Upcoming Scans

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Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Upcoming Scans

Postby Swirdfish » Fri Sep 29, 2017 2:53 am

Hello Fellow Warriors,

So I've got my very first 6 monthly scans very shortly, flying out of work early for these. Initially my ONC said that they just wanted to ultrasound my liver. I argued with him about this cancer going to the lungs first etc etc, so under my wishes he put me in for also a chest x-ray.

Usual blood test including CEA which isn't a good indicator for me.

What about local recurrence? Is the above a good means of detecting early or should I be more aggressive?

Is there anything else any of you would also push for to keep this nasty beast at bay.

Best Wishes

Fish
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Upcoming Scans

Postby AbbyDoo » Fri Sep 29, 2017 5:48 am

To me it sounds like there slacking,
I get a ct scan with contrast every 6 months. I was getting blood work done every 3 months for the first year.
I would really push for a ct scan.. My first scan after chemotherapy showed I had pulmonary embolism that scan probably saved my ass.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Upcoming Scans

Postby JJH » Fri Sep 29, 2017 6:25 am

Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

User avatar
CRguy
Posts: 9317
Joined: Sun Feb 10, 2008 6:00 pm

Re: Upcoming Scans

Postby CRguy » Fri Sep 29, 2017 12:30 pm

Hey Fish

I am kind of back at the same point you are getting to.
I am not scheduled for any CTs ( I always had Chest-Abdomen-Pelvis numerous times as Stage IV ) because I am back with my family doctor and outta' the big center.
The plan we have concocted, which may shed some light for your situation, Summary :
( and you can read all the details in the signature link to my ongoing update topic )

chest and abdominal xrays ( multiple views ) and abdominal / liver ultrasound
continued general blood tests including CEA ( not a marker for me ) CA19-9, LDH, liver enzymes and whatever she thinks needs checking
OR I ask her for.
(( I have a VERY good doctor who is always supportive of my plans to be aggressive in follow up ))

Now you are not Stage IV = good for you !
BUTT I think your best chance of staying ahead of the game is to be proactive and push your docs for suitable imaging / monitoring.

I would think your docs should be on board with increased monitoring for the first 3 years at least.
If not ... find another doctor JMO.

BTDT and that is what I DID !
after my lung met was first missed on CT .... I did xrays / ultrasounds / CAP CT scans and found a new family doctor and new Onc.

My philosophy is very simple --->>> My life = MY DECISION !!!!

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

SweetC80
Posts: 71
Joined: Fri Sep 01, 2017 1:28 pm

Re: Upcoming Scans

Postby SweetC80 » Fri Sep 29, 2017 2:42 pm

Even before my mother was stage IV she was always given a full CT scan, and obviously now that she is they are. She was often told that she had just as much risk of a pelvic recurrence as finding liver or lung mets. She did have a very low tumor that broke through the anal wall and a fisure to her uterus, so I don't know if the fact it basically touched so much made that more of a concern for her over other rectal cancer patients or if it is generally an increased risk.
Mom's history
68yo at diagnoses
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum and Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met and suspicious 7mm Lung Nodule CEA 197
9/17 Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 Met growths, Liver 10cm and Lung 8mm CEA 425
12/17 Onco Apt to discuss options after treatment for abscess. Mom's not giving up

Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Re: Upcoming Scans

Postby Swirdfish » Fri Sep 29, 2017 4:33 pm

Thanks all.

I wouldn't say I'm focused on the scans but I'm trying to establish a suitable for me method of determining if im still NED that i think is sufficient enough.

For some reason I'm not happy with what they have in place. I think it's lacking substance to say.

Also I eat very well and exercise majority of the week. Cardio and weights.

I will approach my ONC with the above knowledge or my surgeon for consideration.

Rectal cancer has a high local recurrence rate so why dont they scan for it?

Seems unsuitable to me.

Will CT scans every 6 months be too much radiation? Cant use MRI. I've already had a good fair share of radiation.

As CRguy said maybe imaging at different directions.

Stress isnt an issue with my life even as an engineer. Been in the job along time now. 8)
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Re: Upcoming Scans

Postby Swirdfish » Fri Sep 29, 2017 4:38 pm

CRguy wrote:Hey Fish

I am kind of back at the same point you are getting to.
I am not scheduled for any CTs ( I always had Chest-Abdomen-Pelvis numerous times as Stage IV ) because I am back with my family doctor and outta' the big center.
The plan we have concocted, which may shed some light for your situation, Summary :
( and you can read all the details in the signature link to my ongoing update topic )

chest and abdominal xrays ( multiple views ) and abdominal / liver ultrasound
continued general blood tests including CEA ( not a marker for me ) CA19-9, LDH, liver enzymes and whatever she thinks needs checking
OR I ask her for.
(( I have a VERY good doctor who is always supportive of my plans to be aggressive in follow up ))

Now you are not Stage IV = good for you !
BUTT I think your best chance of staying ahead of the game is to be proactive and push your docs for suitable imaging / monitoring.

I would think your docs should be on board with increased monitoring for the first 3 years at least.
If not ... find another doctor JMO.

BTDT and that is what I DID !
after my lung met was first missed on CT .... I did xrays / ultrasounds / CAP CT scans and found a new family doctor and new Onc.

My philosophy is very simple --->>> My life = MY DECISION !!!!

Best wishes
CRguy


Thanks bud.

I'll mention your outline and try get a better response.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

User avatar
mypinkheaven
Posts: 428
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Upcoming Scans

Postby mypinkheaven » Fri Sep 29, 2017 8:26 pm

JJH wrote:
Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".





JJH, maybe you could complete your signature. It would be interesting to know your stage, location, treatment, etc.
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Re: Upcoming Scans

Postby Swirdfish » Sat Sep 30, 2017 3:33 am

JJH wrote:
Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".


Appears to be a very basic website with generic information. Perhaps I didn't look at it long enough. I already do majority of it.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Upcoming Scans

Postby DarknessEmbraced » Sun Oct 01, 2017 8:15 am

I would push for scans too. I have been getting yearly ct scans and blood tests every 3 months since my surgery in 2014. Good luck!*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

Lee
Posts: 5287
Joined: Sun Apr 16, 2006 4:09 pm

Re: Upcoming Scans

Postby Lee » Sun Oct 01, 2017 3:55 pm

I believe you have been given some great advice, butt just wanted to wish you "good luck" with your upcoming scans.

May you ALWAYS reside in NEDville,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Re: Upcoming Scans

Postby Swirdfish » Sun Oct 01, 2017 4:32 pm

Thankyou all.

Thanks Lee.

It's tomorrow. I'm not too worried at all I think it's all going to be a big thumbs up.

Yes ill still be getting my yearly CT scans. I just think the 6 monthly scans are to say abit light.

Thanks all.

Good luck.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

User avatar
dianetavegia
Posts: 2633
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Upcoming Scans

Postby dianetavegia » Fri Oct 06, 2017 3:24 pm

Next week will be my first time in 9 years not to have CT or CT/MRI or Pet scans every 6 months or sooner. I'm going to a once a year scan schedule with CEA twice a year. People will say 'CEA is not a good indicator for me' because their CEA was low, but that's not correct. My CEA went to 4.4, 6.4 six months later and then 8.4 (day of surgery) when I had a liver met that was only 1.5 cm. I consider that a good indicator AND lower CEA's tend to be found in people with less aggressive disease.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Eight yrs, 11 months since original dx. Five yrs. 7 months post liver resection. NED November 2017!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

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susie0915
Posts: 531
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Upcoming Scans

Postby susie0915 » Fri Oct 06, 2017 3:39 pm

dianetavegia wrote:Next week will be my first time in 9 years not to have CT or CT/MRI or Pet scans every 6 months or sooner. I'm going to a once a year scan schedule with CEA twice a year. People will say 'CEA is not a good indicator for me' because their CEA was low, but that's not correct. My CEA went to 4.4, 6.4 six months later and then 8.4 (day of surgery) when I had a liver met that was only 1.5 cm. I consider that a good indicator AND lower CEA's tend to be found in people with less aggressive disease.

How are you feeling about going to yearly scans? It's a good thing because it means you are doing well and cancer free, but the scans can give peace of mind. I have my six month scan in a week. Always start to get a little anxious, so when I get to yearly scans will probably be good for me. Congrats on graduating to yearly scans. Does your doctor consider you cured?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Swirdfish
Posts: 271
Joined: Sun Jun 19, 2016 3:57 am

Re: Upcoming Scans

Postby Swirdfish » Fri Oct 06, 2017 8:11 pm

Well I did the ultrasound and xrays but for the life of me I can't stop myself asking them if they saw anything. However I'm not too worried. I'm positive its all good come monday when i see the onc
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17


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