One year anniversary and now delayed surveillance

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Punky44
Posts: 446
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 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

stu
Posts: 1383
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: 2499
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: 446
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 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

NHMike
Posts: 2499
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: 608
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

NHMike
Posts: 2499
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

boxhill
Posts: 608
Joined: Fri Apr 06, 2018 11:40 am

Re: One year anniversary and now delayed surveillance

Postby boxhill » Wed Apr 08, 2020 11:26 am

I saw my oncologist before my infusion yesterday, and he said that given my situation and my ongoing numbers he feels comfortable postponing my MRI for another 4-6 weeks. Unless something happens, off course. He said that the radiology lab is not scheduling many MRIs right now, except for certain things that are considered urgent.

I only hope that the insurance co extends the authorization....!
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

NHMike
Posts: 2499
Joined: Fri Jul 21, 2017 3:43 am

Re: One year anniversary and now delayed surveillance

Postby NHMike » Wed Apr 08, 2020 11:35 am

boxhill wrote:I saw my oncologist before my infusion yesterday, and he said that given my situation and my ongoing numbers he feels comfortable postponing my MRI for another 4-6 weeks. Unless something happens, off course. He said that the radiology lab is not scheduling many MRIs right now, except for certain things that are considered urgent.

I only hope that the insurance co extends the authorization....!


Can you call them to verify that? Best to work on this stuff as soon as possible.
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

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: One year anniversary and now delayed surveillance

Postby juliej » Wed Apr 08, 2020 5:19 pm

Here are the official ASCO guidelines. Hope this helps!

SURVEILLANCE: Can/should patients receiving ongoing surveillance (e.g. imaging for detection of recurrence, active surveillance for existing disease) have that surveillance delayed/interrupted?

In general, as recommended by the CDC, any clinic visits that can be postponed without risk to the patient should be postponed. This likely includes routine surveillance in patients considered to be at relatively low risk of recurrence and those who are asymptomatic during the follow-up period. In situations where existing recommendations provide frequency ranges for interventions (e.g. every 3-6 months) it is reasonable to delay scheduled interventions to the longest recommended frequency duration.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Punky44
Posts: 446
Joined: Mon Oct 01, 2018 4:29 pm

Re: One year anniversary and now delayed surveillance

Postby Punky44 » Thu Apr 09, 2020 1:32 am

Thank you for sharing Julie! I did not realize there were official guidelines on the subject. I guess in a weird way it makes me feel a little better that it’s coming from the top and they believe the benefit of delaying outweighs the risk.

Hope everyone is staying safe <3
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: One year anniversary and now delayed surveillance

Postby rachelfromnyc » Thu Apr 09, 2020 11:50 am

Hi Punky,

Wanted to share what they're doing at my cancer center. I showed up for my regularly scheduled 3 month scan in March right around the time the pandemic was escalating. I was surprised to be the only person in this huge waiting room that is usually full. I asked the front desk about it and they said that they moved all the appointments for people on surveillance out a few weeks and only kept appointments for people like with active disease and are local. I know it's super stressful being delayed but I hope we can get past this pandemic soon and that your mom can get in and have her scan.

Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: One year anniversary and now delayed surveillance

Postby Caat55 » Tue Apr 14, 2020 4:33 pm

I am scheduled for my second colonoscopy post treatment. The first was last year just before reversal. The is my first real one. Should I do it or wait? There are only 9 cases in my county, one in county where hospital is located.
S
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
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 2499
Joined: Fri Jul 21, 2017 3:43 am

Re: One year anniversary and now delayed surveillance

Postby NHMike » Tue Apr 14, 2020 4:55 pm

Caat55 wrote:I am scheduled for my second colonoscopy post treatment. The first was last year just before reversal. The is my first real one. Should I do it or wait? There are only 9 cases in my county, one in county where hospital is located.
S


We have no idea when things are going to open up again so it would depend on you, your doctor and your hospital. Do they have the equipment, supplies and people to do it? If it were NYC and me, then I'd put it off or have it done somewhere else. Some other places, I'd go through with it.
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

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: One year anniversary and now delayed surveillance

Postby Caat55 » Tue Apr 14, 2020 5:00 pm

Thanks Mike. Here in the mountains of California we have been relatively lucky, few cases. As much as I would like to skip it, I think it is important enough to go forward. They have cancelled the routine cases, friends have been rescheduled to August and September.
Take care,
S
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
PET NED 12/18
Clear Colonoscopy 2/19


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