| 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 | Sounds like a good report, and better than you probably anticipated. As far as radiation, time between surgery and radition is usually 4-6 weeks, if healing is good. Longer is not better, as the whole treatment plan should be done under 100 days, in the best of worlds for better control. The time from any teeth extractions is usually two weeks before radiation, chemo, and will need the clearance of the dentist to start radiation.
Good luck.
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 | Ambra, please check your private messages (PM). Look towards the top center next to the My Stuff tab. Click on the tiny blinking envelope. I have sent you a message to help you with the forum and making a signature. A signature if very important in helping us to help you. Detailed instructions are in the link included in the PM I sent.
Thank you! 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | They generally try to fit the dental work in. Before treatment so in a few weeks I imagine.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hi Ambra, and welcome -- Sorry for your diagnosis, but so glad you found us.
If you have metal fillings or crowns, your dentist can make mouth guards that you wear during radiation to prevent radiation from bouncing off the metal and burning nearby tissue. You may want to ask your RO if he/she thinks you should have them.
We are rooting for you, stay in touch!
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2013 Posts: 94 | Hello again, and many thanks to everyone for all the answers provided. I apologize for only making the signature now, this has been a huge emotional roller coaster for me and I am still very much struggling with accepting everything that is happening. I have managed to find a bunch of dentists and commenced the treatment on Friday with a root canal. I have an oral surgery scheduled for Thursday to extract three wisdom teeth,under general anesthesia, that I am quite scared of. I have an important question regarding fluoride trays; I have been reading here on the forum how important they are. However, my (new and unfamiliar) dentist (who does not seem too familiar with RAD)claims that they are not necessary and he does not make them. He told me to use fluoride mouth wash such as ACT and said he would prescribe me a perscription-strength fluoride toothpaste and that should do the work. Is he correct or should I absolutely insist on fluoride trays and find someone else who will make them for me? I assume that RAD will start in 2-3 weeks. Another question that I can not seem to shake of my mind since reading the post surgery biopsy report is about the only node that came back positive for cancer that is in level IV. Is there any logic about it being in level IV, far away from the tonsil as opposed to level II where I expected it to be? Does the tonsil maybe somehow drain that way? I am very worried about this indicating a spread further than originally thought, and the possibility of some cells are already in the lungs but not big enough to be detected on PET? I am only meeting the RO on Tuesday to learn details about the TX but it did not sound like they were planning to do chemo, RAD only.
Many thanks!
36, female, left tonsil HPV+ SCC, T2N1 8/28/13 SCC in left tonsil 9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed 9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL 10/28/13 rad begins, 30 treatments, tomotherapy 12/09/13 radiation ends! 2/10/14 papillary thyroid cancer 2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst 2/27/14 thyroidectomy 3/5/14 pelvic ultrasound
| | | | 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 | Get the fluoride trays, prescription fluoride! I didn't, for a few reasons, one my dentist didn't recommend them, and I went with the flow, being I didn't want any medications that can cause illness after being in the hospital 187 days. Now ALL my teeth need to be extracted two years after radiation, a 2nd course of HBOT with 30 dives, and this is sometime after my neck dissection, and radiation next month. I currently have a gum infection, abscess, in the jaw line, which can compomise having my surgery. I'm taking strong antibiotics 3x a day, which risks c-diff, and I'm more susceptible since I had it before, and that can kill you, besides infections going septic. Cancer could be in the other nodes, and not detectable, could be skip metastases or biopsy didn't get a good sample slide with cancer. They are going to radiate from your top lip, down to your shoulders. There are over 300 lymph nodes in the head and neck, most microscopic, so I don't think they get them all out, and every one of the three neck dissection I had, two radical. always had more to remove. Lymph involement further down the lymph chain has its own prognostic factors, after that V, maybe lungs, but cancer can go anywhere. Mine started in II, and then III, IV, V, and was in the skin, neck muscle, and it may be good you had the neck dissection, but would think they would do chemo too, HPV or not, since there are no guarantees how it will behave, and some HPV are aggressive, acting like tobacco caused cancer. Good luck.
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 | Radiation is very hard on your teeth. Without using flouride trays you run the risk of destroying your teeth and eventually losing them.
Shortly after finishing my 2nd round of OC, I ended up losing my teeth due to radiation damage. I am not a candidate for implants or even dentures so will live the rest of my life without teeth.
I suggest you immediately find a new dentist! Any dental professional who is not familiar with treating OC patients is not experienced enough to continue to treat you. Especially with the info they are already giving you. They are causing you and any other OC patient that comes thru their doors harm by being ignorant about OC and radiation. If I were you I upon getting a new dentist, inform your current dentist exactly why you left their practice. Ignorance is NOT an excuse! They are a professional and their lack of knowledge could cause you or other OC patients great harm.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I started using my trays 1 month pre rad and continued for 5 years post Tx and I never had or have any gum or teeth problems and I'm 7 years post Tx now. Granted I had really good oral hygiene pre cancer and no one can predict any outcomes with this cancer or it's Tx and I'm not a dentist and perhaps yours is correct but at least I think they helped me.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey there.... Ambra... cancer is unpredictable. They have a good idea normally where it will travel, but we are all individuals and we do not always follow the same path. SO it is possible to have a level IV node involved and no indication of others. What Paul said was correct, in that it could exist microscopically in other nodes and not be detected on a scan, or it could have been in the nodes and resolved itself (sometimes happens if your immune system gets ahead of it) or it could have jumped a bunch of nodes, or it could be a false alarm... I am not sure if it was biopsied or detected on a scan only but maybe its inflammation. Regardless, if you are going for rads it will be in the radiation path so it will likely be nuked. I can tell you I had a friend who had cheek cancer and they operated removed 20 nodes and patched her cheek (they removed the tumor and rebuilt it) and her 20 nodes tested negative for cancer so they thought she was good to go and did not recommend rads and chemo - a few months later another node popped up, and when she went back in they removed another 20 nodes and all had cancer. So it does happen. My question about all of it was - why didn't they remove more nodes to begin with, did they take the right nodes? (you have to assume your ENT knows his tuff - but that's not always the case) or did the pathologist not pick up the cancer in the first set of nodes? Or was she really an anomaly - and it genuinely skipped all those nodes. NO one knows for sure. This is why we always say - make sure you are being treated at a Cancer center that knows their stuff and deals with it every day. Also with regards to your dentist - there are dental oncologists out there. You should be looked at and treated by a dentist who handles patients with oral cancer. My hospital has that available in house. I even go to them now for cleanings and check ups.
hugs and best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2013 Posts: 20 Member | Member Joined: Sep 2013 Posts: 20 | A great dentist who focuses on cancer patients is 100% critical, IMO. It takes a little work but once you've finished, you don't have to do it again. For a good dentist who knows about cancer, I would ask all your oncologists first. Ask which dentist they would go to, or send a loved one to, in your situation. Explain you want the best care. Then would ask your family practice/regular doc that you are familiar with (if you have one) if they know of any good dentists who could help you. Get several names if you can, then look them up & call each dentist office. Ask the receptionists specific questions about the dentists capabilities/history -- this was a great strategy for me as it led to me talking to several dentists directly over the phone for free before making any appointments! Ask about insurance. Check your insurance policy's website and be sure who you pick is covered. (Fluoride trays are "cosmetic" w/ our insurance so we have to pay for that.) Look online only AFTER you get the name from a trusted source, not before (saves time.) Any time a new issue came up this year, we've used this strategy to get to the next doctor we needed. We drive 2.5 hours to see my husband's dentist in KC because we know he is the best. We love him. Here's a page that kind of shows why he's special and not the typical dentist most people see. Not advertising, by the way! Just sharing Hope that's allowed.
Last edited by davidcpa; 10-01-2013 06:04 AM. Reason: I removed the address mainly because it states NOT ACCECTING NEW PATIENTS
CG to husband- 1/2013 lymphoplasmacytic lymphoma found 5/2013 1st round chemo stopped due to hole in hard palate. 6/2013 SCC found in maxillary sinus/hard palate. 7/2013 Removed tumor from palate + neck dissection T3NO. Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
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