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#19325 01-13-2006 06:53 AM
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Hello everyone. I have been reading your postings for months. I have found answers, relief, and encouragement throughout that time. My Father was diagnosed 8/17/05 with SCC T2 of the left hard palate. He went in for surgery 9/6/05 where they removed the cancer as well as another mass found on his Lymph Node. All areas were tested and came back clear post op. He went through 6 weeks of radiation that he ended on 11/9/05. Meanwhile we had been making sure he was eating taking vitamins to keep up his strength. He did very well. Now we are sitting here after a CT Scan and Biopsy which came back inconclusive waiting for an appointment for a PET scan. It's all up in the air right now. Any insights? or Predictions?


P.Silveira
***************
Caregiver to Dad SCC Stage III T2N1M0 left hard & soft palate, left Node Dx 8/17/05, Neck Dissection 9/6/05 clear margins, Rx 30 ended 11/9/05, Still not cancer free. + path, agressive, upcoming chemo
#19326 01-13-2006 03:14 PM
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Welcome:
Biopsy, should have been the final step and conclusive. Maybe there is some miscommunication. Personally, I would not go through the ordeal of Pet scan if the area in question had been biopsied and no cancer cells were present. But not being a Doctor and everyone has an opinion.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#19327 01-13-2006 05:20 PM
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Well, the biopsy was done of the area where the cancer had originally been removed and diagnoses was "largley necrotic squamous cell carcinoma". The surgeon and radiolgist cannot agree as to wether this is "dying cancer" or "same cancer" that survived radiation. So they ordered a PETscan for I do not know what. What does this mean? Do you know? They just both seem to be dumbfounded.


P.Silveira
***************
Caregiver to Dad SCC Stage III T2N1M0 left hard & soft palate, left Node Dx 8/17/05, Neck Dissection 9/6/05 clear margins, Rx 30 ended 11/9/05, Still not cancer free. + path, agressive, upcoming chemo
#19328 01-13-2006 11:38 PM
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Early scans are often inconclusive and reading radiologists tend to be very conservative. The post Tx biopsy is a little unusual but so is cancer of the hard palate (we see many more tonsil and tongue cancers here).

A PET scan this early will probably yield some false positives as well, as the healing process mimics the same increased sugar uptake as cancer does.

PET/CT is the best and most accurate form of PET - here is a link to a reasonably non technical discussion - for you non-believers (we have had many animated discussions on PET scans here) go to the GE links (image gallery) on the site and check out the patient studies.

Is he being treated at a CCC like Stanford or UCSF? I live 15 minutes down the road from you so feel free to ask for my phone number through the personal email feature on the forum. I will be happy to talk with you personally.


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)
#19329 01-14-2006 03:24 AM
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We have indeed had some discussions on PET scans here in this forum. The newest technology ct/pet is indeed better than the older PET and not as stressful.
I had one and I only had to stay in isolation room for 1 hour and the scan took only 25 minutes.
If you are clostrophobic arrange for sedation prior to getting the test.
The CT/Pet is in essence a 7 foot tube....Or at least that was the design of the one that scanned me.
My test was inconclusive and was followed-up with a anatomical CT thoracic and neck. I am now awaiting an appointment with a thoracic surgeon and a radioligist for small needle biopsy at level 4 in my neck (right side).


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#19330 01-14-2006 06:22 AM
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Thank you for your responses, especially today. He apparently has woken up in bad shape today and my family is considering taking him in to the ER. He woke up with really dry mouth and is choking on everything he eats. I know if we take him in they are going to give him a feeding tube. I don't want him to do that since August and his surgery and radiation he has only lost two pounds. We've worked too hard to keep his weight up. I think it's a saliva issue.

Dad is seeing private care here locally in Castro Valley. I just went on to the Stanford site yesterday after all these uncertainties but I didn't want to schedule him an appointment without talking to him first. I had heard Dr. K. is the best. He saved this woman I saw at the oncologists the other day.

I am really considering 2nd opinions before letting anyone do anything else to him. What do you think?


P.Silveira
***************
Caregiver to Dad SCC Stage III T2N1M0 left hard & soft palate, left Node Dx 8/17/05, Neck Dissection 9/6/05 clear margins, Rx 30 ended 11/9/05, Still not cancer free. + path, agressive, upcoming chemo
#19331 01-14-2006 07:30 AM
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I don't know what happened to the link that was supposed to have been in my previous post but here it is again:

http://www.harthosp.org/radiology/pet.asp

If he's had an MRI, the PET scanner is no big deal - it looks just like a CT scanner - just a big old donut hole - MRI conversely puts you in a 10' by 10' cube with a very narrow tube in the middle. There are open frame ("C" magnet types) but their image quality is inferior to the super cooled magnet varieties.

OCF forum policy is not to mention specific doctors names on the forum.

I would an speak to an advice nurse at Eden in oncology before I did an ER trip. He may be in the ER for hours before he even sees a triage nurse. I have been listening to my scanner this morning and the Eden ER has been very busy because of accidents from the storm.

The dry mouth and choking in the morning (on phlegm) is standard operating procedure with throat cancer recovery. The ER is probably not the solution.

I could walk to Eden from my house but I opted to go to UCSF every day for treatment. This is not meant to be a negative thing about Eden, They have one of the best trauma centers around but they are not a cancer center. I think you are wise to get a second opinion. Like I said earlier, you can choose UCSF or Stanford. I chose UCSF based on the type of radiation I recieved and the expertise of the RO. I had an advice nurse in oncology at Kaiser in Walnut Creek that I dealt daily issues on.

About the dry mouth - start out with ice chips, small sips of room temp water (cancer patients are recommemded to take in 2-3 liters a day).

One thing you'll want to avoid is aspiration of anything into the lungs. It can cause pnuemonia.

The phlegm is stubborn and hard to get rid of first thing in the morning. Don't try to eat solid foods right away after awakening.

Here are some tips on managing zerostmia (dry mouth)

Sip water regularly.
Try over-the-counter saliva substitutes.
Breathe through your nose, not your mouth.
Add moisture to the air at night with a room humidifier.

I lost over 60 lbs and still didn't get a PEG. They usually want to see a 20 lb loss before the docs get antzy about it.


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)
#19332 01-14-2006 07:38 AM
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Oooops sorry for mentioning names....But thank you very much.....I'm going to let him know ....He's trying to see if he improves a little before deciding for sure. Thank you for all your responses. When you are in a paranoid state it is very helpful.


P.Silveira
***************
Caregiver to Dad SCC Stage III T2N1M0 left hard & soft palate, left Node Dx 8/17/05, Neck Dissection 9/6/05 clear margins, Rx 30 ended 11/9/05, Still not cancer free. + path, agressive, upcoming chemo
#19333 01-14-2006 08:28 AM
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Paranoia comes the program and that's why we are here. And also to let you and many others know that your experiences are not abnormal.

I forgot to mention - if he is a "mouth breather" that will really cause dry mouth issues so a humidifier may help that a little.

He should have a water bottle with him 24/7. Straws can help a lot too to direct the water to optimnal places in the throat.

Stay away from juices or anything acidic.


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)
#19334 01-14-2006 11:30 AM
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PET scans are somewhat controversial on this forum. Used within a few months after radiation they are prone to false positives and need to be read by someone who has LOTS of experience with head/neck cancer. Radiologists like that do not work in the community hospital. Most will 'cover' themselves with summaries like "inconclusive". Take that scan to another more experienced radiologist in a cancer center.

I too had post treatment biopsies (tongue) instead of scans. Tissue samples are the ONLY way to conclusively diagnose the presence or absence of cancer.

Get multiple opinions on every step of the process. Its never too late to get another opinion. Travel if you need to, but get those additional perspectives. It is time and money very well spent. Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.

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