| Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 | Hi Christine, I asked if Rad starts 3 weeks after surgery, the RAD doctor said something like worry about it later. I guess the surgeons will decide when it is suitable for RAD. I will ask him what particular RAD I will be getting. On their Radiation Oncology website, they list 1/ Image guided - IGRT 2/ Stereotactic Radiotheray - SRT 3/ Volumetric modulated Radiotheray - VMAT 4/ intensity modulated radiation therapy - IMRT
Hopefully I am getting the one with less scattering Thanks again for your advice
T4aN2cM0 left tongue SCC 10/17 Moderately differentiated SCC PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17 Perineural invasion present Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18 PET - NED 05/18 CT - NED 07/18, 10/18 CT - NED 02/19, 06/19 MRI H&N, X-ray chest - NED 10/19 MRI H&N NED 05/20 CT - NED 10/20 MRI - NED 04/21 CT - NED 10/21 CT - NED 4/22.10/22 CBCT - NED 10/22
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome Michael,
From what I know from previous neck dissections, the time between surgery and radiation is optimal between 4-6 weeks, but could be longer. Another thing is they try to keep the entire treatment package from surgery to radiation completion less than 100 days, more recent I heard around 89. If there is a delay they have time to work with, and could even increase the radiation if there are further delays.
The radiation types you mention are probably capable by one machine, namely by Varian, but all are external beam radiation.
IGRT uses a CT scan during treatment to monitor the tumor, such as shrinkage, and makes changes to its delivery.
SRT is more precise. There are other types brands that have names like Cyberknife, which is used often with brain cancer.
VMAT is an advanced form of IMRT where radiation is sculptured and delivered 360 degrees around patient. Another brand that is similar is Tomotherapy.
IMRT, Intensity Modulated Radiation Therapy, is what most if us get, and what you may too.
You mention one lymph node, but N2b is multiple ipsilateral lymph nodes, none greater than 6cm, so it's more than one node. Usually the effected nodes will get the same dosage as the primary, unaffected areas, around 54Gy or so.
I'm not sure if I read if you're having a neck dissection with the surgery? Sorry, just read yes. If there are negative prognostic factors from the surgical pathology, they may add chemo.
Good luck with the PET scan, and they will probably let you know of the dietary, exercise, medications, chewing gum restrictions for the test as they can effect it.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Michael, I forgot about things patients should do to prepare for PET scans. Thanks Paul for reminding me about that! Make sure you avoid exercise, carbs, drink lots of water and get extra rest the day before and the day of your PET. Talk with your doc, nurses or even the people scheduling the PET about important things you need to do so you get the most accurate PET.
Good luck!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 | Hi PaulB and Christine
We met with the RAD expert after PET-CT scan
The good news is that no other body parts are affected except the primary tongue tumor, one big left lymph node, and 2 right lymph nodes
They will continue their original treatment plan
Definitely I will have the neck dissection to remove those lymph nodes with the surgery
In my CT scan 3 weeks earlier, only one left lymph was showing positive. In just 2~ 3 weeks, MRI and PET-CT detected right lymph nodes not good either
The radiation doctor says VMAT , Volumetric modulated arc therapy which is the best, will be used on me
Thanks again for all your kind advice
T4aN2cM0 left tongue SCC 10/17 Moderately differentiated SCC PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17 Perineural invasion present Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18 PET - NED 05/18 CT - NED 07/18, 10/18 CT - NED 02/19, 06/19 MRI H&N, X-ray chest - NED 10/19 MRI H&N NED 05/20 CT - NED 10/20 MRI - NED 04/21 CT - NED 10/21 CT - NED 4/22.10/22 CBCT - NED 10/22
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks for the update! With the extra info you gave I can better understand your situation. That must be why you will start rads so soon after your surgery. I knew your doc sounded like they were on the ball To prepare, try to eat as much as possible especially all your favorites. Dont worry about putting on a few pounds. You will likely lose it quickly during your treatments and recovery. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | I'll chime in with the part where you mentioned you'll be able to drive. I hate to break it to you, but after the first week or two ...no, you probably won't. You will be exhausted, you will be undernourished (if you're like I was), and you will feel like crap. Go ahead and line up a person or two that you trust and whose company you enjoy, and have them on call for the time when you end up needing them. You might get lucky ... but most of us hit a point, it's like a switch flips, and kablooey! there's no energy for anything, and certainly no brain cells for driving. This is time to focus on YOU and your healing.
I managed to avoid losing teeth at that point, but now (a few years later) I get to have all mine removed. Which means hyperbaric oxygen treatments before we can even do the surgery, and long healing after. If you need it done first, it's not bad advice to go ahead and do it.
I too got my PEG tube up front, hoping not to need it, but it was necessary. I didn't tolerate the formula well, probably should've pushed harder for alternate stuff from the home nurses for that to keep my health up, but it was better than nothing. Maybe I just should've made everyone bring me milkshakes nonstop ... at least I would've gotten the calories, even if I couldn't taste them through the tube. LOL. They are pretty simple to remove (for once the doctors actually mean what they say) so keep it as long as you need it.
There's my two cents worth. You do what you need, of course. And we're all rooting for you.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 | Thanks KristenS ,
I can forget the idea of driving to a RAD session , then a Chemo-sesion
anyway, I had my 8-hour surgery. Most of the tongue got removed , and my tongue got re-constructed.
The surgeons said the surgery is a success. They archived clear margins. They removed the tumor and lymph nodes from the neck.
the lymph nodes from both sides were tested positive. The bad news is that my SCC is very aggressive. post-op analysis showed that the bad cells broke the capsules in lymph nodes.
Chemo-therapy is necessary for me now along with Radiation therapy.
I now have two tubes in my body PEG and Tracheotomy tube
I kind of like PEG
but I had problems after the surgery with breath /sleep. just after the surgery , my air-duct often got clogged by saliva / phlegm. It has to be manually cleared .
My long journey continues
T4aN2cM0 left tongue SCC 10/17 Moderately differentiated SCC PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17 Perineural invasion present Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18 PET - NED 05/18 CT - NED 07/18, 10/18 CT - NED 02/19, 06/19 MRI H&N, X-ray chest - NED 10/19 MRI H&N NED 05/20 CT - NED 10/20 MRI - NED 04/21 CT - NED 10/21 CT - NED 4/22.10/22 CBCT - NED 10/22
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