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I finished treatments on July 31st and had my first Pet on October 15th. I got the all clear from that and now I see my MO every six months, my RO is every 3 months, and my ENT is every 6 weeks. I am supposed to have scans every 6 months from now on. Hope this helps!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Have a question:

Are there no other "screening" methods they can offer for part of the scans they may normally request, and then do scans maybe annually? My reason being for asking is once one has received radiation your body has been exposed to sooooooooooo much radiation already, adding in all of the xrays and scans they did prior to tx ... now they do a PET or CT every 3 months or so which have more rays than a normal xray and I wonder just how much the body can take before producing more cancer simply from all of the rays received? Seems like a cycle that could cause trouble for some?

Perhaps this all we have to offer with technology so far ... but thought maybe someone has received care somewhere where they follow a bit different protocol that may prove to be safer, long term?


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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I think sooner than 6 months in-between is rare. Following my last treatment which ended in December 07, I had a PET/CT in April of this year. It was clear. I started having some chest/back pain two months later in June - just upon deep breathing. They sent me for a chest x-ray but it was clear. The pain persisted and had gotten worse, so last week they sent me for a PET/CT. It indicated metastasis to both lungs with PET/CT correlation on the findings. I've had a couple of people ask me why they didn't send me sooner for a PET/CT but I'd just had a clear one in April, so I think it was prudent to wait. I had no other symptoms except the chest pain, which wasn't constant. I'm not sure if it's different for CT alone as opposed to PET/CT fusion, but I've not heard of PET/CT being more often than 6 months unless they're trying to verify that a previous result was a false positive from healing tissue, etc.
-Steve


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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steve: so sorry to hear it has gone to the lungs. you have been thru a lot. keep on fighting and i will keep you in my prayers. what is their plan for treatment at this point?


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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My team at MDACC have opted do ultrasounds on my neck every 4 months rather than subject me to PET/CT scans. Their reasoning is that the type of tumor they ultimately removed (what they found was not consistent with the biopsy results but they can't dismiss what the biopsy said) is not an aggressive one and that the risk from radiation exposure in my case was greater than the benefits. They also place a great deal of confidence in the technicians and doctors who read the ultrasounds to catch any activity. It seems a to be a reasonable alternative for me...not sure it would be appropriate for others.

Susan

Last edited by Suess57; 11-04-2008 07:46 PM.

Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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Suess, that sounds like a great alternative than subjecting you to so much radiation which is harmful in its own right. it is sad that we have to look for cancer using cancer causing technology ... someday we can hopefully do it another way ... but for now that is what we have to work with. glad ultrasound works for your case though, that is awesome!


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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