Scanxiety: Anyone else having testing now?

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wwroam
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Re: Scanxiety: Anyone else having testing now?

Postby wwroam » Wed Mar 28, 2018 12:43 am

I hate to say it but I have never suffered from scanxiety.
In fact now that I have another oncologist for my NSCLC I hit him up for a script for CEA testing since that was what set off the alarms 12 months ago.
I would strongly urge others to continue with CEA testing long after the 5 byear mark. It can be very handy.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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Shana
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Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Wed Mar 28, 2018 1:01 am

wwroam wrote:I hate to say it but I have never suffered from scanxiety.
In fact now that I have another oncologist for my NSCLC I hit him up for a script for CEA testing since that was what set off the alarms 12 months ago.
I would strongly urge others to continue with CEA testing long after the 5 byear mark. It can be very handy.


Smart suggestion and I hope you keep on top of things. I actually feel better getting scanned every 3 months since I'm in active treatment but those monthly CEA numbers get me anxious. It reminds me of watching the scale when weight gain used to be an issue!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Eleda
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Location: Ireland

Re: Scanxiety: Anyone else having testing now?

Postby Eleda » Wed Mar 28, 2018 2:13 am

Ive a scan wed and colonoscopy to see how much rhe lesion has shrunk enough prior to surgery next month to see if I can avoid a permanent colostomy bag,,, abd how invasive the surgery will b..........
The restless nights,have started already
My normality is now over then I think.......
Im on the other side of chemoradiation and got out of it prety good so far

Now begins the real stuff :o
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

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dianetavegia
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Re: Scanxiety: Anyone else having testing now?

Postby dianetavegia » Wed Mar 28, 2018 9:06 am

I have my CEA done every 6 months and CT/ MRI for 9 years. We were going to skip the scans last time because it's been 6 years since my liver resection but my CEA was slightly elevated. Scans were clear.

Studies show that 5 years is a good time for COLON but rectal should be followed for up to 10 years. I was colon cancer. My liver met was found at 3 years and was smaller than a dime.

Blows my mind. My onc told me a year ago that my chance of ever getting cancer again (CRC) was nearing 3% which is the same as the general public. I told him the studies actually say 6 years, 7 months so that would be November 2018. Still, 9 years with no growth of the four tiny lung nodules found at dx and six years since my tiny liver met was removed............
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

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

recruiter
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Re: Scanxiety: Anyone else having testing now?

Postby recruiter » Wed Mar 28, 2018 12:15 pm

As much as I try to avoid it, absolutely. My scan is tomorrow, results on Tuesday - I always get a weekend to putter around the house and convince myself that it's time to buy a cemetery plot.

This one, though, is a little different after the set-to with Cigna, my insurance company and specialty pharmacy. Had been on Xeloda for nine months - 500 mg pill three times a day - when the script expired in January.

Imagine my surprise when the renewed script from my doctor arrived calling for 3 pills twice a day - twice the dosage I was taking.

I immediately went to the doc and asked for a clarification. I was supposed to be taking 3 pills twice a day for the entire period, but Cigna screwed up the dosage. The docs office says their pharmacy is notorious for doing that, sometimes totally on their own.

So ... after a month or so of the right dosage, it's going to be interesting to see if there's any noticeable differences on the CT. Certainly been some increased side effects. I don't know if a month is long enough for that to happen.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

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Shana
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Re: Scanxiety: Anyone else having testing now?

Postby Shana » Wed Mar 28, 2018 12:35 pm

recruiter wrote:As much as I try to avoid it, absolutely. My scan is tomorrow, results on Tuesday - I always get a weekend to putter around the house and convince myself that it's time to buy a cemetery plot.

This one, though, is a little different after the set-to with Cigna, my insurance company and specialty pharmacy. Had been on Xeloda for nine months - 500 mg pill three times a day - when the script expired in January.

Imagine my surprise when the renewed script from my doctor arrived calling for 3 pills twice a day - twice the dosage I was taking.

I immediately went to the doc and asked for a clarification. I was supposed to be taking 3 pills twice a day for the entire period, but Cigna screwed up the dosage. The docs office says their pharmacy is notorious for doing that, sometimes totally on their own.

So ... after a month or so of the right dosage, it's going to be interesting to see if there's any noticeable differences on the CT. Certainly been some increased side effects. I don't know if a month is long enough for that to happen.


Wow on the dosage discrepancy! I hope the correct dosage will really kick ass, sounds like you've had success at the lower dosage already. Good luck with your scan tomorrow!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Caat55
Posts: 545
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Re: Scanxiety: Anyone else having testing now?

Postby Caat55 » Wed Mar 28, 2018 12:59 pm

Hope and prayers for all of us.
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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Wed Mar 28, 2018 1:09 pm

Caat55 wrote:Hope and prayers for all of us.
S


Amen to that!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

Aqx99
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Re: Scanxiety: Anyone else having testing now?

Postby Aqx99 » Wed Mar 28, 2018 3:58 pm

I never had scanxiety until recently. I had a CT scan last week. My oncologist called me yesterday to tell me that my thymus is enlarged and she wants me to go for a PET scan. I'm nervous as hell about the PET scan.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
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 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Scanxiety: Anyone else having testing now?

Postby orlar » Wed Mar 28, 2018 7:47 pm

Scanxiety, Oh yeah! Mines next Tues. and since every scan to date has been worse than the one before, I usual dread it. Lately I feel less pain and my last CEA test dropped from 43 to 16.9 in the last month or so. Something working??? Anyways, I choose to look forward to this one and think positive thoughts. The glass is half full! Good scans to all!

Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

lovelife789
Posts: 114
Joined: Thu Aug 24, 2017 5:28 am

Re: Scanxiety: Anyone else having testing now?

Postby lovelife789 » Thu Mar 29, 2018 2:44 am

Hi Diane!

I got my scan result back! It's all clear, no lesion, nothing bad....but the report did say I have a 2.5cm ovarian cyst. Some cysts are potentially cancerous (we certainly know it's not cancerous right now because it didn't lit up on PET scan), so I don't know what to feel about the cysts... :roll: My CEA is absolutely normal.

I hope yours are fine!!! :D
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

Writingdoc2
Posts: 8
Joined: Mon Jul 25, 2016 8:41 pm

Re: Scanxiety: Anyone else having testing now?

Postby Writingdoc2 » Thu Mar 29, 2018 7:12 am

Aqx99 wrote:I never had scanxiety until recently. I had a CT scan last week. My oncologist called me yesterday to tell me that my thymus is enlarged and she wants me to go for a PET scan. I'm nervous as hell about the PET scan.


You might have thymic rebound which can occur after chemo...it can light up on PET, too, but is benign. You can Google it as there's quite a bit of literature on it. Good luck!
Diagnosed June 2015, Stage 3C
12 rounds of Folfox, 8/15-2/16
Recurrence to abdominal wall, uterus, ovary, and fallopian tube, July 2016
HIPEC, Sept. 2016, NED
Irinotecan (clean-up), 11/16-4/17
Recurrence in abdominal wall scar, 7/17
HIPEC #2, Oct. 2017

DarknessEmbraced
Posts: 3186
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scanxiety: Anyone else having testing now?

Postby DarknessEmbraced » Thu Mar 29, 2018 8:48 am

I hope everyone's scans go well and that you all get good news!*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

mymom
Posts: 1260
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Scanxiety: Anyone else having testing now?

Postby mymom » Tue Apr 03, 2018 9:53 am

Thinking of you today!
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

Lotus
Posts: 46
Joined: Thu Mar 29, 2018 10:03 pm

Re: Scanxiety: Anyone else having testing now?

Postby Lotus » Tue Apr 03, 2018 7:42 pm

I’m praying too, for you Diane. Please let us know the result. There is power in prayer and healing thoughts
female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan no distant metastatic disease
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
10/24/18CEA 0.9
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy


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