Annual Testing - Long Term Survivors

I completely agree and understand .
My thoughts exactly . Between my wife and I it is hard to keep everything straight !

Annual cancer checkups going on for eighteen years now? Do I have that correct? And an annual chest CT?
Wow! Just wow. I have never heard of anything like that. Common for checkups up to five years out, some for three years. One would think that a chest CT yearly would cause more harm than good, it is radiation after all. What besides gold from you or your insurance are they looking for?
Non-medical advice: go to a different clinic. Get a second opinion on cancer follow up.

2006 here. SCC at the base of the tongue at 49. 42-bouts of radiation and 6-weeks of chemo out of 7 scheduled. Studies in the UK have shown there is little change in outcome having annual checks after 5-years. I stopped annual visits around 10. I have an annual ultrasound of the carotid artery. A lot of what I get testing for is related to baroreceptor failure, a side effect of the radiation treatment. I have an endoscopy every 3-years, but that is more for GURD. They should be able to spot any issues developing. At 20-years, I'll be keeping an eye out for changes that might indicate a secondary cancer. Good luck.

Hence my question. I've thought the same about the chest C T. At what point do the cumulative doses of radiation do more harm than good.

I am at year 3. My ENT surgeon and Oncologist still want 6 month visits but I have stretched that to 9 months. I will continue to go in year 4 but after that I am done. I cringe every time I have a Head and then Chest CT as I know how much radiation I have already had. The odds of recurrence are in the first 3 years in reading most data. There is a slight risk beyond but I will monitor my own symptoms. I realize most will continue to get follow up testing which is the norm. The HPV throat cancer follow up protocols are really all over the place. Everyone must do what they feel is right. Moving forward I believe the NavDx blood test will be a game changer in HPV cancer surveillance. One blood test a year. If negative no worries. If positive then you start up your CT scans and throat scopes.

@jonesja
Makes you wonder how much of the excess treatments and surveillance after treatments are profit motivated, even at the non-profit organizations.

I like the idea of using the NavDx test instead of the PET/CT scan .

I think I will ask for it in the future and see what kind of response I get.
But this blood test is done by an outside private group so there isn't much financial incentive for some cancer centers to use it .
That and private equity has been taking over many hospitals nationwide so
we know how that ends.
I was scheduled for a CT neck scan only 2 mos. out of treatment which I cancelled after getting the neg. NavDx test back. Told the nurse no more radiation !
But there was pressure and reasons I needed the CT scan even though the following month was scheduled for the PET scan which seems to be the normal surveillance protocol.

@woodsy1 You said it exactly.... "But this blood test is done by an outside private group so there isn't much financial incentive for some cancer centers to use it"

@jcl2018 Exactly. If it is all so darn safe, why do they leave the room? Ask your team what it is they are looking for. Ask them to justify all of this. If you or anyone else haven't a clue why you need years of follow-up, then just say goodby. It could very well be that they think you want all of this added care. Five years is the standard. First year can be two or three exams. Second and third year is often one to two exams. Then once per year through year five. Better than 80% of reoccurrence shows up within the first two years.
I remember being told at the five year mark that I was now at the same average as the rest of the general population. I said to myself "Great." "That's where I was when I got cancer!"

@ernierogersquamus123 Morning , due to all the side effects of radiation for head and neck cancer I have had what is called a barium swallowing test . This test they say is necessary because I am on a feeding tube for almost one year now . I can’t eat because of the continuous side effects,
I’m told a person normally swallows 2000 times per day .
In my condition I doubt if I swallow 300 times a day . (My guess .)
I try to drink water but I don’t even have an appetite for that .
God bless you all and stay safe .

@ernierogersquamus123 Many patients tell me that the longer they are on a feeding tube, the harder it is to regain the ability to swallow.
Swallowing requires the use and coordination of around fifty small muscles. Exercising of those muscles is probably the only way to keep them working correctly.
I myself have a bit of permanent damage to the epiglottis and have scar folds or pockets in the upper throat as well. Eating is always a slow process for me. No talking or breathing through my mouth while eating. Lots of concentration which I eventually got used to. Of course it is more difficult in social situations and I end up choking or coughing.
As for the appetite issue, your body says you are not hungry. That is one I have no experience.
The barium swallow test, I have. And yuck. Why can’t they make that paste taste a little better. They should call that test a gag reflex test.
Advice, keep seeking help from other doctors or clinics until you find a solution. You are your own best advocate. If we don’t take charge of our health, who will?