New to CSN Tongue cancer
RinMinn
Member Posts: 18
Hi all,
I am new here. I just had surgery to remove a part of my tongue. The pain I can deal with it's the sounding like Sylvester the cat I can't get over! :-)
Anyways I was wondering if there are any others out there that are scared that the Cancer will come back. I had not even thought about that since the surgery (March 2012). And boy did it hit me hard today. Does anyone have any coping ideas? or avenues?
Thank you,
Renee
I am new here. I just had surgery to remove a part of my tongue. The pain I can deal with it's the sounding like Sylvester the cat I can't get over! :-)
Anyways I was wondering if there are any others out there that are scared that the Cancer will come back. I had not even thought about that since the surgery (March 2012). And boy did it hit me hard today. Does anyone have any coping ideas? or avenues?
Thank you,
Renee
0
Comments
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Hey Renee
I can understand the sounding like Sylveste thing. Between the floor of mouth resection and reconstruction I had last year, and the radiation i recently completed, I was for a bit so mush-mouthed I resorted to writing notes at home, completely swearing off conversation for about 2 months. That does get better with time. OTOH, the worry part of things, that's where lots of us have to focus a bit of our attention and work on defense mechanisms.
It sounds like you must have had a favorable situation, as you don't mention chemotherapy or radiation. That implies you have a good prognosis. It also gives you a safety net in case you have the misfortune to get a reoccurance. It also asks the question of what they are doing for you in terms of follow-up.
I've had my own series of adventures with squamous carcinoma. I won't bore you with the details, but you can read about them on my bio if you have the inclination. I've had recurrance problems, and have been through treatment more than once, but have managed to handle the worry part of this disease pretty well. The only reason for that is that I've learned to live my life within just the day i'm actually living. I leave tomorrow to take care of itself. That's easy to say, but takes a bit of practice to really do in any consistent way. There are lots of ways to accomplish this. Meditation is one, religion is another, 12 step groups are very good for this. And on and on and on....
I wouldn't dream of preaching to you or anyone else how exacttly you should do this, but if it is really driving you nuts to think about the future, then something like this may be of real benefit. Welcome to the board. I'm sure others will chime in soon.
Pat0 -
Suffering Sucatash
Welcome Renee...sorry couldn't resist..hope you have a sense of humor, you're gonna need it here..LOL.
Not sure of all your specifics, like Pat mentioned, you didn't really mention chemo or rads, so hopefully you were spared that torture....but it is what it is.
As for fear of recurrence, I don't think anyone here can say it doesn't cross their mind on occasion. Especially when you get something going on that seems to hang around a little longer than you think it should.
Hopefully over time and succesful scans, that will minimize over time.
Best,
John0 -
The answer is all around you
Renee,
Yes, you will, as many do daily wonder the same thing, will my cancer come back. Now the tricky part, knowing and moving forward each day. Each day that I shave and see my scars, I am reminded of what I have been thru, like you, part of my tongue removed along with a radical neck disection.
I think about it for a minute and decide that it will not chain me down, hold me back or any other thought. Sieze the day, each day one at a time. As Pat and John mentioned, the further out you go, the thoughts are there, just not as strong. Most of us will glance over our shoulders, but look forward mostly.
My Best to You and Everyone Here0 -
Thank you
I want to thank everyone of you for replying to my post.
LOL and yes I do have a sense of humor!
You are all so brave and have wonderful outlooks. I will keep them in mind.
As far as chemo or radiation goes I was fortunate to catch it in stage one. But they still removed a good portion of my tongue. I have to do the monthly trips back to the doc.I have so many questions to ask.
Boy what I would do for a crunchy bowl of nachos!!!hehehe or to eat a sandwich in less than 45 min!
Thank you once again!
God Bless you all &
GBA (God Bless America)
Renee0 -
Welcome!jim and i said:Welcome
Sorry you have to be here but this is the place to be. So happy they caught yours early.
Debbie
I am new here too, and it seems we have some of the same fears and apprehensions. I've read hundreds and hundreds of posts on here and I am so inspired by the tenacity of this group.
Kathryn0 -
Hi Renee....
You have hit the jackpot finding this group of people...I found them just recently myself, and do not go one single day without being infused with courage, inspiration, and a good belly laugh...simply by checking in here on a daily basis...
The Dr.'s are good at curing our disease...but when it comes to the details...the tips and tricks of treatment...or the warm blanket when our emotions and fears try to get a foothold...this is a safe place to land when the goolies try to creep into your head.
I'm SO glad you're here!
p0 -
Hi Renee....
You have hit the jackpot finding this group of people...I found them just recently myself, and do not go one single day without being infused with courage, inspiration, and a good belly laugh...simply by checking in here on a daily basis...
The Dr.'s are good at curing our disease...but when it comes to the details...the tips and tricks of treatment...or the warm blanket when our emotions and fears try to get a foothold...this is a safe place to land when the goolies try to creep into your head.
I'm SO glad you're here!
p0 -
I do
I do have the same thoughts you had. as mentioned in prior posts most hear go thru it and continue to go thru it. for me i learned along time ago just not to dwell on it. easy to say and hard to do i know and over time rest assured it will get easier. my doctor's told me the first year post treatments is the most probable time, stay focused with your positive mental attitude and give the heavy thoughts to God as he will take care of it for you.
Welcome to the your new home, everyone here is family with unconditional support, experience and knowledge.
hugs
john0 -
Thanks!fisrpotpe said:I do
I do have the same thoughts you had. as mentioned in prior posts most hear go thru it and continue to go thru it. for me i learned along time ago just not to dwell on it. easy to say and hard to do i know and over time rest assured it will get easier. my doctor's told me the first year post treatments is the most probable time, stay focused with your positive mental attitude and give the heavy thoughts to God as he will take care of it for you.
Welcome to the your new home, everyone here is family with unconditional support, experience and knowledge.
hugs
john
Thanks to all of you!
I see some of you are on other discussion boards too. That is cool.
I hope everyone of you know that just those kind words you send to me mean so much.
Thank you
Renee0 -
Hi Renee,
Sorry your going through this, it sucks! Yeah I do worry about recurrence. My cancer is a mean bugger with a so so 5 year survival rate. I also have to go in for a biopsy on my tongue very soon and I won't know it cancer until I wake up. If cancer I will wake up with part of my tongue missing and another skin graft. I have to go in every two months to my surgical onco and every 6 months to my radio onco. I'm always having some test done, either MRI's or PET scans, that with the constant doctors appts. I don't get a break for very long to let my emotions heal. I'm up and down like a damn yoyo. I find meditation helps, soft soothing music. Walking helps too. I have lots of anxiety. I find for me that I prefer holistic healing for my anxiety is better than traditional. Like taking valium or anti depressants. I guess the longer we go without a recurrance, then we'll start to let go of some of the anxiousness. Good luck to you! Shelly0 -
Hi, RinMinn!
glad to hear your cancer was caught early. Wish I had some wise advice on not fearing a recurrence. I know that worrying won't accomplish anything but taking part of your happiness, but don't know how to stop it. Like many, I worry a lot less the farther out I am from treatment. When I do worry about something, I try to distract myself - sometimes it even works. I also used to visit an in-person cancer support group hosted by the Cancer Support Community (I think that's the name now - used to be "Wellness Community" - they merged with Gilda's Club).0 -
We all do it differentlyPam M said:Hi, RinMinn!
glad to hear your cancer was caught early. Wish I had some wise advice on not fearing a recurrence. I know that worrying won't accomplish anything but taking part of your happiness, but don't know how to stop it. Like many, I worry a lot less the farther out I am from treatment. When I do worry about something, I try to distract myself - sometimes it even works. I also used to visit an in-person cancer support group hosted by the Cancer Support Community (I think that's the name now - used to be "Wellness Community" - they merged with Gilda's Club).
It's ironic to visit a cancer board daily and have it be therapeutic. Perhaps a crutch of sorts or as Phannie put it, a good landing place. Ultimately you have to learn to live with it on a daily basis. How true that we all are reminded daily by the mirror, injury is injury, and we don't forget. I did not cope well and had a very difficult time getting my head around cancer. I think I was to the far extreme needing several psychologist visits,several psychologists, and anti anxiety meds. The important thing is that wherever you fall on the scale, you can get better. My best in your journey. Visit often.0 -
WHAT THE FUTURE HOLDS
I to am new to this community, and I have not even got a complete diagnosis yet on where I stand, so I guess it will be a while before I worry if it comes back, now Im just working at dealing with it. But I will say if I had not found this website I know I would just be totally freaked out. Because the Doctors as good as they maybe will not give you what you need at this time... Google can scare the heck out of you if you try to play Doctor. So I too come to this board 2 or 3 times a day as does my wife.. from the initial knowledge of knowing I had cancer to the MASK freakout, to my Fine Needle yesterday, I had these fine folks come to my (not overstated) RESCUE. So for me I go to God first thing everyday and H&N second....0 -
I ditto "ditto"!!!ditto1 said:WHAT THE FUTURE HOLDS
I to am new to this community, and I have not even got a complete diagnosis yet on where I stand, so I guess it will be a while before I worry if it comes back, now Im just working at dealing with it. But I will say if I had not found this website I know I would just be totally freaked out. Because the Doctors as good as they maybe will not give you what you need at this time... Google can scare the heck out of you if you try to play Doctor. So I too come to this board 2 or 3 times a day as does my wife.. from the initial knowledge of knowing I had cancer to the MASK freakout, to my Fine Needle yesterday, I had these fine folks come to my (not overstated) RESCUE. So for me I go to God first thing everyday and H&N second....
I also am so uncertain of the future, but I know who holds the future!! AND I'm SO thankful for these boards and the knowledge that I have. I'm going for my consult today with 2 pages of questions that I've gleaned from these boards and the courageous folks that are in this battle!! Thanks to one and all!!!!0 -
Is today consult day Mrs Sarge?Mrs. Sarge said:I ditto "ditto"!!!
I also am so uncertain of the future, but I know who holds the future!! AND I'm SO thankful for these boards and the knowledge that I have. I'm going for my consult today with 2 pages of questions that I've gleaned from these boards and the courageous folks that are in this battle!! Thanks to one and all!!!!
Hope your consult today goes well.
You have neen on my mind and in my heart these last few days.
Have courage.
Mark S.0 -
Yesmls351w said:Is today consult day Mrs Sarge?
Hope your consult today goes well.
You have neen on my mind and in my heart these last few days.
Have courage.
Mark S.
I'm leaving the house in 15 mins. Super anxious but hopeful....thanks for thoughts!!0
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