CSN Login
Members Online: 16

Your follow-up schedule after tx...

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Hi All,

I was wondering if you each would mind telling me what your schedule of follow-up visits consisted of/and how often after tx. I know Kreg will be seen every 6-8 weeks with scope by his ENT, but he was unclear of his scan schedule, just that it was head to chest. I'm waiting to get some clarification on that and in the meantime would like to get some idea of what to expect and compare.

 

As always, thank you! 

~C

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Stanford is backing off on followup scans, owing to the fact that the scans themselves can cause cancer. 

I am now just over 2 1/2 years out from treatment.  I first saw my local ENT and my Stanford Head/Neck Surgical Oncologist alternating every six weeks.  After a year, I started seeing them every eight weeks, and I am still on that schedule.  At first, I saw my chemo oncologist and radiation oncologist on the same schedule, but after two years, I now see them every six months.

I had a diagnostic MRI and a diagnostic PET-CT.  Two months post treatment, I got a baseline MRI.  Three months after treatment, I got a baseline PET-CT that showed no hotspots.  At two years, I got a PET-CT but it was a fight with my insurance company.  Stanford did not recommend a three-year PET-CT.  My two post-treatment PET-CTs showed a couple three tiny nodules in my lung. Stanford is following them, and did a 3 year Chest CT.  The Chest CT showed no changes in the nodules.  Stanford will follow the nodules for three years, and if they see no changes, they will not do any more Chest CTs. Stanford recommends annual Chest X-Rays.

As always, I am scoped, prodded and palpated every eight weeks. My cancer was base-of-tongue so the doctors are all satisfied that they will be able to identify any recurrence via the scopes, scans, and cramming their fingers down my throat. Urg.

I expect that this schedule will differ a bit for everyone, depending on your original diagnosis.

Deb    

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

I struggled with this as well and finally my ENT took out the guidelines (by type and staging)

Here is hopefully a link, if it doesn't work, I am sure someone will step in and fix it.

I am sure there is some individualization that needs to be added to the process by your doctor.

The site is free to register acess. But I cannot link to it here.

 

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#head-and-neck

 

 

http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Pursuant to these guidelines, I should have easily been allowed my two-year scan, and likely a three-year scan. Not sure what is up with my insurance company - Anthem Blue Cross.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012
staceya's picture
staceya
Posts: 704
Joined: Jan 2010

Smile

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Oncologist, and the same ENT office as Stacey (same office different ENT's)....I have an ENT appointment once a month until April, then it moves to every 2 months.  I got my 3 month scan in November, then they didn't say anything about another...and I got nervous.  I have a 90 day Oncology appointments and just went on March 5th, where they brought up another scan....but this time it is a CT/MRI not a PET.....and it is just of my neck and head, I guess.  Makes me nervous, because the ENT has already told me he'd see a reoccurance faster than a scan....but my worry is always my lungs....and nobody is looking there.

So basically it's once a month for the ENT, every 90 days for the Onc.....and so far, some type of scan every 3 to 4 months...

p

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Jeff saw the ENT and he looked down with his camera 3 weeks post rad tx. The pet scan we were told to wait 3 months so it is scheduled for sometime in April. The Rad MD said the scan would still show inflamation and would not be accurate before 3 months.

Sue

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

one year, three and one half months out from robotic surgery that removed my epiglotis. When I was released from hospital, I started going every week for scope and speech/swallowing..I did this for about 1 month, then went to 3 weeks, then 6 weeks...right now I go every 4 months for scope. My speech and swallowing are excellent, after one year of a soft diet, I can now eat whatever I want.

The last time I was there ( The James, Columbus Ohio) my Surgeon had a new assistant on his team, he started to set me up for a pet scan, but, my Dr came into the room and said it wasn't necessary...I have had no scans in one and one half years.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Well I guess I'm the Eary Bird.  My Onc is doing a CT head/neck/chest at 6 wks post treatment and a PET at three months.  The CT will be done tomorrow, think I'll get much sleep tonight?

 

Joe

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

 Well I guess everyone is different in this too . I just had my first CT after rads at 4 months last Friday (NED yay!) A PET hasn't even been mentioned. I go to my ENT every 3 months and the same to Onc. Good luck tomorrow Joe .

Peggy

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Joe,

Blessings sent for you for tomorrow. That's interesting they are doing a CT this early. Especially when the rads/chemo are still doing their job. We had the PET at our 12wks (3 month) and got our NED.....now just wondering how the scan schedule will be Smile

 

I'm sure everything will be good for you tomorrow. Smile

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

My Onc told me the reason that he likes to do them at six weeks when there are mets to the lymph nodes (I had them on both sides) because if they find anything surgery can be done quickly while everything is probably well contained.  He also told me the odds of finding anything is very remote.  Doesn't change the pucker factor.

Thanks for the good wishes.

Joe

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Cris,

 

Every 3 months for the first 2 years, every 6 months 2 – 5 years.  Nothing after 5 years.

 

ENT every appt. (scope, look see & palpitate)

 

Rad  & chemo onc at 3, 6 & 9 months (no more)

 

PET/CT at 3 & 9 months.  Unless problem seen during exam or problem occurs, no more (I guess)

 

Insurance and cancer screening guidelines take over once you are post treatment.  I would like to see a little more PET/CT action (proactive), but don’t think it is in the cards.

 

I did not feel the cancer the first time around (I felt a lump).  I hope there is no second time around. 

 

If I get worried, I’ll simply ask for a scan and proceed from there.  The H&N forum makes me want to think outside the box.

 

Matt

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Did you already have your 9 month scan? Then that's it for scans over the 5 yr?

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

You have mine already I believe...

Similar to Matt...

First year - every 6 - 8 weeks ENT scopes, I think overall I had two CT,s and two PET's the first year... Regualr schedled was about three months post Tx.

Blood work with Onc, every four months... Rads follow-up at six months and one year, then cut lose from him.

Year two - scopes moved to 12 - 16 weeks

Scans moved to every six months, a CT, then a PET..., same with blood work and onc follow-ups..

Year three, scopes at six months with ENT, scans at six months along with blood work....

As far as I know that schedule will continue, as I'm into year four now...

As mentioned above, my ENT isn't big on the added scans, they are coming from my Onc...

JG

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Cris,

Yes to 9 month scan complete (NED).  Future scans?

Matt

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

this thread scares me b/c u guys all get scoped but i never do.  sounds like i should start requesting it.

God bless,

debbiejeanne

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

My ENT has scoped me every year since treatment... First year evey 3 months, next year every 4, third and now fourth, every 6 months...

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

thanks 4 the info!

God bless,

debbiejeanne

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network