5 years NED, now what?

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 743
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

5 years NED, now what?

Postby Bob_Weiss » Sat Feb 14, 2015 9:05 am

I recently completed another 6-month follow-up exam and since I'm now past the 5 years NED point from surgery, my oncologist suggested I now can stop seeing him; or if I wish I can see him every 9 months. I think I'll stop seeing him, because these follow-up exams are only about 10 minutes and do not seem productive (although the oncologist is very pleasant and seems competent).

I'm not sure what to do next. I realize that a recurrence or a new tumor can occur at any time, and I will always be at higher risk than someone with no cancer history. What do others here do in this circumstance?
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 5 years NED, now what?

Postby DarknessEmbraced » Sat Feb 14, 2015 9:20 am

Congratulations on 5 years NED! :D I can't give advice on what to do since I'm only almost 3 months out from my colon resection and have only seen my oncologist once. I'm sure that there are others on here who will be able to help.
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
Posts: 666
Joined: Tue Dec 30, 2014 2:34 am

Re: 5 years NED, now what?

Postby MamaN » Sat Feb 14, 2015 12:23 pm

Congrats on Ned. In aug it will be my five year mark ....but he said I still need to see him yearly. I just wish I could truly be done with crap! Sorry for vent . Maybe your Gp can keep a closer eye on you ? They can run cea test to and order scans if you have problems.
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc

Posts: 101
Joined: Sun Feb 09, 2014 8:01 pm
Location: FL was RI

Re: 5 years NED, now what?

Postby Bat-Mom » Sat Feb 14, 2015 3:54 pm

Seeing that you are looking for advice, if I were you I would have one hell of a party and maybe book a vacation.

I think I would want my cea level checked and of course pretty frequent colonoscopies and maybe a scan every now and then. I would think a primary could order those.
54 y/o
10-2013 colonoscopy
11-2013 colon resect
12-2013 stage 3b results are in 4 of 11 LN
12-2013 - 5-2014 folfox
9-2014 cea 1.7 12-2014 CT clear cea 1.7 3-2015 cea 1.6
6-2015 new doc new lab. Cea now 3.9???

User avatar
Posts: 10140
Joined: Sun Feb 10, 2008 6:00 pm

Re: 5 years NED, now what?

Postby CRguy » Sat Feb 14, 2015 4:19 pm

the drive for Five ... well done buddy !

JMO, don't know what the exact protocol is where you are ... BUTT I have prolonged my "contact" with the major Cancer Agency where I was treated for the simple reason all my scans and specialized tests get done there and getting referrals back into their system is tougher than staying "in",
in the first place.

I have grown to prefer stability in my treatment teams, so unless things change in June I will push to have follow ups continue there. I know they love to kick us out when "they" think we are good to go and a GP can order tests and refer as well ... but we also risk falling through the cracks if we are not vigilent and proactive.

Like I said JMO.

Best wishes starting the next 5 !
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Posts: 414
Joined: Wed Aug 20, 2014 8:13 am
Location: San Jose, CA

Re: 5 years NED, now what?

Postby meatie » Sat Feb 14, 2015 6:10 pm

Bob_Weiss wrote:I'm not sure what to do next. I realize that a recurrence or a new tumor can occur at any time, and I will always be at higher risk than someone with no cancer history. What do others here do in this circumstance?

You should consider going to the Disneyland!!!!
Mother DX @59 8/14
cln+lvr res 9/14, stage 4
FOLOX+Avs 12-rd 10/14 to 4/15
Reoccurrence, KRAS mutant 11/15
Folfiri 18-rds 11/15-8/16
FOLFIRI with Ramicirumab 28-rds 8/17-9/18
Regorafenib 10/18-10/19
Lonsurf 10/19 onward

Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: 5 years NED, now what?

Postby Ron50 » Sat Feb 14, 2015 7:44 pm

Hi Bob,
Congratulations on the five years. My surgeon wanted to see me for six years and it was only after a complete set of tests ie ct scan and full bloods that he declared me cured of the stage 3 c tumour that I had removed. My oncologist was not interested in me post chemo , he handed it back to the surgeon. My GI still does regular scopes on me , the last was two years ago and I am due again in nov 2016. Jan 22 2015 was the end of year 16 and the start of year 17 of survival. My best wishes for your continued good health, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Posts: 5962
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: 5 years NED, now what?

Postby weisssoccermom » Sat Feb 14, 2015 9:22 pm

When I reached my 5 year mark (from date of last treatment), I voluntarily quit seeing my oncologist...specifically for the reasons you mentioned. It was a good 30 minute drive, plus at least a 15 minute wait just to get into a room and then, I often felt like I was the one who could get 'pushed back' for a more important patient....so oftentimes it certainly felt like I was sitting in that room for over an hour. What was most disconcerting was that the whole visit wasn't any more than 5-10 minutes.

A few years prior to this, I started having my GP run my CEA and CHEM panel...making certain that the results were sent (usually by me) to my surgeon and to my oncologist. My GP also ordered my scans as well....basically, the onc did nothing but up until my 5th year...I was content to just 'go with the flow' and continue seeing my onc. After that 5 year mark, when my insurance started balking at scans anyway, and since my onc had retired (he had been dxd with either leukemia or lymphoma....I never remembered which) I just said enough. The onc practice tried to get me to start up with a new onc but I politely refused.

In April, I will be 8 years from my last treatment and in June....it will be 9 years since my dx. I still have my CEA drawn once a year at my yearly physical, and I still see my surgeon every 9 months or so for a rectal only flex sig (unless I'm scheduled for a scope....then I get to skip the flex sig). For me, my CEA has never been reliable so I'm really not sure why I am having it tested but....they're taking my blood anyway for all the other tests that are run so why not? My last CT was an abdominal/pelvic only....done at 5 years from dx. Insurance balked at the chest part of the CT and no longer will routinely approve of them.

IMO, if you can have your GP run your blood work and/or order your scans and if your surgeon will do your scopes or any other tests, my take is ditch the onc (only if you are comfortable with it) but just make sure to have some doc who is 'in charge'. My GP was fine with this with the understanding that IF something was awry with the tests....back to the onc I would go.

Congrats on reaching the FIVE year mark.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit

Re: 5 years NED, now what?

Postby Sleen » Sat Feb 14, 2015 9:57 pm

You party, dude. You party!
OK and also get colonoscopies and check in with the doc every 9 mos. or so...but mainly, I think you party.
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2014 confirmed stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: 5 years NED, now what?

Postby Delinda2 » Sat Feb 14, 2015 11:45 pm

What a wonderful problem to have!! So very happy for you! Sounds as if you've gotten good advice here but I just had to chime in to say whoo hoo! Enjoy NEDsville my friend. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: 5 years NED, now what?

Postby Cj51 » Sun Feb 15, 2015 10:46 am

NED!!! Congratulations.
I'm coming up on 5 years this April. I will have one more lung/pelvic CT scan this year and then my Onc will have me see my GP for bloodwork. My surgeon will continue to scope me. I was offered the option of staying with my onc for the bloodwork. I like him very much, but it's 45 minute drive to his office and a 5 minute drive to my GP's office, so it'll be an easy choice.

DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

Posts: 792
Joined: Wed Nov 23, 2011 10:46 pm

Re: 5 years NED, now what?

Postby hart2hart » Sun Feb 15, 2015 11:02 am

Congrats Bob!

So VERY Happy for you! I would probably continue to see my onc once a year but that's just us......
IF you choose your GP, just be sure he is on board with everything. Bloods, scans, scopes, etc.

You live in the Bronx??? Come for dinner one night and we will celebrate witrh you! My Pete is a gourmet cook!


Julie and Pete
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020

Posts: 1525
Joined: Mon Jun 13, 2011 1:13 am

Re: 5 years NED, now what?

Postby rp1954 » Sun Feb 15, 2015 1:05 pm

If you're comfy with looking at your own blood tests, we add CEA, CA19-9, CA72-4, LDH for maximium breadth CRC blood test sensitivity, ESR and hsCRP to track and adjust inflammation. Since CA72-4 was negative at the start, we only use it occasionally. LDH5 would be better than (total) LDH but costs extra. The Onco-Sure DR70 fibrogen degradation products test would also add sensitivity, if it is available. The problems are drs lack of experience with multiple markers, transient minor elevations, monitoring continuity, scanxiety and costs.

To me, ideal would be: you get 30 panels and markers tested biweekly or monthly at Walgreen/Walmart/Costco with a finger stick test, $50-$100. Don't even look at it most of the time. They track it and when something gets statistically suspicious, a medico calls you and you're data ready for a productive visit. Theranos' 30 panel finger stick is already in trial at Walgreens. We can already do the baselines today - at diagnosis, before & after surgery and chemo.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

Re: 5 years NED, now what?

Postby hopeful » Sun Feb 15, 2015 6:01 pm

Congrats on the 5 years, Bob! You can breathe a little easier now.

My husband just had his 5 year clear visit and scan in January. He will probably go back for blood work and CEA yearly now but won't have scans as long as everything else looks ok.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: 5 years NED, now what?

Postby Lee » Sun Feb 15, 2015 6:16 pm

Congratulations on 5 years. That is a major milestone.

I continue to see my Onc (coming up on 11 yrs). We are now down to just doing CEA testing once a yr. My primary care Dr does not want to do follow up care for my CRC. And I still live in fear of it coming back. But will admit those fears are not nearly what they used to be. Anyway once a yr I see my Onc for 5 mins. It's my security blanket. Because of other medical issues, I get a major blood test once a year (with 12 hrs of fasting), CEA, etc and both Dr.(s) get the same results. On that front, everyone is happy.

Again, congratulations,

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!

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

Who is online

Users browsing this forum: Cured, Google Feedfetcher and 53 guests