Advice to NOT get Scans

Why is the ENT the one making decisions about scans at this point.  I would find out what radiation oncologist or oncologist has to say about this.  PET scans do not always pick up my cancer but MRI's with contrast seem to work.  I will be scanned every 3 months for this year.  I know in the past I have had problems with insurance approving scans but it is my oncologist that orders them, not my ENT.  I do make sure that the ENT gets a copy of the CD and report.

Hey Shawn,

This topic definitely lurks in the shadows. If your brother and you trust the doctors who are providing care, then take their recommendation. All imaging tools such as MRI, Xray, CT , PET/CT are just that - tools used by the professional to enable them to do their job. It is their own personal choice of tools to use and how much they rely on each one along with their own experiences and knowledge.

How often do you take your car to the mechanic and participate in the diagnosis of what is wrong? Of course the difference with an incorrect diagnosis of your car problem has you driving out no better or worse off. But maybe it allows you to sort of view scans as the DOCTORS tools, not the patients, and they naturally knows what works best for them.

If it were you and you felt strongly about the value of the scan and the current doctor does not support that, go find another doctor who is happy to get you a scan. As it is your brother and he seems comfortable with his current team and their recommendation, then it seems you are better off supporting his decision and his trust in his medical team.

Don

The ENT who found my husband's cancer the first time, screwed up the second time.  He did look down my husband's throat after he completed radiation and chemo, each month (for 3 months) but then in Janaury he thought he saw something but did nothing about it.  Then a month later my husband was having difficulty breathing so I made an appointment with the radiologist to see what she thought.  She listened to my husband breathe and talk and immediately sent us to another ENT.  That ENT looked down my husband's throat, said one side of his vocal cord was parlayze and he needed a trach and a biopsy asap.  It was done and we were then referred to a head and neck specialist.  

Guess what I'm trying to say is that just looking down your throat things can be missed.  Another thing they missed when scoping my husband was that the radiation completely closed off the back of his throat.  My husband had a PET/CT scan every 3-4 months after surgery.  One year later during a PET/CT scan cancer was found at the cervical of his esophagus.  More radiation and chemo, PET/CT scans 3-4 months for follow up until the last one found that the cance had reoccurred and was also in one of his lungs.

Each doctor is different in what they do.  But we were given a list of what was the preferred follow up scheduled for PET/CT scans. doctor visits, etc. and they were done according to the papers we were giving 3-4 for the first year, then every 6 months, then once a year.  I know that there is a lot of talk among doctors of the benefits of PET/CT scans and if they are really necessary.  I think insurance plays big part because of the cost involved.  My husband during the almost 4 years he has been fighting has never had an MRI. 

Like everything ln life, guess it boils down to what each doctor thinks and if you as a patient are confident with the way your doctor is handling your care.   It is up to each of us to speak up for ourselves when it comes to our life.  I do know that I asked our oncologist about a CT scan to see how the cancer was progressing in my husband after a year of no treatment but he said no since my husband declined further treatment.  

Sharon

We were just at our one month check up today, and I asked Pat's oncologist when he would get his first scan post treatment, assuming he would have one. Her answer was that given Pat's particular circumstances, she didn't really feel like a scan would be neccessary unless she were to find something upon examination. Obviously, Pat will be watched very closely for the next couple of years, and she did add that his radiation oncologist may indeed want a scan, but if it were completely up to her, no scans for Pat as long as things continue to look and feel good.

Jamie

I'm in the same boat. My team at Johns Hopkins said no more scans. I had a PET at 15 weeks and it was clear. Now, I go every three months. I get scoped, poked prodded and examined. I'll get a chest x-ray once a year. I'll go every three months for the first two years and then every 6 months until 5 years when I get cut loose. Their logic is that they'll be able to see something out of the ordinary and I'll know if something is amiss at this point. If they or I see or feel something that warrents further examination, they'll order a scan. While I'm a little uneasy about it, I trust my team. They're some of the best in the country and got me this far. I can't imagine they would do something that would put me at risk. 

Positive thoughts.

"T"

for a scan and was told it wasn't needed.  I haven't had any since my second rad treatment, and I only had that one because I was very swollen and they determined it was a clogged salivary gland.  Before that I had my CT before surgery and that's been it! 

phrannie51 said:

One of the things that keeps going through

my mind.....I wonder if the scarcity of scans is any way related to the fact that they'd all be taking place in 2014, and insurance, and coverage, and Obamacare are all in the air for many....maybe Drs.'s thinking is changing to coincide with all the new stuff happening in the medical insurance fields?

p

I wondered if less scans was a generally accepted medical trend or a financially driven one. I pondered then decided there seems to be growing support within the medical community that scans do not offer sufficient benefit to warrant the procedure pst tx beyond the first one or two. After than most ENT have confidence in their standard office procedures to identify onset of local recurrence. It seems an annual image from xray or CT is reasonable to look for recurrence in new distant areas but I'm not sure if that is even classified as recurrence.

If one had distant metastasis, not loco-regional, when first diagnosed, it seems ongoing scans would be needed to look for recurrence in those areas where endoscopy and other standard methods of evaluation may not be effective.