| Joined: Sep 2013 Posts: 21 Member | OP 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: 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!
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 | OP 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: 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 | 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 | OP 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 | OP 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 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | 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
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