1st CT since diagnosis - question

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ilovemyfrenchie
Posts: 12
Joined: Fri Nov 03, 2017 9:20 pm

1st CT since diagnosis - question

Postby ilovemyfrenchie » Thu Jan 04, 2018 10:52 am

Hello everyone!

Today is my mother's first CT since her initial diagnosis in the ER. We are both so nervous! she has had 5 rounds of folriri + avastin and has been tolerating it okay. She did have to add a BP medicine due to the Avastin. Her starting CEA was 171 right before chemo, now it is 25.1. It's that nasty mets to the peritoneal that bothers me because it wasn't found on the initial CT but in surgery.

She sees the oncologist on Monday for the CT results. Is there any recommendations of what to expect or what to ask the oncologist on Monday? Will she show us the images or just verbally go over it with us?
Last edited by ilovemyfrenchie on Thu Jan 04, 2018 12:25 pm, edited 1 time in total.
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/30/17 started Folfiri with Avastin (CEA 171)
3/18 CT = liver Mets shrinkage (CEA 7.9)

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: 1st CT since diagnosis

Postby SweetC80 » Thu Jan 04, 2018 11:46 am

Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: 1st CT since diagnosis

Postby rachel2017 » Thu Jan 04, 2018 9:47 pm

SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!


i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

Aqx99
Posts: 399
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: 1st CT since diagnosis - question

Postby Aqx99 » Fri Jan 05, 2018 7:38 am

ilovemyfrenchie wrote:Hello everyone!

Today is my mother's first CT since her initial diagnosis in the ER. We are both so nervous! she has had 5 rounds of folriri + avastin and has been tolerating it okay. She did have to add a BP medicine due to the Avastin. Her starting CEA was 171 right before chemo, now it is 25.1. It's that nasty mets to the peritoneal that bothers me because it wasn't found on the initial CT but in surgery.

She sees the oncologist on Monday for the CT results. Is there any recommendations of what to expect or what to ask the oncologist on Monday? Will she show us the images or just verbally go over it with us?


My oncologist just explains the results of the CT to me. You can always ask to see the images if hers doesn't show them to you. Good luck!
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET confirmed NED

mpbser
Posts: 393
Joined: Wed Apr 19, 2017 11:52 am

Re: 1st CT since diagnosis - question

Postby mpbser » Fri Jan 05, 2018 8:18 am

I don't understand why you would be having a CT as surveillance when CTs aren't able to detect metastases to the peritoneum area. If I recall correctly, MRIs do.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: 1st CT since diagnosis

Postby SweetC80 » Fri Jan 05, 2018 9:01 am

rachel2017 wrote:
SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!


i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.


We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

User avatar
Robino1
Posts: 454
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: 1st CT since diagnosis - question

Postby Robino1 » Fri Jan 05, 2018 9:05 am

mpbser wrote:I don't understand why you would be having a CT as surveillance when CTs aren't able to detect metastases to the peritoneum area. If I recall correctly, MRIs do.




When I went to the ER for the pain and distention in my belly, they did a CT scan and saw the seeding on my omentum and caking on my liver.

I've had one PET scan before starting chemo and 2 CT scans after starting. They do pick up peritoneal cancer. I've not had an MRI for the cancer.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: 1st CT since diagnosis

Postby rachel2017 » Fri Jan 05, 2018 10:04 am

SweetC80 wrote:
rachel2017 wrote:
SweetC80 wrote:Good Luck and hope the scan shows good response the treatment. Hopefully her CEA is a good marker for her since it has gone done so much. My mom's Onco always asked if we wanted to see the actual scan or just be told what was in it. She also has a health portal that her tests are uploaded to and are often there prior to the appointment so we are able to review and form our questions based off that. Her Onco would review the test results and how she is feeling and make recommendations for future treatment. Our biggest questions were always why X change and what are all the options and what is the goal of whatever change is being made, plus when is the next round of blood work and scans. He is also always available for questions if we think of something later, so make sure you know how to contact him between appointments if anything comes up. Please keep us posted!


i like the wa your mom’s doctor treat patient. May I ask how you found this oncologist? I would like to switch to another doctor, and already did a few 2nd opinion consul. Still have trouble to find a right one.


We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.



Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: 1st CT since diagnosis

Postby SweetC80 » Fri Jan 05, 2018 10:31 am

[/quote]We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.[/quote]


Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor[/quote]

Do you have the option of traveling for a second opinion, possibly Memorial Sloan Kettering Cancer Center in NYC or U Penn in Philly. Are you close and have tried John Hopkins? So much luck to you <3
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: 1st CT since diagnosis

Postby rachel2017 » Fri Jan 05, 2018 11:59 am

SweetC80 wrote:
We are fortunate enough to live close to a higher ranking cancer center. My husband actually works in the IT department at the cancer center prior to my mother's diagnosis and is familiar with many doctors and nurses. Her Onco was just assigned to her from her colorectal surgeon, but through talking w/ my husband and his coworkers who are vary familiar with all the doctors it's

agreed that she got a good one. Plus he was able to get her marked as a "VIP" so we can have her records reviewed by the powers that be to confirm they agree with treatment decisions (we've used this privilege twice) We have always trusted him and he is always open to discussion about options. I read here and online different options for stage IV CRC patients and he helps us understand why he does and doesn't want (or can't) pursue certain treatments or types of chemo.[/quote]


Your mom is lucky to have the right doctor. We live in metropolitan Washington DC area. Went to 3 local cancer centers. Still have hard time to find the right doctor[/quote]

Do you have the option of traveling for a second opinion, possibly Memorial Sloan Kettering Cancer Center in NYC or U Penn in Philly. Are you close and have tried John Hopkins? So much luck to you <3[/quote]
She is in John Hopkins now. We need to go to other place
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

User avatar
betsydoglover
Posts: 910
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: 1st CT since diagnosis - question

Postby betsydoglover » Fri Jan 05, 2018 6:30 pm

Rachel2017 -

Check out Dr. Cheryl Aylesworth in Silver Spring. She is my oncologist and is wonderful. Head of clinical trials at Holy Cross, very well connected at NIH/NCI. I could not imagine a better oncologist. Not sure where in DC you are, but it is at least worth talking with her.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rachel2017
Posts: 33
Joined: Tue Oct 17, 2017 9:17 pm

Re: 1st CT since diagnosis - question

Postby rachel2017 » Fri Jan 05, 2018 7:45 pm

betsydoglover wrote:Rachel2017 -

Check out Dr. Cheryl Aylesworth in Silver Spring. She is my oncologist and is wonderful. Head of clinical trials at Holy Cross, very well connected at NIH/NCI. I could not imagine a better oncologist. Not sure where in DC you are, but it is at least worth talking with her.

Take care,


Betsy,
We live in Rockville. Thanks a lot for the information. Will try to schedule the appt soon. Do you have any other recommendations?
DM 63. 11/16 colonoscopy (high dysplasia)
1/17 laparoscopic,6.5X4X3cm. Stage II. No chemo.
6/17 abdo pain. CEA 52. CT paracolic nodule 1.4X1.9cm
7/17 pet CT. Ascending colon 1.4X1.1cm SUV 2.4; midline scar 0.9cm SUV3.1
KRAS G12D
8/16/-9/26/17 Folfox 4 rounds
10/6/17 CT numorous perio seedings. ascending one 7cm; midline one 5.7cm.
10/16-1/5/2018 Folfox/avastin; 1/12/18 CT reviewed Slight progression
Stop chemo

ilovemyfrenchie
Posts: 12
Joined: Fri Nov 03, 2017 9:20 pm

Re: 1st CT since diagnosis - question

Postby ilovemyfrenchie » Mon Jan 08, 2018 4:40 pm

Thank you SweetC80 and everyone else for your reply and well wishes! My mom got her CT results back today and the doctor said she's responding really well to the chemo and her liver mets shrunk significantly. Unfortunately the results doesn't upload on her patient portal until 4 days later and still aren't up now.

Mpbser, I asked her oncologist the same thing because I was curious why my mom never had a PET or MRI done but she said she doesn't do MRIs because she already knows what she is looking for (the mets) and that the CTs will show it.

Robino1, just curious how did you know your peritoneal mets were shrinking? My mothers weren't found until the surgery for her colostomy and I asked the oncologist about it during her CT results today but she said if the liver mets shrunk the peritoneal mets definitely shrunk too. Confused
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/30/17 started Folfiri with Avastin (CEA 171)
3/18 CT = liver Mets shrinkage (CEA 7.9)

User avatar
Robino1
Posts: 454
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: 1st CT since diagnosis - question

Postby Robino1 » Mon Jan 08, 2018 5:09 pm

ilovemyfrenchie wrote:Thank you SweetC80 and everyone else for your reply and well wishes! My mom got her CT results back today and the doctor said she's responding really well to the chemo and her liver mets shrunk significantly. Unfortunately the results doesn't upload on her patient portal until 4 days later and still aren't up now.

Mpbser, I asked her oncologist the same thing because I was curious why my mom never had a PET or MRI done but she said she doesn't do MRIs because she already knows what she is looking for (the mets) and that the CTs will show it.

Robino1, just curious how did you know your peritoneal mets were shrinking? My mothers weren't found until the surgery for her colostomy and I asked the oncologist about it during her CT results today but she said if the liver mets shrunk the peritoneal mets definitely shrunk too. Confused


Just going by what my oncologists is getting from the report. I had significant seeding so maybe they are disappearing? The seeding could definitely be seen in the CT scan.

Good question and one I will try to remember to ask my oncologist.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

DarknessEmbraced
Posts: 3016
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 1st CT since diagnosis - question

Postby DarknessEmbraced » Wed Jan 10, 2018 12:35 pm

I hope your mother gets good scans!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17


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