon said it's too small to assess and we'd just have to keep an eye on it for the next 6-12 months. I guess I will find out on Thursday if it has changed in the past 2 months with my latest CT, but are there any other tests I should be asking about?

And finally, the sigmosoidoscopy showed that the polyp scar is "located distal to the first rectal fold approximately 2.5cm above the dentate line". I'm worried that this is very low in the rectum and might not be safe for a lower anterior resection. It sounds like they would only be removing a small margin on the anus side of the scar, and also that there is also a higher risk of an anastomic leak. I'm not sure what other questions I should be asking the surgeon about this.

Sorry for all the questions. It's all new to me and I am doing lots of research at the moment. Appreciate any info!

[Andrea1976]

Hi,
sorry that you are here:-( I also had a malignant polyp at 39 year old. From what I understand (others might correct me). LV means that the pathology shows lymphatic invasion in the polyp. It does not mean you have a spread but it is in risk. Once you have surgery and check lymph nodes - you will know for sure. Try to relax - I know it's hard since I am dealing with the same. Big hug!!!

[Jacques]

...I have an appointment with a colorectal surgeon on Thursday, so I would like to know if anyone has suggestions for important things I should be asking...
And finally, the sigmosoidoscopy showed that the polyp scar is "located distal to the first rectal fold approximately 2.5cm above the dentate line". I'm worried that this is very low in the rectum and might not be safe for a lower anterior resection. It sounds like they would only be removing a small margin on the anus side of the scar, and also that there is also a higher risk of an anastomic leak. I'm not sure what other questions I should be asking the surgeon about this...

I don't know too much about this area, but I think what I would do at the next appointment with the surgeon would be to try to get him to show you on a diagram exactly where the polyp was located, and how far it was from the anal verge.

In the post below there is a diagram that shows that the optimal treatment procedures are different depending on which third of the rectum the polyp/tumor is located in.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53147#p419990

I would therefore want to know how far down in the rectum the lower cut would be and how far from the critical sphincter muscles/nerves it would be. I would also want some assurance that the surgeon knows how to do a "Sphincter Sparing Operation" (SSO), since the task of surgery is not only to remove the cancerous tumor and adjacent lymph nodes, but also to spare the nearby nerves and blood vessels that serve the sphincter.

[Nik Colon]

lymphovascular invasion does not mean it's automatically stage 3. They won't know for sure if it's in the lymph until surgery. As far as small spots, that is common and does not mean it's necessarily cancer. Many people have lung and/or liver spots.

[WriterGirl1969]

Hi Del. I'm fairly new here too, and my first appt with surgeon is tomorrow (3/9). Not sure what if anything new I'll find out, but I've gotten lots of good info here already and getting more from your questions/answers on this thread. I'm 46 and can't claim to be totally fit, but I also have no history of CRC in the family. I can definitely appreciate the surreal feeling. It doesn't seem real, and at the same time, seems all too real. It seeps into every thought, doesn't it? It sounds like you're already getting tons of good feedback on what to ask the surgeon, so I won't go there, but wanted you to know you weren't alone in what you were feeling. The great thing is, there's lots of hope to be found here. Prayers for you, hugs from me, and I'll do my best to hang tough if you do.
--Tracy

[del]

Hi,
sorry that you are here:-( I also had a malignant polyp at 39 year old. From what I understand (others might correct me). LV means that the pathology shows lymphatic invasion in the polyp. It does not mean you have a spread but it is in risk. Once you have surgery and check lymph nodes - you will know for sure. Try to relax - I know it's hard since I am dealing with the same. Big hug!!!

Thank you Andrea, I appreciate the kind thoughts! Are you still going through any tests? Or do you have a treatment plan?

[del]

I don't know too much about this area, but I think what I would do at the next appointment with the surgeon would be to try to get him to show you on a diagram exactly where the polyp was located, and how far it was from the anal verge.

In the post below there is a diagram that shows that the optimal treatment procedures are different depending on which third of the rectum the polyp/tumor is located in.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53147#p419990

I would therefore want to know how far down in the rectum the lower cut would be and how far from the critical sphincter muscles/nerves it would be. I would also want some assurance that the surgeon knows how to do a "Sphincter Sparing Operation" (SSO), since the task of surgery is not only to remove the cancerous tumor and adjacent lymph nodes, but also to spare the nearby nerves and blood vessels that serve the sphincter.

Thank you Jacques, I will be sure to ask about a Sphincter Saving Operation. He did show me on a diagram where it is located but it all just sounds very borderline. He bluntly told me that, while he will do everything possible not to touch any nearby nerves or blood vessels, he is going to do whatever he needs to do to remove the cancer and everything else is secondary. The gastroenterologist also told me after the colonscopy that it was 5cm in, so it sounds like it is on the border between the low and mid rectum.

[del]

lymphovascular invasion does not mean it's automatically stage 3. They won't know for sure if it's in the lymph until surgery. As far as small spots, that is common and does not mean it's necessarily cancer. Many people have lung and/or liver spots.

Thank you Nik, that is reassuring.

[del]

Hi Del. I'm fairly new here too, and my first appt with surgeon is tomorrow (3/9). Not sure what if anything new I'll find out, but I've gotten lots of good info here already and getting more from your questions/answers on this thread. I'm 46 and can't claim to be totally fit, but I also have no history of CRC in the family. I can definitely appreciate the surreal feeling. It doesn't seem real, and at the same time, seems all too real. It seeps into every thought, doesn't it? It sounds like you're already getting tons of good feedback on what to ask the surgeon, so I won't go there, but wanted you to know you weren't alone in what you were feeling. The great thing is, there's lots of hope to be found here. Prayers for you, hugs from me, and I'll do my best to hang tough if you do.
--Tracy

Thank you Tracy. I know exactly what you mean, but I think the best thing to do is continue life as normal as possible and not think about it all the time. There is a lot of inspiration on these forums and I think I will be coming back regularly. Are you still waiting for your diagnosis?

[Andrea1976]

I also had a polyp - mine was the one that is like mushroom with a stalk. I assume your is a sessil polyp.

I agree that you need to continue living your life as normal as possible. Also you should get at least 2 opinions from board certified colorectal surgeons.

[del]

Andrea, the gastro doc said mine was in between the two, flat and wide like a sessile polyp but attached by a short stem. He described it as "Paris classification Isp" in the report, which google tells me is a "subpedunculated polyp".

I hadn't even thought of getting a second opinion as everything has been organised for me by the hospital so far. I'm in Australia so not sure what the equivalent of a "board certified" surgeon is here, but I will do some research. Thanks for the advice!

Your signature says you are considering surgery. Have you spoken with any surgeons yet? What are they recommending?

[Nik Colon]

As far as other tests, I would ask about getting a PET scan. That will help in possibly determining spread, if any (depending on size and other factors, but is a great tool to help when combined with CT and can sometimes pick up cancer not seen or missed on CT although CT is the standard)

[Andrea1976]

Nik,
Not sure why pet scan is not used. Onco and 2 of the surgeons who I met said no to pet scan. The most experience 44 years colorectal surgeon / professor sent me for pet/ct. But it could be because I was so nervous about Cancer... Why is ct/pet not used much?

[Nik Colon]

Nik,
Not sure why pet scan is not used. Onco and 2 of the surgeons who I met said no to pet scan. The most experience 44 years colorectal surgeon / professor sent me for pet/ct. But it could be because I was so nervous about Cancer... Why is ct/pet not used much?

One reason is cost, PET scans are much more expensive, they pick up metabolic activity which can be caused by inflammation and other things other than cancer, extra exposure to radiation, etc. They are mainly used if mets are suspected and/or to confirm what they suspect as cancer on CT. Depending on size also, it may not always pick up cancer also. So, a few reasons, but it should be used more imo.

[del]

Thanks, I will ask the surgeon about the possibility of a PET scan.