Posted By: survivor39 few questions - 09-07-2013 11:39 PM
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.
Posted By: ChristineB Re: few questions - 09-08-2013 02:19 AM
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!
Posted By: fishmanpa Re: few questions - 09-08-2013 11:41 AM
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"
Posted By: survivor39 Re: few questions - 09-12-2013 06:07 PM
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!!
Posted By: ChristineB Re: few questions - 09-12-2013 07:45 PM
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.
Posted By: AndrewL Re: few questions - 09-12-2013 11:06 PM
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.
Posted By: survivor39 Re: few questions - 09-13-2013 12:10 AM
Thank you so much for your replies...i appreciate it very much...

Posted By: survivor39 Re: few questions - 09-16-2013 06:25 PM
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...
Posted By: Bart Re: few questions - 09-16-2013 06:42 PM
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!
Posted By: PaulB Re: few questions - 09-16-2013 06:44 PM
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.
Posted By: davidcpa Re: few questions - 09-17-2013 12:59 PM
Good Luck and let us know.
Posted By: Mamacita Re: few questions - 09-17-2013 06:47 PM
Hope you get good news!
Posted By: survivor39 Re: few questions - 09-18-2013 03:09 PM
Sweeter words have never been said "PET SCAN CLEAR". What a year its been....wow...hope everybody else is having a good day...
Posted By: PaulB Re: few questions - 09-18-2013 03:10 PM
Congratulations!
Posted By: survivor39 Re: few questions - 09-18-2013 03:18 PM
Thanks Paul... smile
Posted By: Uptown Re: few questions - 09-18-2013 03:19 PM
Great news! A joy for all of to hear. Go and enjoy life!
Posted By: Bart Re: few questions - 09-18-2013 10:31 PM
Fantastic news! Congratulations, you couldn't have share better news, thank you very much for sharing!

Bart
Posted By: Mamacita Re: few questions - 09-19-2013 09:14 AM
Yippee!!! What wonderful news, so happy for you!!!
Posted By: survivor39 Re: few questions - 09-19-2013 03:23 PM
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... smile smile smile God Bless you all!!!!
Posted By: survivor39 Re: few questions - 09-20-2013 09:13 PM
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
Posted By: Cheryld Re: few questions - 09-20-2013 10:15 PM
I've had lymph edema - it's not really painful, though with it you are swollen - lymphatic massage does help
Posted By: sunderwood1111 Re: few questions - 10-03-2013 08:12 PM
Good to hear Survivor39, Congratulations!

Posted By: n74tg Re: few questions - 10-08-2013 09:18 AM
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.
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