| Joined: Dec 2014 Posts: 3 Member | OP Member Joined: Dec 2014 Posts: 3 | Hi everyone, I'm a mid sixty year old facing something I thought would never happen again, especially after a negative bx in 2008. Six months ago I was having soreness midway on the right side of my tongue. A concern because of previous history. My ENT physician thought the problem was from my teeth rubbing against the tongue, my dentist checked and determined it wasn't....back to ENT and a round of antibiotics and triamcinolone. Soreness became worse and lump in neck appeared. Biopsy results last week of recurrent cancer was quite a shock. Now facing possible removal of half my tongue and free forearm flap. Scary to say the least. Also, removal of all mandibular teeth for later radiation therapy to both sides of neck. Physicians and staff of Tumor Board at local hospital were very thorough with facts about treatment but would appreciate patient experiences and advice.
SCC rt surface of tongue 2002, resection of tumor w/neck dissection. No adjunctive therapy. Bx in 2008, negative. Bx in 2014, rt surface of tongue w/positive submandibular lymph node. Surgery scheduled 12 Jan 2015 followed by radiation therapy.
| | | | 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 | Welcome to OCF! You are in the right place to get info and support from fellow OC survivors and caregivers. If you can get a second opinion at a comprehensive cancer center that would be a good idea. Let me know if you need the list and I will look it up for 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: 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 | Twelve years later a recurrence. That's terribly bad luck.
The surgery is doable though as I've had the forearm flap procedure twice. Hemiglossectomy allows speech and eating to proceed in a near normal manner. It's no picnic but after a couple of weeks on both occasions I was feeling well again. The worst part for me in the tongue surgery was the uncomfortable tracheotomy. On a more positive note, you get intensive nursing care with a trache and it's all over in a week or so.
Wishing you well.
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: Dec 2014 Posts: 5 Member | Member Joined: Dec 2014 Posts: 5 | My husband just had about 1/3 of his tongue removed and a free forearm flap repair in July. His least favorite part was the tracheotomy after the surgery which was in for a couple of weeks. They followed surgery with radiation and chemo which we finished in September.
It was hard (really, really hard some days) but, the swelling is coming down now and he is speaking and eating well. Some taste is coming back too. His speech is different, but I have no trouble understanding him. He takes longer to eat than he used to as well.
I know when you are looking ahead it seems overwhelming, but just take it one day at a time...and sometimes one hour at a time. Soon you will be looking back at it and on you way to recovery.
Last edited by shcoop; 12-31-2014 02:44 PM.
Caregiver to Bill 45 yo Dx Sep 2012,BOT,SCC,-HPV, T1 NO MO Surgery w/ rad neck dissection clr margins Trmt at local hospital Recurrent Dx Mar 2014, BOT, T2 NO MO 9 cispltn, 3 docetaxel, 30 IMRT, surgery with flap repair, clr margins Clr CT 11/14 Trmt at MDA
| | | | Joined: Dec 2014 Posts: 3 Member | OP Member Joined: Dec 2014 Posts: 3 | One month post hemiglossectomy, removal of two positive lymph nodes with forearm free flap graft, removal of lower teeth, ng tube replaced by PEG in the past week, trach remains in place, I had a positive experience with hospital staff. Tomorrow I begin 6 weeks of radiation therapy 5 days/week with adjunctive chemo 1 day/week.
My tongue remains swollen. The doctors have said that my tongue will reduce in size by the end of radiation. Has anyone else experienced this? Speech therapy is not scheduled until the end of March.
I practice swallowing with 10 spoons full of thick pudding or yogurt, etc. 3 times a day. I am trying to maintain water and caloric intake but it becomes a bit too much on some days. I consume 7 cans of Jevity 1.5 daily and try to keep my water intake near 64 ozs. I am having difficulty in adjusting these throughout the day. Does anyone have advice on how to best manage this.
Thanks for any feedback.
SCC rt surface of tongue 2002, resection of tumor w/neck dissection. No adjunctive therapy. Bx in 2008, negative. Bx in 2014, rt surface of tongue w/positive submandibular lymph node. Surgery scheduled 12 Jan 2015 followed by radiation therapy.
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | on the diet - you are doing amazing. you can back off 16oz on the water. 64 is more than you need.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=donfoo]on the diet - you are doing amazing. you can back off 16oz on the water. 64 is more than you need. [/quote]
An instant 25% reduction in water is not sound advice. The body doesn't adjust quickly, especially when under extreme stress.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | Water can't hurt really (more bathroom visits..) I drink a lot of water daily.
Rads will not be fun but you will get through it. My tongue took a while to deflate even after rads... but a few years out its much better (almost normal)
hugs and welcome. Look up rads and see what you are in store for it helps to plan in advance for the worst and hope for the best...
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 |
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Pay particular attention to the comment about the brain adjusting to water consumption. That is exactly why you wouldn't suddenly cut back, especially during treatment. You prevent the body from being able to function efficiently while processing the waste created by the toxicity of the treatment. The lymphatic system starves and even eosinophils can't carry dead cells through the blood.
Add to that the necessity of muscles and joints to maintain fluids, especially during treatment, which results in pain.
4 liters in an hour would kill just about anyone.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | |
Forums23 Topics18,168 Posts196,925 Members13,103 | Most Online458 Jan 16th, 2020 | | | |