| | Joined: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Hi...I have a few questions following surgery and radiation..in January..i had surgery to remove a tumor on the roof of my mouth...flap was taken from my arm to reconstruct my roof. I had recurrence a month later and started radiation and chimo april 18th, finished all treatments june 6, 2013. Wondering if the swelling and numbness on the side of my surgery something normal post treatments (3 months) or if its something I should worry about. If anybody has gone through similar symptoms and would like to shed some light for me. Obviously going crazy worrying as i'm sure all of cancer patient go through.
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Welcome to OCF!
The answer to your question is not an easy one to answer. Alot depends on how much tissue was taken and if the nerves were affected. There could have been issues with the surgery. Right now you are still in recovery mode from your treatments. Everything will probably improve considerably over the next few months.
The very best thing you can do to help yourself with your recovery is to focus on what you can control which is good nutrition and hydration. Every single day push yourself to take in a minimum of 2500 calories and 48 oz of water. I know is sounds like alot but your body has been thru the war and needs to rebuild itself, this will burn calories at an amazing rate. Try to make your intake the healthiest you can, for many in your situation they relied on milkshakes and smoothies for a few months.
Hang in there!
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Survivor,
Yes, as Christine said, it takes time. Progress is measured in weeks and months. Typically though, from what I've read and from my experience thus far, it's going to be 6 months to a year before you return to what will be your new normal.
Positive thoughts and prayers
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | i had alot of tissue damage when i had my surgery...they took out the whole top half of my mouth...bone and everything and then sowed my flaps to my cheek for support...and they took 24 lymphnodes out of the right side of my neck...just trying to see what is normal post treatment and what is something to worry about...i guess anything is a cause for worry when you've had cancer...but all in all...i'm still alive and you have to take the positive in everything...i'm 13 weeks post radiation...i'm not having pain...just discomfort numbness and swelling...and i can feel that there is still tissue left from my tumor...but there is just numbness...no pain so that should be a good sign...if it was still malignant..it would likely still be growing and i would experience pain...is it normal to have tissue left behind after radiation...again..scary feeling...thanks for you help in advance...God Bless you all!!
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | You may be experiencing scar tissue. Whenever a part of a patients body has surgery there will always be scar tissue forming afterwards. This can be painless or it can hurt like heck. Depending partly on what was done and if nerves are involved. A cancerous tumor doesnt always hurt.
Im not completely certain what you are asking with "is it normal to have tissue left behind after radiation". Radiation will target the malignant tumor and kill the cancer cells. There still would be the areas near where the tumor was located that will be left after radiation treatments.
Recovery can take a very long time. It can be frustrating with the ups and downs and setbacks a patient goes thru. Try your best to focus on what you can control which is your nutrition and hydration. That is what will help you to heal and recovery from everything you have gone thru.
Hang in there, the worst is behind 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: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | You can also have scar tissue or dead tissue from radiation that takes a long time to dissipate or may not even dissipate. I have a small amount that I can feel where my cancerous neck lymph node was. It seems to have slowly gotten smaller and less noticeable to the touch now as time has passed since radiation.
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
| | | | | Joined: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Thank you so much for your replies...i appreciate it very much...
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | Joined: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Went for my PET scan this morning...was a good day until I had the scan done and started feeling a bit of pressure on a the side where my tumor was...had a surgery, chimo and radiation done...a lot of nerve damage...I am praying to god this is something commun...I constantly have a numbness and nagging sensation where the tumor was..gets worst when my Lymphedema kicks in... I can't shake the feeling that something is wrong...anybody ever had a bad gut feeling and had good results on the PET scan...i'm a bit of a wreck right now..with 2 babies at home (2 and a year old) i need to stick around for them...any input would be greatly appreciated...
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | Joined: Apr 2013 Posts: 319 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 Likes: 1 | It really sounds to me like the power of suggestion is working against you.
MY advice is to watch your thoughts, and when they start to stray into this territory (where you are imagining all the things that could be causing this strange feeling;) "interupt" your train of thought and tell yourself "Stop that, we will know what is going on when we speak to the doc about our PET."
Then, Immediately turn your thoughts to something that has no associations with your recent treatments or your body.
Take some time right now, and list a few subjects that fit this, and then keep the list with you. Work on this, it does work! It will help you keep calm.
Drink beer if all else fails! (just kidding, do not drink when you are having fear and anxiety, it will only make things worse)
Or get a book with a positive theme, and read it, but keep your guard up by monitoring your thoughts and keeping them from straying into this mental minefield of playing "I wonder if this could be..."
Don't do that. Be vigilant, keep your thoughts positive.
We program ourselves with our thoughts, be aware of what's going on in your head, and take command. It's your mind, they're your thoughts. Direct them in a positive direction.
And please keep us informed when your learn what the story is.
We care!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | 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 | The majority of post treatments scans are clear! Although, there can be SUV uptake that is usually, in my cases, deemed inflammatory responses, that were rulled out as cancer. Scans after that were another story, and my suspicions, palpable nodes were on target for suspicion.
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: 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 | Good Luck and let us know.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 |
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: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Sweeter words have never been said "PET SCAN CLEAR". What a year its been....wow...hope everybody else is having a good day...
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | 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 |
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: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Thanks Paul...
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | 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 | Great news! A joy for all of to hear. Go and enjoy life!
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: Apr 2013 Posts: 319 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 Likes: 1 | Fantastic news! Congratulations, you couldn't have share better news, thank you very much for sharing!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Yippee!!! What wonderful news, so happy for you!!!
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: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Its amazing how half our aches and pains are associated with fear and insecurity ....the last month has been nothing but hell for me and my family...the PET scan (waiting game for the results). The aches and pains seemed to be getting worst by the day...picturing the cancer still there and wondering if you have more cancer elsewhere....and as soon as I got my results...I've been sleeping, pains and aches have diminished in half...just wanted to share this for people going through the same thing...give you body a chance to heal...I know its hard..but don't let your thoughts be controlled by this disease...easier said than done...I know...but the brain is so powerful and if you give it positiveness...it amazes us all what we can do...also..the power of prayers...since my sickness...I've turned to god and a special man (Brother Andre)...hope this message helps a few people out there...the moral of this message is let your body heal and eat your calories per day and stay positive and if you are into to that stuff.. pray!!! have a good day all...oh and today is a special day...my daughters 1st birthday...and I got my results yesterday...couldn't of ask for a better gift... God Bless you all!!!!
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | Joined: Sep 2013 Posts: 21 Member | | Member
Joined: Sep 2013 Posts: 21 | Lymphedema question....for most that have it....Is it suppose to be painful ...just wondering...I've been suffering from it for the last few weeks...it is not terribly painful...just nagging sensation ...any input would be so greatful...thx
ORAL CANCER
SURGERY JAN 28, 2013
RADIATION, 38 TREATMENTS APR 18, 2013
| | | | | 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 | I've had lymph edema - it's not really painful, though with it you are swollen - lymphatic massage does help
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: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Good to hear Survivor39, Congratulations!
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | I haven't said hello to you yet, but I'm doing that now. I'm new to the forum having just been diagnosed myself.
Listen to what Bart says about the power and need for positive thinking. He's already been through more than many of us could handle, yet he stays strong and always has something positive to give to others.
I created a movies & TV series list in the Friends section to help take our minds off our troubles. Check it out.
We are following your story and responding to your concerns because ... we care ... and are willing to take the time to tell you so.
Be strong, enjoy watching those babies grow up. When you feel down, go wrestle and roll around on the floor with your 2 year old. His laughter is the best medicine you can get. Everytime I go visit my grandson's that's the part they and I enjoy the most.
Like Nike says, just do it.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | |
| Forums23 Topics18,305 Posts197,297 Members13,504 | | Most Online7,516
Mar 21st, 2026 | | |
|
