I am curious about PET, CT, or other scans after treatment. I have been cancer free for two years now and regular physical and oral exams by a dentist, an otolaryngologist (long name for an ENT) and my radiation oncologist. I have had no scans since radiation finished in May 2004. I asked the ENT the other day about scans. His response was that he only calls for a scan if a physical exam reveals anything unusual. He is a top ENT & should know his business. And I am indeed grateful to be found cancer free at the 2 year stage.
However, I would like to know if this is the standard or have any of you had scans done even when physical exams were positive. I may be overcautious but with having recurring cancer once, I think I have good cause to think this way.
This is absolutely the best oral cancer forum going and I wish everyone the best.
Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0)
subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)
Hi Jim,
You are going to get many different answers here. I had left lateral tongue scc and had surgery only. I was T1/NOMO. I'm just short of one year.
My surgeon's only recommendation is a chest x-ray once a year. I had it 2 weeks ago and it was clear. No PET or CT scans as follow-ups. I see him every 3 months now that I have almost hit 1 year. I intend to get a laryngoscopy once a year. This is my decision, not a recommendation.
My follow-up is probably the least comprehensive of the answers that you'll get. I have no idea if it is enough, but I'm comfortable with it as it is right now.
Jerry
Hey Jim,
I was T2/N0/M0 and like Jerry am also just short of one year. I am seeing my otolaryngologist every 3 months, and he ordered a PET at 6 months (clear! yay!). I don't know if I put too much stock in it or not, but the PET scan let me breathe a huge sigh of relief.
He hasn't said anything about which scans I'll have in the future or how often. I'll make sure to ask at my next visit.
Thanks,
Jennifer
If you are just seeing an ENT or head & neck surgeon that will be the typical response - no scans - for some reason they are just not into them. The chest x-ray is indicated on the NCCN oncology practice guidelines. It's my RO from the CCC that orders an annual MRI for me - my HMO will do anything she says. She doesn't think i need the annual chest x-ray go figure. Some here get semi-annual PET/CT scans. I am going to insist on an annual PET/CT because after three years I feel a bigger risk with distant metastesis since my tumor was so large, it was estimated to be 2 years old at Dx. My first PET was ordered by the MO.
I had a PET and MRI 3 months after the end of rad and chemo. I don't actually know when I am supposed to get another. I had a checkup with my ENT just last week and forgot to ask him about that! I'll ask ( I need to call his office anyway about something else) and post when I get his answer.
Nelie
Standard operating procedure at Johns Hopkins, for what it's worth, is that all head/neck cancer patients get a PET/CT scan at 3 and 6 months' after treatment, then (usually) it goes to every 6 months for two years, then annually for some years (3 more I think).
Barry had the first two scans (clear!) and his next one will be a year after end of treatment, unless RO feels it is not necessary. Our ENT surgeon also orders scans but is wary of false positives -- if there is a suspicious reading, he might want an MRI to check the area, or even a biopsy if practicable. Actually, speaking to the JH radiologist - who only reads HNC and brain scans so he's seen 100s if not 1000s of them -- he says that rate of "false positives" is less than 10% and maybe only about 5% -- however, inflammation, healing, and active infection can produce "activity" and this requires experience to sort out. Barry's last scan showed activity in chest area which they said was residual from his (earlier) pneumonia and noted it needed to be followed-up on and treated.
PET/CT scans are supposedly the best "scanning tool" available but it is only one of the many tools your doctor will use to monitor you after treatment. Physical exams are also important. Barry is in a study at Hopkins looking at blood/serum markers for HNC and maybe in the future this will also enter the tool chest.
Gail
I had a PET Scan about 5 months after surgery and (2 months after completing the radiation & chemo) and it showed very, very minor activity on the opposite side of my neck. The doctor seemed to dismiss this activity and told us of the false positive probability, but said they would keep an eye on it. In February, through self examination, I found what I thought was a swollen node and I had some physical pain when I moved. The surgeon felt the area and told me that I had nothing to be concerned about. I went home happy, but a little part of me was still concerned. The following week, my husband and I decided to see the RO that had treated us and he said he did feel a swollen node. They ordered the CT Scan and earlier this week, Tuesday, I had the neck dissection. (Just got home from the hospital yesterday.) Not trying to be a bummer here, but I strongly feel that you have to be assertive(especially with ENT's). The good news is that the node they removed this week was only 1 cm at most.
Unfortunatley there is no SOP for PET/CT (or even just PET) post Tx in the NCCN oncology Practice Guidelines. It's done, or not done, on an institution by institution basis. It is the most expensive and time consuming scan and I am sure that the bean counters and insurance companies have strong objections to paying for them. Actually I just checked and even the NCCN workup doesn't include PET or PET/CT (only for "occult primary" and nasopharnyx tumors so far (if not found by MRI or CT)
Jim,
Our RO at our CCC is strongly opposed to scans, our ENT says he will order them if we want them and our Chemo oncologist demands them every four months.
The last scans were done last November after 4 months from end of treatments as ordered by the chemo doctor. We got all kinds of bad news following the scans during an hospital stay from attending doctors regarding recurring tumors in the tongue and neck. We were devastated.
Then we went to see our ENT. He tolds usa that the scans were normal. A few days later went to go see our RO and he was furious that the scans had been done. He basically said the the scan report was not worth the paper was written on it and that he had looked at the scans and there were no tumors.
The RO continued to say that scan reports which are written by radiologists tend to be pessimistic because of liability reasons and than it is left to them (RO's) to explain the scan reports.
In our case the RO called the radiologist that had written the report and requested that the report be amended.
We saw our Chemo doctor last week and this doctor wants more scans done. We feel we are in a trap.
Hi Vin,
That's a shame what they are putting you guys through. You obviously need a team that are all on the same page. I've been reading posts here for almost a year and have never seen such a lack of agreement. Is there any way you can get them all to communicate with each other?
Jim,
As you can see, as I said above, there is not going to be any one answer, there is no standard of care that every doc follows.
You've got to go with what feels best for you and will leave no question in your mind. It IS a very difficult decision.
Jerry
I had somewhat the same experience as Vin with early MRI's. It was very devastating to complete treatment and then get a negative scan report just to find out basically the same thing, that "it wasn't worth the paper it was written on". The ENT's prefer "direct visualization and palpation" over scans. My docs are the same in many ways even though they are a coordinated team. Even the NCCN guidelines places comments when the 17 member institutions are not in agreement for this or that - which is often. They have ratings for agreement or disagreement.
Vin is absolutely correct about the ultraconservative readings by the reading radiologists (not to be confused with the RO). They dutifully HAVE to report every anomaly they see, no matter how predictable, much like lawyers have to give you every possibility or face malpractice suits. Where one might think that a clear scan is a relief, more often than not, you won't get a clear scan and instead of relieving your angst, it will extend and enhance it. It's so bad, in fact, that when people here report early clear scans I get suspicious about the reading. Then come the follow-up examinations that disprove the scan findings and even more angst - well maybe they missed or they are not telling me something.
Then there are those few who have had early scans that have shown something of a major "region of interest" (ROI).
The "bottom line" is sometimes the dictating factor and also the fact that it is a medical "art" rather than "science". We are all pioneers in cancer research whether we like it or not (AKA lab rats) and there will probably never be a universal standard of care. This discussion will go on endlessly and never have a resolution. We might as well ask "why is there air?"
To All,
Thank you for taking time to respond. I see my RO next month and will run the question by her to get her ideas on it. My ENT is a very experienced surgeon specializing in head and neck cancers at a Comprehensive Cancer center so I should feel pretty certain he would notice if somthing were awry. He also usually has a resident examine me right before he does so this is added comfort. I do feel better informed having heard others experiences on this. I wish everyone well.
Jim Haucke
Reading scans is definitely an "art" -- the radiologist who reads the Hopkins ones is an expert on HNC and also on brain cancers -- our ENT says unless you get someone like that who sees lots and lots of these, so he/she can learn what is serious and what is not, then the scan is not worth doing. It is just more apt to produce angst (as Gary says) on part of both patient and doctor.
I wouldn't go to a community radiology center where most of what they do is general stuff for a post-treatment PET or MRI...and just because it a CCC doesn't necessaily mean the radiologist sees 100s of HNC scans, either, if they don't have that many oral cancer patients.
But physical exams can miss stuff as well -- so that is why so much research is ongoing for new biomarkers for all sorts of cancer, some of which is promising but none ready for prime time yet...
Gail
Jim, I'm coming up on 3 years since my surgery (April 16th) and I had one CAT scan done before surgery and have had no more then a chest Xray since. Chest Xray once a year. Just had my 3rd year one, it was clear. I am a firm believer that a physical exam is the gold standard, as Brian puts it, and I also believe that my doctor is my best line of defense for detecting a recurrence. I am perfectly ok with not having a PET scan twice a year!
Minnie is absolutely correct. The physical exam is definitely the gold standard. That's why the NCCN guidelines have timetables for their frequency vs. time from end of Tx. Annual chest x-rays are part of that protocol also. My RO, by the way, has serious doubts as to the usefullness of an annual chest x-ray - in her words, especially if "you were not a smoker". If you're really serious about a chest x-ray then the spiral CT is the best way to go ("exquisite images" to quote her).
Gail's point should thoroughly understood as well. Reading IS an art and the head and neck a highly specialized, complex part of the body. That is why we BEG people to go to a CCC or CC or a very least, get a second opinion from one. It's comparable to bringing your BMW to a Hyundai dealer for repair.
Jim,
My head & neck surgeon went to medical school at UCSFCCC so I have confidence in his abilities. As it was explained to me, scans are only a small component of the total diagnostic procedure. All of my scans get read twice, both at Kaiser, where they are typically done, and also at UCSF. It's my RO who wants the annual MRI and it's part of UCSF standard follow-up protocol for H&N patients. She has residents and students double checking me as well - many times I have to encourage them to really put the gloved hand down there so they can feel what it's supposed to be like. They tend to be shy at times.
Remember also that even the BEST scanning equipment cannot "see" or detect a tumor smaller then 2mm ~ 1/8". How small a tumor or node can they palpate? Brian probaby knows that answer to that (I would hazard a guess of a cm or a little less).
My personal feeling, which I have stated many times before, is that my own risk is no longer from local recurrence (statistically 5% or so at 3 years post Tx) but distant metastesis and that is why I am pushing for an annual PET/CT. I want to know what's happening in my liver, kidneys, lungs and brain.
It is pretty clear that there is no one definitive answer to Jim's question. I'm being followed at Mass Eye and Ear Infirmary in Boston. I had a CT scan 3 months after treatment (surgery and radiation), 6 months, 12 and 18 months and will have another at 24 months. The early scans were ordered by my radiation oncologist and the 12 month and subsequent ones by my ENT.
As Gary and Vin mentioned, the radiologists must write up every possible abnormality no matter how small. After my 6 month scan, I was told that I had a spot on my lung and would need another scan of my lungs. That scan ultimately showed that my lung was clear but then, at the very bottom of the lung ct, it turned up an enlarged mesothelial lymph node near my small intestine. This led to a CT-guided needle biopsy - fortunately not malignant.
Now, when I have a scan, I have a scan from my head to my lower abdomen to follow the enlarged lymph node. I suppose I should be comforted by the thoroughness of the scan in terms of turning up any possible mets. But at some level, I'm concerned about the amount of radiation.
Ultimately, I think it is the combination of physical exam, scans and close follow up that offer the best chances of early detection of recurrence or metastasis. And if your team is in agreement about the follow up procedures, that's a good start. - Sheldon
Hi James & All,
I think scans are very important. If you want a scan done then tell your Dr. After all you are the one that has to sit and wonder. Only a scan can relieve our minds.
First year 1 every 3 mo. Then every 6mo.
Thats my thoughts
DM
Let me just throw in my experience ...
I was initially T1/2 N0M0 with tumor on my tongue ... had surgery in October 2003 and followed with radiation in December 2003-January 04 ... six months later I go back for follow-up and talk with my ENT about tenderness in my neck. He does a full physical exam, doesn't feel anything abnormal but didn't have a good feeling about it. So he orders a PET "for my peace of mind."
The PET revealed two hot spots, one in my neck and one somewhere in the roof of my mouth. I then go for an MRI, which also shows something irregular in my neck (but nothing abnormal in the other spot). They do a needle biopsy of the hot spot on my neck, and that came back negative for cancer but showed dead tissue. Still questionable.
My ENT, who is about my age (mid-30s) still doesn't have a good feeling, orders a surgery to remove the entire lymph node to get a look at everything. It turns out I had a tumor there about the size of a quarter. If not for his gut feeling and getting the PET, I may have let that tumor stay in there awhile before dealing with it. It came out, I went through more rad and chemo, and am still kicking now ...
I moved across the country and my new ENT doesn't order PETs and pretty much told me they are too expensive. My former ENT likes them if they give you peace of mind.
I had one anyway a few months after my second round of treatments ended as well as an MRI a few months after that. So far so good -- negative for cancer ... I'll likely want to get a PET again sometime soon since it's been more than a year, again for that peace of mind thing and because I am concerned about distant mets... Still going to the doc every 3-4 months for physical exam as well, trying to keep all bases covered ...