| Joined: Dec 2014 Posts: 8 Member | OP Member Joined: Dec 2014 Posts: 8 | I am a 72 yo male who completed chemo and radiation for oral cancer 18 months ago. Surgery was done and a very small part of the tongue was removed. My last PET scan wsa done on 8-18-15 and was NEGATIVE! My speech has been affected only slightly and I can eat almost anything (except spicy foods and most breads). I am having persistent problems in two areas: 1) slowly advancing fibrosis in the neck and throat areas--which seem to be causing me more trouble with swallowing, and 2) pain on the right top area of the tongue as well as on the right floor of the mouth. My oncology docs seem rather dismissive of these complaints and always remind me that "you are still alive" and "since you no longer have cancer we have nothing else to offer". Does anyone know what type of doctor one goes to with tongue and mouth issues? Quality of life is now the issue for Me. I am grateful to be alive and appreciate all the oncology docs have done. Thank you! | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Congrats on the NED! I'm two years post and my MO sort of dismisses the spasms I get in my neck from time to time, often when I do a big yawn or a lot of physical work that creates a lot of neck cramps.
My own view is this sort of post cancer treatment side effect is generally managed by your primary doctor. I've not seen my primary since all this cancer stuff as I really have no non-cancer related issues.
I'm thinking some PT may help at least teach me some exercises to minimize the neck strain.
God luck.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: May 2015 Posts: 18 Member | Member Joined: May 2015 Posts: 18 | I would second the PT/OT recommendation. My husband is 4 days post treatment and we have weekly therapy appointments to work of fibrosis prevention
Kate, wife of husband with May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58 06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin. 12/15 negative PT scan 5/16 negative PT scan 2/16 fitted with partial denture 12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime 3/17 completed 40 HBO dives. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I wish there was a one stop shopping for all our needs as few places may do. I would also recommend a Speech and Language Pathologist, SLP, as I'm sitting here after completing a weekly boot camp visit, in addition too, specific exercise based on my swallowing needs, physical examination and modified barium swallow. My ENT prescribed it.
There is also manual lymph drainage, using very light massage, if you call it that, as demonstrated on me by an occupational therapist, to help with lymphatic drainage, which otherwise can result in fibrosis. I went to PT, but was for walking, leg strength and balance, and again for my shoulder, so my neck was never really worked on, just what was prescribed.
Also, acupuncture may help, as advised by MD acupuncturist from MSKCC.
MSKCC has a doctor, Dr. Michael Stubblefield, that deals with rehabilitative cancer care such as Trismus, Fibrosis. He has a few articles, videos that may be of interest.
The problem for me is finding time to see everyone, I addition to all my other doctors.
I hope this helps.
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 | Unfortunately, many OC survivors suffer from the same long term side effects you described. OC is a horrible disease with barbaric treatments and many patients suffer well after treatments have ended.
I suggest finding a very experienced ENT who treats many OC patients. Also find a physical therapist who is familiar with OC patients, it may be a bit of a search to find one who has treated OC patients.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Hi Jimbob. I think your doctor is a bit mean dismissing your complaints. Did you have radiotherapy? Usually doctors are very onto swallowing problems that follow on from surgery and radiotherapy. The pain in tongue and floor of mouth could be some sort of sensitivity near the surgery scar/join. Where my tongue is scarred down I have a stinging sensation from toothpaste etc. After a broken tooth scratched it, it hurt for several weeks.
The SLP (SLT?) is the person for swallowing problems.
Quality of life after treatment is part of head and neck doctor's field, though - they do lots of research into it.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | As discussed, video from MSKCC, "Treatment for Radiation Fibrosis Syndrome." https://m.youtube.com/watch?sns=fb&v=cp5PGCUYRdE
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
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