| Joined: Nov 2012 Posts: 1 Member | OP Member Joined: Nov 2012 Posts: 1 | I just had surgery to remove part of my tongue and all the lymph nodes from the right side of my neck about 2 weeks ago. I go to talk with the radiation oncologist on Monday. From what I hear about the side effects of the radiation treatments, I really don't want to do this. Does anyone here have any advice on how to prevent the tooth decay? I think I might be able to manage the dry mouth issues. And are the mouth sores really bad? I'm more scared about the radiation that I was about the surgery. | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Hi, Welcome to OCF, ref your teeth check with your dentist and have trays made and flourude orderd for you and use them every night no matter how sore your mouth gets. Side effects very for each of us, your medical team will help you manage them. Good luck and best wishes!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Radiation is tough but there are many here who have been through it an survived just fine. Getting though it is not easy but we can help you with all kinds of tips and advice.
Before you know it the radiation will be over and life will be returning to normal, or what we call the new normal. All in all I can say that the radiation was very unpleasent for me but I got through it and you can too.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | I just had surgery 2 weeks ago and had all the lynmph nodes taken out of my neck also. This is my second time with SCC. The first time I had radiation was very unpleasant for me. Ask lots of questions. There are light medications you can take before each treatment if choose to. This will help calm you down before and during. Once they are over you will starting a new journey of recovery. Good luck. I see my oncologist this next week. I am not sure but I don't think I have to have radiation as part of this go round because they got everything in the surgery. Keep us posted.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | 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 | You should also have you're hearing checked if they are giving you chemo. Welcome.. Sorry you have to be here but there's lots of info. Take care.
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 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 | Everyone will experience radiation and its side effects in their own unique way. Some struggle from day one while others sail right thru. The best thing to do is keep up good nutrition with a minimum of 2500 calories every single day and 48 oz of water. Since you are recovering from surgery add some high protein whey powder to your liquids and that will help boost your protein intake and speed healing.
I dont think one of us 'wanted' to do radiation or any other treatment but it was necessary to save our lives. In a fight with cancer you just gotta do what is necessary and hit it with everything so it wont come back. You dont want to be put in a situation where you are thinking "I wish I had...". I know its not easy but it can be done and if you arent comfortable with your treatment plan talk with your doctors and ask them to explain in more detail why they feel you need more treatment or you can also seek out a second opinion.
Best wishes! 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: 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 | As suggedted see a dentist, preferably one with oncology experience, to correct any oral defects, and be fitted with a fluoride tray. If any teeth are extracted, the minimum healing time is two weeks before starting your treatments, and will probably need their clearance. You may also want to ask about custom radiation mouth guards, and bite stick, to reduce scatter radiation, and is used during your radiation treatment, which helps protect the teeth, and help reduce Mucocitis. If any teeth need to be extracted after treatment, you may need HBO treatments before (20) and after the extraction (10) to help prevent jaw necrosis.
Some general suggestions to prevent tooth decay, and maintain proper oral health since both arecrelated is to clean your teeth after each meal and at bedtime with a gentle tooth brush, some use infant type or sponge type with a prescription strength toothpaste. I used biotene products...dry mouth toothpaste, rinse and gel at night. Use floss, or use irrigator at low setting. Before bed rinse mouth with alcohol free mouth was to reduce bacteria and inflammation. Rinse mouth often with salt, baking soda rinse. Chew xylitol gum to help precent cavities. Sip water throughout the day, and use sugar free drinks, hard candies used to stimulaye saliva? I also use organic virgin coconut oil to swish in mouth for 20 seconds and swallow. It's supposed to be very good for the mouth care. A common product used during treatment is a "Magic Mouthwash" type rinse used to treatment many ailments.
Besides radiation, chemo causes mouth issues too like Mucocitis, and other infections from lowered immune system, and the same oral care will help reduce these risks, but some times prescription medications are needed to treat bacterial or viral infection, all of which has an effect on proper oral health too.
As you go along, you will find what adverse effects you have, some not discussed, more than others, and what is helpful. Everyone is different.
Good luck with everything.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | It is a good thing to be scared it means you are not going into this blindly.
My Alex found that the day before anything was the worst because that was the day he feared the unknown the most. On every occasion, (including radiation) he came out of his treatment/test/consult saying "that wasn't as bad as I thought it would be".
The big difference with surgery and radiation is that with surgery you go in feeling fine and come out feeling like hell. With radiation, you go in feeling fine (albeit scared to death) and come out feeling no different. Some people might even come out feeling better because the fear of the unknown is lifted. Alex commented that he looked forward to radiation in a perverse sort of way because he could visualise the radiation "nuking" the tumour which made him feel he was doing something. The backslide happens slowly so you have time to come to terms with it.
Just think of how many thousands of people have gone through this and made it out the other side. You can do it too!!
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Hi - and adding my welcome. How did things go with your RO on Monday? Please let us know how you're doing!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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