When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

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Marie25
Posts: 27
Joined: Tue Aug 20, 2019 9:32 am

When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby Marie25 » Mon Jan 13, 2020 5:04 pm

Next week short course radiation begins on Thursday. It is ending the following Wednesday and then surgery is Thursday the 30th. We have 1 more meeting with the colorectal surgeon before the surgery. Any suggestions on what to ask him is appreciated. Surgery is at Mayo Clinic and the surgeon already knows he will get clear margins, and he said the pathology will be done immediately.

It sounds like he may not need mop up chemo since he already got 8 cycles but I think it would be beneficial?

For all you NED people... how long does it take to get feeling back to normal after the tumor is removed? As in, eating doesn't hurt the stomach or make you run to the bathroom immediately anymore? Higher energy, Appetite comes back etc...
Supporter to my husband
Rectal adenocarcinoma
Stage 3 T3N+
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020

Punky44
Posts: 421
Joined: Mon Oct 01, 2018 4:29 pm

Re: When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby Punky44 » Mon Jan 13, 2020 6:31 pm

Hi! Your post caught my eye because your treatment plan seems identical to my mom’s who also had hers at Mayo.

Will you be getting a temporary ileo?

Who is your surgeon if I may ask?

My mom was told she did not need additional chemo beyond the 8 neoadjuvant cycles of Folfox she received before radiation and surgery.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — CT showed nodules on lungs—possible infection or mets—PET showed nothing—follow up CT on 1/27

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Marie25
Posts: 27
Joined: Tue Aug 20, 2019 9:32 am

Re: When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby Marie25 » Mon Jan 13, 2020 11:52 pm

Punky44 wrote:Hi! Your post caught my eye because your treatment plan seems identical to my mom’s who also had hers at Mayo.

Will you be getting a temporary ileo?

Who is your surgeon if I may ask?

My mom was told she did not need additional chemo beyond the 8 neoadjuvant cycles of Folfox she received before radiation and surgery.


Husband will be getting a permanent colostomy since he opted for short course. Dr. Behm is the surgeon and he said he could attempt the temp ileo but it is likely my husband would have "accidents" since the surgeon has to take some of the sphincter muscles to get clear margins.
Supporter to my husband
Rectal adenocarcinoma
Stage 3 T3N+
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020

Punky44
Posts: 421
Joined: Mon Oct 01, 2018 4:29 pm

Re: When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby Punky44 » Tue Jan 14, 2020 1:11 am

Oh sorry I missed that it was your husband in your signature. Is his tumor super low? My mom had short course radiation but got the temp ileo and got it reversed about 3 months later.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — CT showed nodules on lungs—possible infection or mets—PET showed nothing—follow up CT on 1/27

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Marie25
Posts: 27
Joined: Tue Aug 20, 2019 9:32 am

Re: When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby Marie25 » Tue Jan 14, 2020 2:38 pm

Punky44 wrote:Oh sorry I missed that it was your husband in your signature. Is his tumor super low? My mom had short course radiation but got the temp ileo and got it reversed about 3 months later.



Yes it's pretty low and possibly invading part of the sphincter muscle. The goal is definitely to cure him s0 some of that muscle has to come out
Supporter to my husband
Rectal adenocarcinoma
Stage 3 T3N+
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020

JJH
Posts: 183
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: When do you feel back to normal? Surgery soon. NED? Please read Looking for insight

Postby JJH » Tue Jan 14, 2020 2:42 pm

Marie25 wrote:... Dr. Behm is the surgeon and he said he could attempt the temp ileo but it is likely my husband would have "accidents" since the surgeon has to take some of the sphincter muscles to get clear margins.

I wouldn't worry too much if I were you. Your husband's surgeon is a Board Certified colorectal surgeon and his hospital is currently ranked #1 nationwide in Gastroenterology and GI surgery and is "High Performing" in colon cancer surgery according to the ratings.

Getting ready for surgery
viewtopic.php?f=1&t=62768&p=494630#p494587

Hospital packing lists
viewtopic.php?f=1&t=50471&p=387437#p387437

Marie25 wrote:Next week short course radiation begins on Thursday. It is ending the following Wednesday and then surgery is Thursday the 30th. We have 1 more meeting with the colorectal surgeon before the surgery. Any suggestions on what to ask him is appreciated...

Questions to ask the doctor
viewtopic.php?f=1&t=60747&p=481109#p481109
http://go.ccalliance.org/treatmentquestions
https://health.usnews.com/conditions/ca ... ppointment


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