5 years NED, now what?

[Bob_Weiss]

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?

[DarknessEmbraced]

Congratulations on 5 years NED! 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.

[MamaN]

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.

[Bat-Mom]

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.

[CRguy]

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 !
CR

[meatie]

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!!!!

[Ron50]

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.

[weisssoccermom]

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.

[Sleen]

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.

[Delinda2]

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

[Cj51]

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.

Cj

[hart2hart]

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!


CONGRATS AGAIN!

Julie and Pete
Stamford, CT

[rp1954]

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.

[hopeful]

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.

[Lee]

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,

Lee