3-Year Scan results

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
NZJay
Posts: 633
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

3-Year Scan results

Postby NZJay » Tue May 16, 2017 5:44 am

= 3 years and 6 months NED today.

Happy, to say the least. I am unsure of the stats, but I think this puts me in a pretty good position for long-term survival.

While these results can't take away my pains, fatigue, or (immediately) psychological glitches - I do feel a deep anxiety has lifted somewhat.

NZ standard dictates only 3 years of follow-up scanning, meaning this was my last. Regardless, I am strongly considering asking for a 4-year CT just for peace of mind.

CEA continues to sit around the 4.9-5.2 mark. Ongoing lower right quadrant tenderness.

My warmest and most grateful thoughts to everyone here :D

I shall now partake in some gin.

Jay
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

cmrl
Posts: 160
Joined: Mon Apr 21, 2014 8:39 pm

Re: 3-Year Scan results

Postby cmrl » Tue May 16, 2017 6:34 am

That's great news! I hear where you're coming from with asking for the 4 year scan, but hope you can allow yourself to celebrate this important milestone, and relax a bit.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal

User avatar
WriterGirl1969
Posts: 427
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: 3-Year Scan results

Postby WriterGirl1969 » Tue May 16, 2017 6:56 am

That is SO awesome, Jay!!!
You partake and I will do a happy dance for you from here. :D
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

stu
Posts: 574
Joined: Sat Aug 17, 2013 5:46 pm

Re: 3-Year Scan results

Postby stu » Tue May 16, 2017 7:51 am

Yippee. Enjoy .
Kind regards,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection

lpas
Posts: 972
Joined: Wed Nov 19, 2014 11:11 pm

Re: 3-Year Scan results

Postby lpas » Tue May 16, 2017 7:55 am

Woohoo!! Awesome, awesome news. Enjoy!
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS (A146T), TP53, SMAD4, ERBB2, pre-surgical CEA 1.0
2/15 to 7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass, rt ovary removed. Benign fibroid.
9/16: clean colonoscopy
3/17: clean CT
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6
Mom to a 3 & 5-year-old

User avatar
horizon
Posts: 1410
Joined: Tue Apr 12, 2011 10:10 pm

Re: 3-Year Scan results

Postby horizon » Tue May 16, 2017 8:27 am

Happy for you. Make sure it's some good gin!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Deb m
Posts: 344
Joined: Tue Jan 14, 2014 10:08 am

Re: 3-Year Scan results

Postby Deb m » Tue May 16, 2017 8:34 am

Thats great news. We were always told that the three year mark is a Hugh positive hurtle to reach and if you make it there ned, then your chances of being forever ned are extremely good!

I , however would say that being a t4, you should push for a four year and a five year scan. My husband was a t4 also, and at MDA they scanned him till he was just past the 5 year mark. He being 6years out now, does not even need blood work. They monitored him very closely till five years.

Go celebrate!

User avatar
NZJay
Posts: 633
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: 3-Year Scan results

Postby NZJay » Tue May 16, 2017 11:47 am

Deb m wrote:Thats great news. We were always told that the three year mark is a Hugh positive hurtle to reach and if you make it there ned, then your chances of being forever ned are extremely good!

I , however would say that being a t4, you should push for a four year and a five year scan. My husband was a t4 also, and at MDA they scanned him till he was just past the 5 year mark. He being 6years out now, does not even need blood work. They monitored him very closely till five years.

Go celebrate!


Do you recall why they decided T4 was justification for extended scanning? I may need to argue this with my onc, as we are 100% funded and tendency is to spend the absolute minimum.

My main reasons would be my tumour being noted as slow-growing, and the fact my CEA never goes much below 5.

Thanks!
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

User avatar
CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: 3-Year Scan results

Postby CRguy » Tue May 16, 2017 11:56 am

Keep racking up those milestones Jay !!!

I am with you though, and would push for a 4-5 year scan
I didn't start getting aggressive scanning until AFTER my met was resected ... kind of like after Elvis left the building !

If your CEA is not a marker ( me neither ) ask the docs what they think they will find if they don't even LOOK ?
Wait for the silence a bit and then tell them you would rather be OVER scanned than UNDER diagnosed.

JMO

Best wishes buddy
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Bev G
Posts: 5837
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: 3-Year Scan results

Postby Bev G » Tue May 16, 2017 12:07 pm

Congratulations, Jay. I'm so happy for you for your great news!
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

DarknessEmbraced
Posts: 2721
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 3-Year Scan results

Postby DarknessEmbraced » Tue May 16, 2017 12:50 pm

Wonderful news!
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

User avatar
NZJay
Posts: 633
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: 3-Year Scan results

Postby NZJay » Tue May 16, 2017 2:23 pm

CRguy wrote:Keep racking up those milestones Jay !!!

I am with you though, and would push for a 4-5 year scan
I didn't start getting aggressive scanning until AFTER my met was resected ... kind of like after Elvis left the building !

If your CEA is not a marker ( me neither ) ask the docs what they think they will find if they don't even LOOK ?
Wait for the silence a bit and then tell them you would rather be OVER scanned than UNDER diagnosed.

JMO

Best wishes buddy
CRguy


Cheers dude, yeah I definitely will be pushing for it. At the end of the day, I will probably pay for the scan myself if they refuse.

I've seen people here have statistically late recurrences, and to be honest I don't feel satisfied in my own mind that I can say "I'm cured; no more worries" just yet.

I like your strategy!! I will try it. I'll send you a virtual beer if you save me the $2000 scan fee :wink:
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

Deb m
Posts: 344
Joined: Tue Jan 14, 2014 10:08 am

Re: 3-Year Scan results

Postby Deb m » Tue May 16, 2017 3:05 pm

Our oncologist always told us that because my husband was a t4, cells could of escaped thru the colon wall which put him at high risk for recurrence. Colon cancer is slow growing, and assuming the worst , that cell were floating around his abdominal cavity he felt we needed to be monitored up to the five year mark. If you look at the survival rate of a stage IIbt4, which is what my husband was and compare it to a stage IIIt3, the stage III has a better prognosis. A t4 is a high risk feature, even in stage II. My husband also had an constant elevated baseline cea, so we couldn't count on a cea for detection at all. His main surveillance tool was the ct scan, so the doc was very insistent on going up to the five year mark. Since t4's are a high risk feature, I wouldn't think you would have problems with insurance. We never had any. I don't tell you this to discourage you. I remember our doc telling us that over 80% of recurrences happen before the three year mark. You are right to be feeling extremely good about things now, but would still do that four and five mark scan. Have your oncologist push for it with your insurance company.

Now, all that being said, go celebrate for this is a hugh milestone you just hurdled over!

deb

User avatar
NZJay
Posts: 633
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: 3-Year Scan results

Postby NZJay » Tue May 16, 2017 3:16 pm

Thanks Deb m! That is really useful. Hopefully my onc team will see it the same way, and if not then I'll make them.

I'm a stage IIIt4b, so in a whole different ballpark in terms of scary prognostics haha. Some people like to call it "stage 4 lite" so I am definitely not treating it flippantly.

Our health system is different and I do not have (nor, thanks to cancer, am I able to purchase!) health insurance. Our healthcare is all paid via our taxes, hence why we tend to get "minimum standard" of care. If we want "gold standard" or cutting-edge treatment, we have to pay $$$$.

But yes - definitely celebrating, whilst being pragmatic :mrgreen:
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

Deb m
Posts: 344
Joined: Tue Jan 14, 2014 10:08 am

Re: 3-Year Scan results

Postby Deb m » Tue May 16, 2017 3:18 pm

Good luck with it all,

deb


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



Who is online

Users browsing this forum: Bing [Bot], Bostonzj, jhocno197, kc1948, Shana, Yahoo [Bot] and 44 guests