Freaking out about reoccurrence!

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NoFear32
Posts: 31
Joined: Mon Feb 15, 2016 11:53 pm

Freaking out about reoccurrence!

Postby NoFear32 » Tue Feb 14, 2017 12:34 pm

I know I shouldn't be freaking out, but I can't help it.

In November my chest x-ray showed a 6mm spot on my lung. My Onc scheduled me for CT chest scan and blood work that I had done this past week. I find out the results from this scan on Thursday.

Today I received results from blood work and CEA has risen from 0.9 to 1.4. My CEA has not changed ever since I finished chemo Sept 2015.

I'm freaking out that I have a lung met now and what I'm going to find out from the Onc on Thursday! I had such a hard time with chemo and my colectomy surgery the first go around, but at least back then I was 'naive' and didn't know what to expect. Now that I've been through all that (and survived it!) I'm finding it hard to not freak out about having a possible reoccurrence and going through it all again.

Any tips on coping with reoccurrence worries/stress?! :cry:
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Freaking out about reoccurrence!

Postby lpas » Tue Feb 14, 2017 1:35 pm

Try not to get too freaked out. It would be unusual to see lung mets before liver issues in someone with colon cancer (rectal tends to be the other way around). Not to mention, benign lung thingies are very common in the general population. I have one in the 4-5mm range that's been unchanged since diagnosis.

Your CEA is quite low (lower than mine!) and still very much in the normal range. If you take a look at my signature, I've recorded all my CEA readings since diagnosis. As you can see, mine jumped from 1.3 up to 1.8 and then 2.1 before heading back down again with no clear explanation. Have you been sick at all? Any kind of inflammation in the body can cause CEA to rise. There are also some supplements than can impact CEA.

I'm prone to periodic recurrence freak-outs myself and the best solution I've found is to stay busy. Worry won't change the outcome, as I'm sure you know.

Good luck and please keep us posted!
Last edited by lpas on Tue Feb 14, 2017 7:23 pm, edited 1 time in total.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

NoFear32
Posts: 31
Joined: Mon Feb 15, 2016 11:53 pm

Re: Freaking out about reoccurrence!

Postby NoFear32 » Tue Feb 14, 2017 1:52 pm

Thanks for the reply and kind words. :D

It's hard to handle this kind of stress/anxiety and I know that only people on this board will really understand what it's like. It's hard to keep a positive outlook all the time, but I know I have to keep fighting to stay positive.
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

User avatar
SEWHAPPY
Posts: 86
Joined: Tue Nov 15, 2016 4:25 pm

Re: Freaking out about reoccurrence!

Postby SEWHAPPY » Thu Feb 16, 2017 3:58 pm

Here is hope that your results were good today or that you were able to start developing a good plan. Best wishes, hugs and prayers! Laurie
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
12 rounds FOLFOX done 6/16/17.

jens22
Posts: 1013
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Freaking out about reoccurrence!

Postby jens22 » Thu Feb 16, 2017 7:40 pm

I am the queen of Freak out so I know how you feel...have you b een having yearly Cat scans? When SOmething is that small they usually watch it and look at previous scans. I had a 4mm spot that the next scan said multiple small nodules and i freaked...Turned out they were there for 4 years and never grew. This radiologist was a little more descriptive in his Reports. Stay calm...Don't pre plan.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Freaking out about reoccurrence!

Postby Lydia666 » Tue Feb 21, 2017 7:47 pm

NoFear32 wrote:Thanks for the reply and kind words. :D

It's hard to handle this kind of stress/anxiety and I know that only people on this board will really understand what it's like. It's hard to keep a positive outlook all the time, but I know I have to keep fighting to stay positive.

Did you get a result?
Oct 2012- thyroid cancer
June 19, 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
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

NoFear32
Posts: 31
Joined: Mon Feb 15, 2016 11:53 pm

Re: Freaking out about reoccurrence!

Postby NoFear32 » Sat Jul 01, 2017 12:42 am

Sorry for the late response - the good news is just that...it turned out to be nothing to worry about :)

So as of today (2+ years out), still NED and trying to put cancer behind me :)



Lydia666 wrote:
NoFear32 wrote:Thanks for the reply and kind words. :D

It's hard to handle this kind of stress/anxiety and I know that only people on this board will really understand what it's like. It's hard to keep a positive outlook all the time, but I know I have to keep fighting to stay positive.

Did you get a result?
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Re: Freaking out about reoccurrence!

Postby thubler » Sat Jul 01, 2017 8:37 pm

Awesome news! Congrats!
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20,02/18/21,05/24/22
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20, 01/05/21,03/07/22
Deported 11/03/17

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Freaking out about reoccurrence!

Postby Lee » Sat Jul 01, 2017 10:40 pm

Yes, I agree, congratulations on your continued NED status. Just FYI, most people CEA will bounce around a bit. It's an upward trend they are looking for.

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 - 16 years and counting!


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