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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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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

Eleda
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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 colo for intermittent rectal bleeding over the Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV
JAN 3RD started 1650mg Zelda 2xday, concurrent with 28 radiation

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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 3 months since my original dx and Six years post liver resection.
NED April 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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

Caat55
Posts: 284
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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

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Shana
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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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

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 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

orlar
Posts: 46
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 5/15/17 Right Hemi colectomy (cecum) 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D mut.
2/18 PET=more disease, liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18 16.9
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

lovelife789
Posts: 70
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 Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

Writingdoc2
Posts: 7
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
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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: 1243
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 NED

Lotus
Posts: 29
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
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
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
09/2016 . Hypothyroid -hashimotos


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