#36692 07-13-2003 01:29 AM | Joined: Nov 2002 Posts: 6 Member | OP Member Joined: Nov 2002 Posts: 6 | Hello ... On June 16th I had surgery for SCC on the right inside cheek, extending down to the corner of my mouth, and under the upper lip.The pathology report indicates there was some SCC in two of the margins. I'm still in the healing process, and there's a gap at the corner of my mouth, so everything I drink leaks out. I'm in New Jersey for the summer and will be seeing a head and neck cancer specialist at HUP, in Philly, on Tuesday. How long do they usually wait following surgery to begin radiation? . I'd like to treat this aggressively but don't know what an aggressive protocol would be.
Thanks for any insight you can give me before I see the doc on Tuesday. This board is very helpful, as is my thyroid cancer board, and I sincerely thank you.
Jan | | |
#36693 07-13-2003 07:07 AM | Joined: May 2003 Posts: 4 Member | Member Joined: May 2003 Posts: 4 | Radiation will begin once you are sufficiently healed from the surgery. My husband's radiation hasn't begun (his surgery was June 5) because of a post op infection with a fistula that connected the base of his tongue to the incision in the front of his neck. The infection is gone and the fistula is healing but the infection had undermined the original incision and they had to open it up about 2 inches to let it drain. Now it is healing quickly but they have delayed the radiation for another two weeks. The radiation treatment will be 15 minutes a day on weekdays and the treatment will last 6.5 weeks. They suggested to us that this is aggressive treatment.
Hope everything goes well with your visit to Philly.
Cindy Spouse - SCC T3N2cM0 Base of tongue
Cindy
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#36694 07-13-2003 07:42 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Jan, from my experience and that of others, I think the usual waiting period for healing is about six weeks. And as always, waiting is the hardest time. Hang in there! Joanna | | |
#36695 07-13-2003 08:04 AM | Joined: May 2003 Posts: 41 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2003 Posts: 41 | I had to wait until I healed up from surgery, which took a little over 3 weeks at my age (mid 40's). The radiation oncologist started setting everything up (targeting, mask forming, trial runs) after 2 weeks, though. I had treatment once each day, and it consisted of getting positioned on the table, getting the mask locked down, and the radiation doses. I got one 15 second shot on the left, one on the right, and a 30 second shot from the front. I was in there there less than 5 minutes total. 73 O-O
Head and neck SCC TXN2bM0 stage IV Finished treatment 6/02
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#36696 07-13-2003 12:04 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | That's incredibly fast Powerlifter!
I recall being radiated non stop for about 35 minutes at a time. The machine was programmed to move about my throat and the collimator was constantly changing, shaping the beam and directing it to specific targeted areas (IMRT). Both sides were radiated but the bulk was to the tumor area on the right tonsil. It was quite an experience having 9 1/2 tons of machine rotating around your head (nothing like the "Gamma Knife" however), with the sound of high freqency, high energy electrity in the room. There is something about a machine that requires a foot of concrete and an inch of lead on all sides of the room and ceiling to protect the techs (they are usually always in the basement, so they don't have to shield the floor). Yet there is very little sensation that anything is happening during treatment. I wasn't crazy about the mask but it guaranteed precise alignment which is vital. I got used to it though and mainly slept through the treatments. The machine broke down several times during treatment and I had to make up about 3 days (pretty standard I understand -most companies attempt to have 95-97% "uptime"). They had a photo of Einstein sticking his tongue out on the ceiling above the machine and I alwaya thought that was pretty funny -it was a really goofy photo. The tech's were all saints and I still stop in and visit them. Theirs is a tough job dealing with this year round, patient after patient (and a lot of them grumpy). They also had a great sound system and I always brought my own music. They even had a vintage Lava lamp (of course this was in San Francisco). It was sad seeing the little kids there... Just a few radiation recollections.
I didn't have surgery so I can't comment on that.
Jan, the doctors have always told me that they are as aggressive as is possible depending on the circumstances unique to the patient. (I was concerned because Tx didn't start until almost 2 months after Dx). I wouldn't take it for granted though - I would still ask a lot of questions.
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)
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#36697 07-13-2003 04:08 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | First time around there was about a 3 week lag from surgery to start of radiation, but then I had to travel back to U.S. for personal business. Second time around they made the mesh mask about 3 days after release from hospital, then started the radiaton the following Monday, mostly because they had to wait for me to get the staples out. Surgery was pretty straightforward both times though, no longer lasting open wounds or such.
The treatmenst for me were always twice a day, aobut 15 minutes from the time I walked into the room until the time I walked out. The mask covered the whole head, so I didn't get to see anything, like Gary did, just hear the whining and such of the gears,. collater and such of the IMRT machine.
One tip, when the're doing the mouth bite, and then the mask, make sure your head and the little lollypop stick are in a comfortable position. First time around was ok, but second time around I didn't watch that little bit of minutia and treatments got a little uncomfortable in the jaw muscles as they were stretched a little wierd with all the appliances on. Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#36698 07-13-2003 07:43 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Bob, My mask covered my whole face and shoulders. I could still open my eyes with it on however. I noticed that some people had eyeholes cut out in there's.
Back in the 70's when I worked for Siemens Medical Laboratories in Walnut Creek, CA (now in Concord, CA), which built the "Mevatron" Series of Linear Accelerators, I watched many patients being treated on the machines.
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)
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#36699 07-14-2003 01:22 PM | Joined: Jun 2003 Posts: 4 Member | Member Joined: Jun 2003 Posts: 4 | My husband had extensive surgery in February and then started radiation six weeks later. Hopefully after we have the PET Scan next month it will not show up anywhere else. Becky | | |
#36700 07-14-2003 05:09 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | My surgeon was adamant about starting the radiation no longer than 6 weeks out from surgery (I was delayed a week due to a minor infection and it still annoys me!). The feeling I got was the sooner the better. My time on the table sounded like Powerlifters, left, right and center in under a few minutes. I got the "normal" MSKCC radiation treatment for my type of cancer.
Good luck, Glenn | | |
#36701 07-16-2003 01:50 AM | Joined: Nov 2002 Posts: 6 Member | OP Member Joined: Nov 2002 Posts: 6 | Thanks so much for all your posts and info. Unfortunately, my doc appointment got moved back to July 29 so I still don't have a clue as to what's coming next. I am definitely healing better now than the first two or three weeks, though. There were some stitches left in my mouth that were very painful, and I had those removed at an Urgent Care Center. Would you believe I made many phone calls trying to find someone who would remove those stitches, and nobody would. Finally I just walked in a medical office and the doc there was kind enough to do it. He hesitated at first, but then when he looked, he saw that they were accessible. It was almost instant relief, but he gave me an antibiotic in case there was an infection brewing there.
I'll keep you posted. Meanwhile, my thoughts and prayers are with you all.
Jan | | |
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