Testing on Tuesday

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Talib
Posts: 20
Joined: Tue Dec 08, 2015 2:57 pm
Facebook Username: Tali Bellish
Location: Israel

Testing on Tuesday

Postby Talib » Sat Nov 18, 2017 11:59 am

Hi, I haven't been here for a while and I hope you all forgive me that I am not here when things are relatively well.
I am sorry about this.
On Tuesday I am due for scans and although so far everything has been clear I am very scared. I has been a year since my last scan and 7 months since I had a liver ultrasound.
I cannot understand why I am so terrified this time.
Nobody around me understands, as far as everyone is concerned I have no reason to worry. They think it was all over when I finished the chemo.
Thats why I am writing to you. I'm sure some of you understand why it's still a long time before I can be sure I am cured.

I can't sleep!! Tuesday is coming
colon cancer - June 2015
45 yrs old at diagnosis
stage III B- 2/32 lymph nodes positive
surgery - July 2015
chemo - FOLFOX August 15 - Feb 16
Feb 16 Pet CT - NED
Sep 16 CT - NED
Jan 17- CT - NED
May 17 liver ultrasound - clear
Nov 17 CT - NED

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Testing on Tuesday

Postby Aqx99 » Sat Nov 18, 2017 12:50 pm

I understand your nervousness. I'm due to have my first post-chemo scan shortly. We've been watching a couple of lung nodules that so far have been unchanged.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
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/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

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susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Testing on Tuesday

Postby susie0915 » Sat Nov 18, 2017 12:53 pm

I totally understand how your feel. I was diagnosed around the same time as you. I see my oncologist next Tuesday and will have bloodwork. So always a little nervous, even though my CEA has never been higher than 1. My next scan will be in January to check a tiny 4mm lung nodule that has been stable and oncologist believes is just scar tissue. I've always said, most people think when you finish treatment and are NED everything goes back to normal. Not only do they not realize the side effects you deal with from surgery, chemo, and radiation, they don't understand the anxiety of being tested every 3-6 months brings until it is determined you're NED again.

All you can do is go by how you feel, and knowing that all follow up scans and tests have been negative for recurrence, try not to worry. I know it is so easy to say. Hopefully, the further out we get from treatment and continue to have negative scans we will rest a little easier.
Last edited by susie0915 on Sun Nov 19, 2017 12:17 pm, edited 1 time in total.
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

Beckster
Posts: 191
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Testing on Tuesday

Postby Beckster » Sat Nov 18, 2017 12:59 pm

I am due for my 6 month scans in 3 weeks....already starting to get nervous. Like you, everyone thinks that I was "cured" after chemo and life goes back to normal. Just what I need...scans less than 10 days before Christmas!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.812/17-2.8
Clear Colonoscopy 10/17 :D

User avatar
susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Testing on Tuesday

Postby susie0915 » Sun Nov 19, 2017 12:18 pm

I guess all we can do is stay positive, and live our lives. It can be tough, and get into your head.
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

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Testing on Tuesday

Postby Lee » Sun Nov 19, 2017 3:40 pm

What you are feeling is normal. It's a scary time prior to testing. We are dealing with cancer here, not the common cold.

As others have said, just try an stay positive until you learn otherwise.

When I was going through treatment, I kept telling myself as long as I was learning something new each day, I was not going to be dying anytime soon. I helped get me through.

Good luck with Tuesday,

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!

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juliej
Posts: 2748
Joined: Thu Aug 05, 2010 12:59 pm

Re: Testing on Tuesday

Postby juliej » Mon Nov 20, 2017 5:42 pm

Talib, I think the reason scanxiety is so bad is because it’s not just fear of what could happen, but also remembrance of what has happened.

Everyone dreads getting a cancer diagnosis, but no one really know what it's like until it happens to them. Now that we've been through the depths of cancer hell, we want to stay as far away as physically possible from it. We remain hopeful, yet we also know we have no control. We just have to wait and see. And that's the hardest part.

Best of luck to you! You will be in my prayers tomorrow!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

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

Re: Testing on Tuesday

Postby DarknessEmbraced » Tue Nov 21, 2017 12:22 pm

I hope both of you get clear 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

Talib
Posts: 20
Joined: Tue Dec 08, 2015 2:57 pm
Facebook Username: Tali Bellish
Location: Israel

Re: Testing on Tuesday

Postby Talib » Wed Nov 22, 2017 7:12 am

Thank you all so much!!
The CT is clear!!! I am sooooo Happy.

thank you for being here I was going crazy and no one understood why.
When I got the results I was so happy and wanted to tell everyone but no one understand the significance. I think being clear for over two years is very significant after almost a year not being tested.
But everyone thinks I was cured the day I finished chemo..

A special hello to all the stage 3 just diagnosed: someone told me you will have about a year where cancer is your job and then you will be healthy and resume your life. I know it's not always true and as you see I was scared to be one of those for whom it's not true. But I do know that it is true for most so go to your jobs and good luck to all.

All my love to everyone,
You are just great!
Tali
colon cancer - June 2015
45 yrs old at diagnosis
stage III B- 2/32 lymph nodes positive
surgery - July 2015
chemo - FOLFOX August 15 - Feb 16
Feb 16 Pet CT - NED
Sep 16 CT - NED
Jan 17- CT - NED
May 17 liver ultrasound - clear
Nov 17 CT - NED

Beckster
Posts: 191
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Testing on Tuesday

Postby Beckster » Wed Nov 22, 2017 7:37 am

juliej wrote:Talib, I think the reason scanxiety is so bad is because it’s not just fear of what could happen, but also remembrance of what has happened.

Everyone dreads getting a cancer diagnosis, but no one really know what it's like until it happens to them. Now that we've been through the depths of cancer hell, we want to stay as far away as physically possible from it. We remain hopeful, yet we also know we have no control. We just have to wait and see. And that's the hardest part.

Best of luck to you! You will be in my prayers tomorrow!

Juliej


Julie,

I could not have said this better! So true!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.812/17-2.8
Clear Colonoscopy 10/17 :D

heiders33
Posts: 42
Joined: Sat Nov 04, 2017 11:08 am

Re: Testing on Tuesday

Postby heiders33 » Wed Nov 22, 2017 8:27 am

Congratulations! Great news! Everyone thinks I’m going to be “done” in a few months but I know that’s not true either. Glad to hear stories like this.
35 year-old female
May 2017: Dx at T3N2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

User avatar
susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Testing on Tuesday

Postby susie0915 » Wed Nov 22, 2017 8:51 am

Congrats on the clear scan. I saw my oncologist yesterday and graduated to six month checks. Got my bloodwork results this morning CEA <.5 and other numbers pretty good. Next is my scan in January. Have a great holiday.
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


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