One year anniversary and now delayed surveillance

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Punky44
Posts: 436
Joined: Mon Oct 01, 2018 4:29 pm

One year anniversary and now delayed surveillance

Postby Punky44 » Sat Mar 21, 2020 1:28 pm

A year ago today my mom was wheeled away from me in a hospital stairway at Mayo where she underwent a 6 hour surgery to get NED.

A celebratory day indeed that we’ve made it this far, but of course now with this pandemic, she got calls that her CEA / CT scan and colonoscopy have been postponed. (CT scan is at Mayo and colonoscopy is local.)

Is anyone else dealing with delayed surveillance appts? I am so worried that despite doing everything we can do keep her safe from covid, we run the risk of cancer sneaking back in undetected.

And not knowing how long this is going to go on makes it even more anxiety inducing.

How “dangerous” is it to be 2-3 months behind on surveillance?
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 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

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

stu
Posts: 1299
Joined: Sat Aug 17, 2013 5:46 pm

Re: One year anniversary and now delayed surveillance

Postby stu » Sat Mar 21, 2020 6:49 pm

We are getting a lot of that and caused a lot of anxiety and chaos . However today we got a bit more insight . Private facilities coming into help and buildings being taken over to restructure services away from hospitals that are treating corona patients . Not well communicated but it could be a delay to put other plans in place .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

NHMike
Posts: 2398
Joined: Fri Jul 21, 2017 3:43 am

Re: One year anniversary and now delayed surveillance

Postby NHMike » Mon Mar 23, 2020 4:38 pm

My August appointments for CEA will likely get delayed. Could you get the CEA on time?
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; 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, 2/12 1.2
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
2/19: Clean CT

Punky44
Posts: 436
Joined: Mon Oct 01, 2018 4:29 pm

Re: One year anniversary and now delayed surveillance

Postby Punky44 » Tue Mar 24, 2020 1:10 am

Thank you Stu, I hope they will come up with a safe plan.

NHMike, we are going to call and ask—that bloodwork was supposed to be up at Mayo as well same day as scan so now we are wondering if we should get it local “on time” (or if that’s even safe...)

Unrelated NHMike but I was reading your signature CEAs...was there a reason for the rise you experienced?
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 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

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

NHMike
Posts: 2398
Joined: Fri Jul 21, 2017 3:43 am

Re: One year anniversary and now delayed surveillance

Postby NHMike » Tue Mar 24, 2020 8:07 am

Punky44 wrote:Thank you Stu, I hope they will come up with a safe plan.

NHMike, we are going to call and ask—that bloodwork was supposed to be up at Mayo as well same day as scan so now we are wondering if we should get it local “on time” (or if that’s even safe...)

Unrelated NHMike but I was reading your signature CEAs...was there a reason for the rise you experienced?


My exercise chart was similar to the CEA chart so we concluded that it was related to exercise - and probably the chemo. I was walking/running 100 miles a week in the last month of chemo.
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; 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, 2/12 1.2
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
2/19: Clean CT

boxhill
Posts: 490
Joined: Fri Apr 06, 2018 11:40 am

Re: One year anniversary and now delayed surveillance

Postby boxhill » Tue Mar 24, 2020 4:51 pm

My physical therapy appts--for arthralgia caused by Keytruda--have been cancelled, as have my accupuncture appts for the same thing. My colonoscopy--ironically, a 10-year followup to my first in 2010!--was cancelled.

My insurance company FINALLY authorized an MRI instead of a CT, but it looks like that might not be scheduled. I hope not. I really don't know what they are doing about 3 month surveillance for people actively being treated, but I think that routine 3 month followups appear to have been postponed. They MAY be doing routine followup bloodwork. So far, my bloodwork and infusions every 3 weeks continue.

Obviously its a balancing act between covid-19, which might kill you now, and cancer, which might kill you later.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable

NHMike
Posts: 2398
Joined: Fri Jul 21, 2017 3:43 am

Re: One year anniversary and now delayed surveillance

Postby NHMike » Tue Mar 24, 2020 4:57 pm

boxhill wrote:My physical therapy appts--for arthralgia caused by Keytruda--have been cancelled, as have my accupuncture appts for the same thing. My colonoscopy--ironically, a 10-year followup to my first in 2010!--was cancelled.

My insurance company FINALLY authorized an MRI instead of a CT, but it looks like that might not be scheduled. I hope not. I really don't know what they are doing about 3 month surveillance for people actively being treated, but I think that routine 3 month followups appear to have been postponed. They MAY be doing routine followup bloodwork. So far, my bloodwork and infusions every 3 weeks continue.

Obviously its a balancing act between covid-19, which might kill you now, and cancer, which might kill you later.


My appointments are in Boston in August and they have 1,159 confirmed vs 101 confirmed for my state right now. MA is going parabolic - that is they are in the acceleration phase. So numbers could get far higher. I hope not but I would consider going to Dana Farber in Derry, NH (satellite) to get the bloodwork and review done - obviously by another doctor.
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; 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, 2/12 1.2
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
2/19: Clean CT


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