The Colon Club

Good luck with your surgery. The nurses and staff on 3E are great. Custard was my comfort food.
Don't hurry home, getting in and out of bed is a milestone.

Good luck with the surgery and I wish you a smooth recovery!


Claudia

Good luck tomorrow retiredteacher
Another hurdle jumped in the journey
Adele x

Thank you Mike and Stoma and Claudia and Susan for the followup! You are amazing. Mike you may not remember posting an article detailing surgeon experience/outcome relationships - this was an eye opener for me and helped to seed the direction to go to Stanford (out of network.) As it turned out, the tumor after neo-adjuvant CRT was reduced to 3 cm located 12 cm from anal verge (Stanford MRI on Feb. 8.) In the OR, the surgeon determined that no ileostomy was required. I did feel prepared for an ileostomy <thanks to you sharing your a) challenges and b) expertise> if needed - imagine my shock when I woke up without hardware on my tummy. I thought maybe something had gone horribly wrong and the surgery was aborted, or that I was hallucinating from the drugs. No ileostomy. The surgeons were great - doc pulled in an OBGYN and they took out a remaining ovary and fallopian tube. The nurses on E3 were amazing - Pinky, Myra, Michol, Eric, Miss Nancy, Mike the Nurse Manager - could not be more impressed or happier. The baked custard!!! Like creme brûlée without the brûlée! I was trying to walk 10,000 steps daily leading up to surgery, am hitting just 5000 daily now. Path report came through yesterday, looks like 0/21 lymph nodes and just .3 cm “hot spot” left after treatment. Tired and sore but feeling really great overall and very happy. Thank-you, thank-you, thank-you!

And Adele! Thank-you for the followup!
Terri

I am so happy for you, that's wonderful. Glad to hear your 3E experience was similar to mine. You must be home and grateful to not have to deal with anything else for a little while. Will you still have to do mop up chemo?

Susan

Yes, I am guessing probably chemo. Lymphs were 0/21 but there was a still a hot spot about 1/6 inch squarish. Plus, initial staging may still be only estimated. Will see the surgeon again March 9 and back to my local oncologist the week of March 13 to see what he has to say. Still feeling pretty good, but pushed too hard Sunday and yesterday and created unnecessary pain. You athletes (MIKE!) I do not know how you do it - hat is off to you!

Terri

retiredteacher wrote:...Will see the surgeon again March 9 and back to my local oncologist the week of March 13,..i

Any news from your meeting with the surgeon on Friday?

Do you have your questions ready for your upcoming meeting with the oncologist?

Thank you for the followup Stoma - nothing new. She peeled off the last of the steri strips; incisions look great. I took her some jam from our hometown. The pathology showed T1 on a tiny hotspot left, 0/21 lymph nodes; >2cm clear margins; about 18 - 24 cm removed sigmoid/rectum; G1 well differentiated; small amt residual invasive carcinoma 0.3 cm; residual cancer with evident tumor regression, but more than single cells or rare groups - partial response score 2. Stanford MRI (2-8) states "markedly T2" - invasive to muscle ; Original biopsy from colonoscopy states G2 with comments about it being a fragmented and difficult sample;PET from Jan 22 states "near complete response", radiologists notes from November state "T3 N0 M0 by exam and PET-CT" So I am going to grid this out and present it to the oncologist so that he can explain his staging. Thank you for the nudge - I will get on this today and also make a list of questions. You are awesome.

Great news!

Susan

retiredteacher wrote:... I have learned so much; I want to start an informational local CRC support group...

I think you are in a good position to start an informational local CRC support group. As a retired teacher, you obviously have some experience with lesson planning and organizing information. You could use this experience to improve the patient information environment in hospitals like your local hospital.

You could start by reading a manual designed for training Patient Navigators. You might be able to offer suggestions to improve the current system at your local hospital.

Here is a 106-page CRC patient navigator training manual that you could review in your spare time:

2018 CCSP Patient Navigation Program Manual
http://www.ucdenver.edu/academics/colleges/medicalschool/centers/cancercenter/CommunityAndEducation/colorectal/patientnavigation/program-manual-pn-guidebook-and-forms/Documents/2018%20CCSP%20Patient%20Navigation%20Program%20Manual.pdf

This Patient Navigation Guidebook explains the roles and
limitations of a Colorado Colorectal Screening Program
patient navigator, and provides specific information about
the program, colorectal cancer screening, diagnosis,
treatment and recovery
.

Here are the accompanying training slides:

CCSP PN 101 Training Sides
http://www.ucdenver.edu/academics/colleges/medicalschool/centers/cancercenter/CommunityAndEducation/colorectal/patientnavigation/program-manual-pn-guidebook-and-forms/Documents/CCSP%20PN%20101%20TRAINING.pdf


.

Met with oncologist yesterday - he wants to do mop up chemo four months CAPEOX starting as soon as next week or when the nurses can slip me into the schedule. He wants to try without a port as my veins still look good and the few number of infusions required. Glad to get this party started - the sooner we start, the sooner it will be completed. Woo-hoo!!

Better safe . I start Capox on Thursday. Opted for port as I wanted to keep those beins looking good.
Last step hopefully.
Susan

I did capox with no port. Did six rounds and really had no problems. If it was more often than every 3 weeks I may have opted for the port. Good Luck.

Infusions starting Thursday - so glad to have reached this "Part Three."