The Colon Club

Update: It turns out that it might be a recurrence at the original site (anastomosis). I know people here have experienced this before, but I'm wondering what options you were presented. I have a MRI on Sunday to confirm and a meeting with the surgeon next Thursday. I am also having an MRI of the liver because there was slight uptake there, although she thinks that's just inflammation.

Also, it's baffling that this supposed mass wasn't seen in my most recent colonoscopy. I know my surgical site is tricky and they had to perform a partial colonoscopy, endoscopy, and CT colonography in order to see the whole colon. So perhaps between the three they couldn't see clearly right at the site?

heiders33 wrote:Update: It turns out that it might be a recurrence at the original site (anastomosis). I know people here have experienced this before, but I'm wondering what options you were presented. I have a MRI on Sunday to confirm and a meeting with the surgeon next Thursday. I am also having an MRI of the liver because there was slight uptake there, although she thinks that's just inflammation.

Also, it's baffling that this supposed mass wasn't seen in my most recent colonoscopy. I know my surgical site is tricky and they had to perform a partial colonoscopy, endoscopy, and CT colonography in order to see the whole colon. So perhaps between the three they couldn't see clearly right at the site?

What's the size of what they found? I don't know what the connection looks like but it's a surgical connection so maybe it normally looks pretty bumpy.

Sorry to hear this, but, if it is, then it’d be better if it’s at the original site, a colon resection is much more effective and less complex than a hepatectomy and it’d mean that it hasn’t spread. Recurrences at the original site mostly occur within the first three years. Stay strong.

The original site is actually the recto-sigmoid area, and it's very scar-tissued due to radiation. Not sure how easy it will be to surgically remove.

@NHMike, they don't know the size because it was a PET scan and it only shows uptake. I think she said the uptake was a bit higher than my PET a year ago, but I can't remember.

And now I’m looking at my CEA - 9.8! And my LDH is 437! It was 168 three weeks ago.

From the studies I've been able to read online that mention CEA increase, it seems that a slower, more regular increase tends to be associated with a local recurrence, whereas a sudden fast rise is more likely to be metastatic spread. Your rise definitely fits the first type of response more, which would be consistent with a recurrence at the original site. Lesser of two evils I guess!

Very interesting, then that could be what it is. Of course I had radiation before my LAR, which is supposed to reduce the chance of local recurrence - but I seem to always beat the odds on those things! I also had clear margins. Oh well, cancer sucks.

No doubt about that
Hopefully your upcoming MRI can provide answers, one way or another. The uncertainty is very hard to live with...

heiders33 wrote:The original site is actually the recto-sigmoid area, and it's very scar-tissued due to radiation. Not sure how easy it will be to surgically remove.

@NHMike, they don't know the size because it was a PET scan and it only shows uptake. I think she said the uptake was a bit higher than my PET a year ago, but I can't remember.

Do you have the actual radiology report? If not, you need to get it. It'll tell you what the uptake value is of that spot called SUV. If you don't have the previous PET report, I would also get that too.

The common guidance is to always get copies of your scan images on CD to take with you. You should also ask for those. Per my other thread about my CEA situation, I was able to calm myself a little while waiting for the experts to review my scan images by looking at the images myself on CD. Once someone points out what you're looking at with a PET image and what is a bad/suspicious spot, it's very easy for a lay person to do a gross examination of the images to see something wrong. The CDs I get from the scanning facility includes all the software you need to load up the images. Using a mouse makes it easy to scroll through the image slices. Any spot on the scan, I can click on it and the software will tell me the SUV of that location. Since I have copies of pretty much all the scans I had done since being diagnosed, I was able to put my recent PET scan images next to the last one I had done in 2017 to see if there were any differences. This is also what radiologists will do when reviewing your scan. If you use the same facility for all of your scans, it will be easy for them to make comparisons. If you are starting anew with this facility, it is always a good idea to provide them with your scans from the previous facility for them to do a comparison. I stopped using the scanning facilities associated with my local hospital when I switched oncologists. Since the new facility had no previous scans for me, at my first a scan appointment, I brought CDs of my previous scans for the admin to load up into their system so the radiologist could use them for a comparison.

zx10guy wrote:Do you have the actual radiology report? If not, you need to get it. It'll tell you what the uptake value is of that spot called SUV. If you don't have the previous PET report, I would also get that too.

Yes, I have the actual report. I 'm not brave enough to look at the actual scans though. When I switched to MSK, I gave them copies of CD's of all my most recent scans - this was a requirement. My new scans are in their system along with old. Yesterday she checked my previous PET scan right on the spot. The uptake in this "soft tissue mass" was 8.6, up from 2.5 on the prior scan. There was also an SUV of 5.3 around the ileocecal valve in my most recent scan.

At MSK they have better scan machines than the place I went to previously. She said that my previous PET scan was a bad image.

heiders33 wrote:

zx10guy wrote:Do you have the actual radiology report? If not, you need to get it. It'll tell you what the uptake value is of that spot called SUV. If you don't have the previous PET report, I would also get that too.

Yes, I have the actual report. I 'm not brave enough to look at the actual scans though. When I switched to MSK, I gave them copies of CD's of all my most recent scans - this was a requirement. My new scans are in their system along with old. Yesterday she checked my previous PET scan right on the spot. The uptake in this "soft tissue mass" was 8.6, up from 2.5 on the prior scan. There was also an SUV of 5.3 around the ileocecal valve in my most recent scan.

At MSK they have better scan machines than the place I went to previously. She said that my previous PET scan was a bad image.

Did your GI doctor note the anastomosis area being inflamed or unusual looking? There is a possibility the soft tissue mass is on the outer part of your colon/rectum area where a colonoscopy won't see it.

It's not easy to say this and I'm not a doctor. But the increase of SUV from 2.5 to 8.6 is pretty significant. The number of 8.6 by itself is significant. I'm hoping it's residual from the radiation or some sort of inflammation type situation. But something is going on at the location for sure.

No, it wasn't noted in any of my previous colonoscopies that I am aware of.

Yes, I see now that it's a significant increase. I have no doubt it's a local recurrence, just need to confirm it with the MRI. It seem so unfair because honestly that's the last place I expected it to recur - I did radiation and I had clear margins after my LAR. But this cancer won't give up.

It turns out I was right. There was a 5-7% chance that I would have a local recurrence in my rectum, and I am officially in that group. I have a small tumor, right at the anastomosis, where I had my low anterior resection two years ago. Dr. Paty is recommending targeted SBRT therapy since the tumor is in the presacral area between the rectum and the sacrum. He does not recommend surgery because it's in a tricky spot. He says there is a high chance of cure with this treatment. There is a risk of a fistula, but I will know more when the tumor board meets on Monday - Dr. Kingham, Dr. Paty, Dr. Kemeny, and Dr. Chris Crane. They will discuss this recurrence as well as my liver MRI, which looked okay to Dr. Paty, but the two Dr. K's will take a closer look since they are the experts.

Sorry to hear about the reoccurrence, but it sounds like you're in good hands!!

Is there an update on how your treatment went? How is it possible you can do SBRT when you already had 28 days of chemorad? I thought we normally receive the maximum allowed radiation at where the anastomosis is located. I’m in a similar situation, but surgery has been the only option on the table.