Newly diagnosed rectum cancer

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NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectum cancer

Postby NHMike » Mon Oct 01, 2018 8:25 pm

rtcasper wrote:Hi everyone. Had my surgery last Tuesday, Sept. 25. It was supposed to be about 4 hrs, ended up going 7. Surgeon said he didn't like the blood flow he was getting from my colon, so he took off a bit more to do it right. Ended up removing approximately 16 inches including most of rectum. I was released to home on Friday, so just recovering. Getting used to the bag, loop ileostomy, trying to get a little thickening going on, but it's pretty darn amazing how little pain I've experienced from any of this so far, mostly back and butt from laying around. I make sure to get up and walk around, get the blood flowing. Awaiting pathology results to find out staging and next course of action,and will update then. Overall, mentally, feel pretty good, glad it's "out" of me, understand still have a long road ahead, but also aware it could be much worse.

Much love and prayers to all! !


Sounds like things went quite well. Next thing is adjusting to the bag and experimenting with products if there are any issues.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

rtcasper
Posts: 41
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Tue Oct 02, 2018 6:26 pm

Received call from Dr. Kalady. Official pathological staging of T1N0M0. He will take this to the board, discuss with my oncologist and we'll come together for a plan for follow up. Any thoughts on what u guys might consider going forward?
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Newly diagnosed rectum cancer

Postby O Stoma Mia » Wed Oct 03, 2018 12:13 am

rtcasper wrote:Received call from Dr. Kalady. Official pathological staging of T1N0M0. He will take this to the board, discuss with my oncologist and we'll come together for a plan for follow up. Any thoughts on what u guys might consider going forward?

I don't have any experience with neo-adjuvant chemo/radiation or with pathology reports based on previously treated tumors. (My chemo/radiation was post-surgery, and my pathology report was based on a raw, un-treated resected tumor). There is a big difference in how the two kinds of pathology reports are to be interpreted.

For your upcoming meeting(s) with your surgeon/oncologist, I would suggest that you get a printed copy of the full pathology report and go through it in advance with a fine-tooth comb, making sure that you understand all of the technical terms that are used. This report is one of the key input items for your staging and initial treatment planning

Here are some suggestions:

  • Terminology - You should learn the syntax for pathology reporting when specimens have had prior treatment before surgical resection. There is a prefix "y" which is for indicating that the specimen has already had chemo or radiation treatment. The prefix "p"" is for indicating that this is a pathology assessment (as opposed to a clinical assessment).

    Your pathology result should be designated as ypT1N0M0 (pathologic partial response, pPR ).

    If you had had a complete pathologic response, then your result would have been designated ypT0N0M0 (pathologic complete response, pCR)

    Before surgery, you had an MRI clinical staging of cT2N1M0/cT3N1M0, or the equivalent of Stage IIIa. Clinical staging assessments are done mainly by imaging tests of one kind or another: CT scan / MRI scan / ultrasound.

    In summary, your short course neoadjuvant chemo/radiation resulted in a down-staging of your cancer from cT2N1M0/cT3N1M0 to ypT1N0M0.
    .
  • G049 Dataset for histopathological reporting of colorectal cancer - Royal College of Pathologists
    https://www.rcpath.org/resourceLibrary/g049-dataset-for-histopathological-reporting-of-colorectal-cancer.html

    This is a 62 page document. If you have time, it would be good if you could skim over the whole document to familiarize yourself with the terminology and the structure of pathology reporting for colorectal cancer specimens. If you don't have time, then focus on the sections below which are the ones most relevant to your case. Appendices C and F are definitely relevant. Appendices E and H are relevant if they were able to do MSI testing on the residual tumor tissue.

      pp. 27-28 - Chapter 9 - Pathological staging
      p. 48 - Appendix C - Reporting proforma for colorectal carcinoma resection specimens
      p. 50 - Appendix E - Reporting proforma for further investigations for colorectal carcinoma (MSI: Microsatellite Instability testing)
      pp. 51–55 - Appendix F- Reporting proforma for colorectal carcinoma resection specimens in list format
      pp. 59-60 - Appendix H - Reporting proforma for further investigations for colorectal carcinoma in list format (MSI: Microsatellite Instability testing)
  • You can familiarize yourself with this general area by reading a few articles on the pathology reporting of neo-adjuvant-treated tumors, for example:
    https://www.nature.com/articles/srep34923

Questions:
- Did they do any scans after your short-course chemo/radiation and before your surgery?
- Are they going to test your CEA after surgery and before you start adjuvant therapy (very important to do this, for baseline purposes).

jedimomof3
Posts: 6
Joined: Thu Jul 26, 2018 12:47 am

Re: Newly diagnosed rectum cancer

Postby jedimomof3 » Thu Oct 04, 2018 10:58 pm

I had about the same stage of rectal cancer as you. I had a ULAR with temp loop ileo and just had a reversal 9 days ago. I have no rectum left at all at all. It's actually going better than I thought it would. I didn't have any chemo after and I'm so glad. Out of the 18 nodes they pulled, they were all negative. Hoping for the best for you!
39 F - Mom of 3=14,12,9
Jan-May 2018-Rectal Bleeding
6-11-18 coloscopy/CT same day
Stage 2 rectal Cancer, T2N0
CEA 5.6
6-18 PET Scan, possible nodes
7-3-18 port placement
7-9-18 start rad & xeloda
7-17-18 decide rad isn't for me, stop treatment
7-25-18 get 2nd opinion
7-27-18 pelvic MRI w/contrast, nodes look clean
8/6/18 genetic results in
neg for colorectal cancer, positive for BRCA1
8-14-18 ULAR (no rectum left), temp Ileo
18 nodes clear, no Chemo!
9-25-18 ileo reversal, port removal

rtcasper
Posts: 41
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Thu Oct 18, 2018 4:06 pm

Hi guys, just an update. A little over 3 weeks out from surgery, went back to work earlier in the week. I work moat of the day til I'm tired, then head home. The bag is getting easier to deal with, I won't go so far as to say I hardly notice it, but it's bearable. Had a bad day about a week ago after most of visiting family had headed home, I live far from most of my immediate family, just really sad about everything, the first day I was really by myself since surgery. But it passed pretty quickly. I've really noticed the rectal fulness/pressure over the last week as well. Likely just the healing process going on down there, after exploring some links in here, it's pretty normal from what I can tell. I'll meet with my onc next week, so I update then. My best to you all!

Jedi mom, I hope your reversal is still going well. I tried to pm you to ask some questions, but it won't go through? If you're able, pm me and let me know how things are going. Best of luck.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectum cancer

Postby NHMike » Sat Oct 27, 2018 1:45 pm

rtcasper wrote:Hi guys, just an update. A little over 3 weeks out from surgery, went back to work earlier in the week. I work moat of the day til I'm tired, then head home. The bag is getting easier to deal with, I won't go so far as to say I hardly notice it, but it's bearable. Had a bad day about a week ago after most of visiting family had headed home, I live far from most of my immediate family, just really sad about everything, the first day I was really by myself since surgery. But it passed pretty quickly. I've really noticed the rectal fulness/pressure over the last week as well. Likely just the healing process going on down there, after exploring some links in here, it's pretty normal from what I can tell. I'll meet with my onc next week, so I update then. My best to you all!

Jedi mom, I hope your reversal is still going well. I tried to pm you to ask some questions, but it won't go through? If you're able, pm me and let me know how things are going. Best of luck.


Things generally get better with the bag with time. It sounds like you haven't had an leaks or other accidents and that's a good thing so early in.

I recommend building an emergency kit if you haven't already done so. I got some samples from Coloplast and they provided a nice little bag for putting emergency supplies. I use it now for supplies after the ileostomy reversal.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

rtcasper
Posts: 41
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Sun Oct 28, 2018 7:23 pm

Hi Mike,
Yeah, luckily, no accidents. I did build a little kit for traveling, work, etc. Just in case. I've been sleeping in my recliner since I got back home from surgery, it keeps me ever so slightly upright and I can't really roll from side to side. It's been great, tho my wife likely wouldn't agree, lol. Although she does have the bed all to herself now......
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Newly diagnosed rectum cancer

Postby Caat55 » Tue Oct 30, 2018 8:11 pm

Ditto what Mike said. I got a sample kit from Hollister, Coloplast and Conatec. I put one in each of our cars, the other in my desk. I loved sleeping in bed but can understand the easy in/out of a recliner. Things get better
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018


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