Feeling scared about urgent pet scan

Please feel free to read, share your thoughts, your stories and connect with others!
sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Feeling scared about urgent pet scan

Postby sammer718 » Thu Apr 13, 2017 2:21 am

This is my first post. I just don't know who else to say these things too.

I was diagnosed with stage IIIc colon cancer in September 2015 at the age of 27. They removed a tumor that was blocking my lower sigmoid colon, along with part of my colon. They also removed several lymph nodes. Then I started 12 rounds of folfox and 5-fu chemotherapy in October 2015, finishing in March 2016. My first colonoscopy after chemo was clear, in July 2016. CT scan in October 2016 was also clear. My blood work has been good.

I just got a second CT scan and a bone scan done two days ago. I had been complaining of back pain since October 2016, and my oncologist had left it up to me if I wanted my second CT scan at 6,9 or 12 months. I am extremely anxious so I just decided to do it now.

So they told me the results yesterday. They stated all my organs are clear as well as my bones. But they found enlarged lymph nodes in my peritoneal cavity/abdomen. So, tomorrow I get my urgent pet scan. They said the results of that will determine if a biopsy is needed.

I am nervous and scared. It could be nothing - the NP said scarring, or inflammation, or due to recent GI distress, which I have had for the past two weeks. I basically am jumping to worst case scenario and am having a hard time being rational and positive.
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

jhocno197
Posts: 811
Joined: Mon May 11, 2015 9:33 pm

Re: Feeling scared about urgent pet scan

Postby jhocno197 » Thu Apr 13, 2017 12:06 pm

No advice, but hoping you have good scan results.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

sdino
Posts: 43
Joined: Tue Mar 28, 2017 5:32 pm

Re: Feeling scared about urgent pet scan

Postby sdino » Thu Apr 13, 2017 12:25 pm

Welcome sammer, its Ok to be scared. Im also scared for my wife - because of the unknowns. Get your results of your PET from your Onc, then methodically come up with a plan together with him... Hoping for the best.
Caregiver for Wife 52 yrs old
DX:11/16-CC sigmoid colon 3 cm, Lung Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 and 11/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17; 10/17 - 1.9, 11/17 - 2.6

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

Re: Feeling scared about urgent pet scan

Postby DarknessEmbraced » Thu Apr 13, 2017 12:57 pm

I hope you have good results!*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

thubler
Posts: 27
Joined: Tue Sep 27, 2016 9:22 am
Facebook Username: Ted Hubler

Re: Feeling scared about urgent pet scan

Postby thubler » Thu Apr 13, 2017 5:01 pm

Hello. I had a very similar situation. I was IIIb with 2 lymph nodes effected. I completed 12 rounds of Folfox with no real issues except having CDiff twice. I had a clear colonoscopy in December and my first post CT scan in February which showed an enlarged lymph node in my mesentery. I opted for an immediate PET scan which showed two enlarged mesentery lymph nodes with minimal uptake of the dye. My PET stated both nodes had little to no metabolic activity. Tried to do a biopsy but was told they were way too small. My oncologist wants to wait three months and rescan which is in June. He feels it's probably benign but I still worry. My oncologist claimed cancerous nodes will "light up" on a PET. Luckily mine did not. He feels they could be reacting to something else. Hopefully its the same case for you. Take a breath, Good luck and God bless...
III b CC diagnosed at 35 years old.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Colon resection May 2016.
2/41 lymph nodes positive.
Started Chemo June 2016 Folfox
Finished Chemo November 20, 2016
Clear Endoscopy and Colonoscopy 12/6/16
CT scan 02/07/17 enlarged mesenteric lymph node.
PET scan 02/15/17 Showed minimal uptake in two nodes, little to no metabolic activity. Too small to biopsy.
Stable CT scan 06/05/17
Stable CT scan 10/16/17
Port removed 11/03/17

sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Re: Feeling scared about urgent pet scan

Postby sammer718 » Thu Apr 13, 2017 5:21 pm

Thanks all.

It's frustrating to always have the worry of recurrence in the back of my mind, even when tests or blood work comes out ok.

Two more hours until the scan - and then, I can eat!
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

zx10guy
Posts: 146
Joined: Mon Jan 07, 2013 12:54 pm

Re: Feeling scared about urgent pet scan

Postby zx10guy » Thu Apr 13, 2017 8:04 pm

I'm right there with you on this. In my case, it's the reverse. My CEA is high but so far all my scans have come back clear. So I get to wait a month to have a repeat CEA to see if it's the same, lower, or climbing. I would normally be jumping for joy with clear scans but the CEA is ruining the party. Since the elevated CEA, over a two week span, I've had another CEA test to rule out lab error, CT with contrast of chest/abdomen, small bowel capsule endoscopy, PET/CT skull to thigh, and a colonoscopy. All the diagnostics have come back clear so there's no current explanation on why the big CEA spike.

sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Re: Feeling scared about urgent pet scan

Postby sammer718 » Fri Apr 14, 2017 1:05 am

That really sucks. It's like you think you're all good feeling healthy and then all the tests have to be done at once for something that doesn't seem that crazy.
It's good to hear your scans are clear, Hopefully your Cea will drop.
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

BUD2016
Posts: 55
Joined: Sat Sep 10, 2016 3:25 pm

Re: Feeling scared about urgent pet scan

Postby BUD2016 » Fri Apr 14, 2017 3:47 am

good luck sammer718 with your PET scan and hope all is well.

My mom's CEA just hiked before 11th treatment, next week to be re-tested, so having a bit of a worrying Easter.

We are trying not to worry until we have more information, but sometimes it is not that easy... Best wishes to you and everyone on this board.
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA
11/2017: left us

Lydia666
Posts: 651
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Feeling scared about urgent pet scan

Postby Lydia666 » Sat Apr 15, 2017 12:25 pm

How did it go?
Oct 2012- thyroid cancer
June 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
May 2016- clear CT
July 2016- ileo reversal
August 2016- DCIS breast cancer
Oct 13,2016 - lumpectomy
Dec 2016 - clean scope
Feb 24,2017- prophylactic double mastectomy
April 2017- clean scope
May 2017 -clean CT
Sept 2017 - clean lung CT
Mom to 3 & 6 yrs kids (6mo & 3.5yrs in 2015)

sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Re: Feeling scared about urgent pet scan

Postby sammer718 » Sat Apr 15, 2017 10:02 pm

They saw the lymph node light up on the scan, so next step is needle biopsy. My oncologist said its next to my kidney and she isn't sure if they can get to it for the biopsy. She said she cannot think of what else would make the node enlarged besides cancer. Chemo is likely and she said "the prognosis we talked about earlier will be different" and I didn't ask for more details because I was scared.

I'm also getting an mri of my pelvis because there were lit up areas there, but that can happen on women.

Did blood work yesterday but don't know the results.
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

TXLiz
Posts: 228
Joined: Thu Sep 22, 2016 3:31 pm

Re: Feeling scared about urgent pet scan

Postby TXLiz » Sun Apr 16, 2017 7:46 pm

I am so sorry, Sammer. I wish this horrid disease would go away and leave us all alone!

This could be just a bump in the road, to be dealt with, and moved on from. I hope it is! Please keep us updated.

Good thoughts and prayers to you.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Julie YW
Posts: 170
Joined: Tue Aug 27, 2013 2:25 am
Facebook Username: Julie.yip-williams

Re: Feeling scared about urgent pet scan

Postby Julie YW » Sun Apr 16, 2017 11:48 pm

You should do HIPEC before chemo if possible. Chemo is not good at reaching things on the peritoneum. Scans can also miss peritoneal disease so surgery is best to really know what's going on. Ask about this. Good luck.
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/

sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Re: Feeling scared about urgent pet scan

Postby sammer718 » Wed Apr 19, 2017 7:33 pm

I saw my oncologist today. The enlarged lymph node is tucked away with my kidney and too close to my aorta for them to remove it. The biopsy is scheduled for Monday but she wants to do chemo either way. The stupid 5 fu pump again, along with avastin and irinotecan. Then possibly radiation. She mentioned being in maintenance chemo indefinitely.
I also got a pelvic Mri to determine if the area on the pet scan that lit up is a mass or my bowel.
My CEA was 1.9 in February, now it's 3.2. Really hard to be hopeful and positive right now.

Right now I live in Hawaii. My family is in New York so I would likely move back home for this. I'm working on getting my medical records to my oncologist in New York for his opinion.

Just feeling anxious and almost like I'm in a fog at this point.
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

User avatar
chrissyrice
Posts: 1151
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Feeling scared about urgent pet scan

Postby chrissyrice » Wed Apr 19, 2017 9:25 pm

I had a lymph node removed that was closed to the aorta... had surgery at a major NCI cancer center here in Atlanta at Emory University Hospital.

If you can get to NY and consult with a major hospital that handles more complex surgeries might be a good choice.

Chrissy
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], LeonW, Pemba and 41 guests