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#58020 03-26-2006 07:16 AM
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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?"


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58021 03-26-2006 08:30 AM
Joined: Jun 2005
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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

#58022 03-26-2006 09:26 AM
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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


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#58023 03-26-2006 09:44 AM
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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!


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#58024 03-26-2006 10:29 AM
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58025 03-27-2006 04:10 PM
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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


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
#58026 04-22-2006 05:52 AM
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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


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#58027 05-03-2006 04:54 PM
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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 ...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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