| Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | How do you know which doctor to go to when you are having problems after completing treatments? John is 2 years out of treatments. He never complains about the little aches, pains and chronic dry mouth that he has. I know him so well and know when something is bothering him. He has seemed distracted the past few days. Last night I finally confronted him and asked him if there is something bothering him. He told me that for the past three weeks his gum and jaw have been bothering him. It is even painful when he eats soft foods. He told me that he called our dentist and went to see him last week. He did an x-ray of the area and an exam and couldn't see or feel anything. He told him if the pain was still there in two weeks to call him back. John said the pain radiates into his jaw and his gum is sore. He doesn't feel any better since he saw the dentist last week.
I know that this could be radiation damage so I'm not hitting the panic button yet. Should he see the radiation oncologist or ENT? He had an exam with the ENT September 6th. He scoped him and felt around his neck etc. and said everything looked good. I just hate having this uneasy feeling in my stomach. I guess I'm just confused which doctor to pursue this with since he has so many doctors.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there - id say whoever can get you in the fastest. I'm sure it's nothing as well, but have it checked out to ease your mind. Technically I think your RO is in charge. But sometimes the ENT is a go to man. Good 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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Wanda,
I agree with Cheryl-- the RO is my first choice. It is scary that the effects of radiation can persist long after treatment has ended. See what the RO says, then pursue the ENT if you still feel uneasy. Whatever way you choose, be vigilant and be the squeaky wheel.
My best to you and John- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | My ENT is my go to guy, I never see either of my oncologists anymore, not that I would mind as they are both amazing. My MO was head of the show during tx although my ENTs office coordinated everything. My ENT would never prescribe, RO only if I couldn't get in with my MO and then after tx was urged to pick a GP yet continue to have follow-ups with my ENT.
Really though I think its whoever you feel most comfortable with or who you can get into first.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Ron has been going to his ENT for his checkups. Come to think of it he used to go to his Oncologist every 6 mo for his Non Hodgkins checkup but since this cancer came along he has faded from the picture since the ENT does the PET scans now and it just goes into Ron's chart in the computer system of the Clev Clinic. Ron really likes his ENT calls him by his first name too, he figured all he has done on him he can. He has a Medical doc but he don't like them, cuz they are cancer experts plus it's a female too. lol
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | 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 | Hi Wanda! Sorry to hear John is having a problem! There are all kinds of bothersome after effects with OC. Hope this John's problem is something very minor.
Im another one who goes to their ENT. For about a year after I had my mandibulectomy, I saw him weekly then every other week. Now, I have finally advanced to see him every other month. I see my MO every 6 months and my RO rarely, havent been there for over a year. For my situation, my ENT is my go to doc. He then refers me to all kinds of other places if my issue is something out of his field.
Last edited by ChristineB; 10-12-2011 09:42 AM.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi. John has an appointment today at 1:15pm with his ENT. The pain in his jaw and neck are still there. HOpefully it is nothing more than after affects from the radiation.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Good luck with your appointment!
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | How did the appt. go. I was just getting ready to post about the same issue with the pain.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Unfortunately - no answers. He gave John a script for a CT Scan but doesn't seem to think that is necessary. John has a script for an ultrasound for the cartotid (sp) artery just to check and the CT Scan. He said he will get the ultrasound but doesn't know about the CT Scan. This is so frustrating!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
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