| | Joined: Aug 2011 Posts: 1 Member | OP  Member
Joined: Aug 2011 Posts: 1 | hi everyone,
it's 8 days until i have my surgery to remove what i think now will be at least 60-75% of my tongue, and 5 days until i start a combo of radiation and chemo. i'm really starting to freak out about it.
the worst thing is that my tumor has rapidly progressed in the past 2 weeks. i now have an ulceration that takes up the entire side of my tongue, and am on painkillers 24/7 to cope with it. i also can tell that the tumor has been growing because i am rapidly losing the use of what was left of my tongue. this has caused me a lot of trouble with eating/speaking and swallowing.
i would love to hear words of encouragement from anyone out there. this is getting really hard for me.
thanks for letting me vent.
Last edited by ChristineB; 08-25-2011 12:44 AM. Reason: unauthorized advertising
SS
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Eileen! It's going to be ok dear. Breath...in and then out and know that you'll get through it. What you should take away from the survivors on these forums..is that others have walked the path that you are on and are alive and helping others just starting down it. Talk to your Dr. about antianxiety meds, or score some medical marijuana and vaporize the hell out of it. Soon your anxiety will fade to giggles and the need for Doritos, donughts, Snickers and beef jerky...oh and another favorite of mine was gummi worms.  Keep your chin up, you got this Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | Hang in there, Eileen! I truly believe that the waiting is the hardest part. Soon you will be back in the battle, fighting that tumor and getting well. I'm so sorry that things are hard right now. I hope you feel much better soon.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Gee Eileen,
Glad you were able to vent.
LOVE YOUR AD FOR "SNEAKER CLUBS"!!!
I'M SURE EVERYONE HERE ON THIS SITE WANTS COOL NIKES!!!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | 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 | I know this can be super scary but actively doing something about it does help.while you're waiting maybe you should look into what you're facing. With regard to the radiation, chemo, and surgery...there are a lot of posts and Information here by members who've already been through it.
Am I to understand that they are starting you on rads and chemo - then operating? A few days later? That's pretty unusual as the protocol is usually surgery - healing time, Then radiation and chemo, based on your pathology results. Are you having a neck dissection? Have they talked to you about a feeding tube? 60- 70 percent is a lot, but there are people here who've had total glossectomies and gone on to do very well, they can speak, and eat no problem. Depending on how quickly you heal it may take some time but you can do it.
When my tumor was still there it was fairly large I had about a third of my tongue removed - and rebuilt- I assume hey are doing the same for you... Anyway - the entire side of my tongue was red and very sore so I know he feeling!
Good luck - try not to freak out. You will get through this!
Last edited by Cheryld; 08-24-2011 11:54 PM.
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: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | | National OC Advocate/Speaker Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 30 | Hi Eileen, Come up with a plan. What are your plans for when you are done with treatment? Will you write a book and tell your story? While you are recovering, how will you communicate? et that dry erase board, that pad in your purse....prepare with a plan of action. Tell your friends what you are looking forward to doing, and let them plan it so it happens. Plan that special weekend away trip to look forward to. Write letters to the ones you love most in this world with your deep feelings of gratitude.
You have to be the Lion and take control of what you can control. Don't let the anger and frustration eat away at you further. Frankly, it's a skill and doesn't come easily so work on it every day. I wish you strength and courage.
| | | | | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | You can do it! The fact that you are getting the treatment you need should be encouraging. It's gonna be a fight, but at least you CAN fight. God is with us friend. Every single moment. Give up your fear. Let it go and God will take it away. Trust him.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Eileen and welcome to OCF.
Treatment is scary...no doubt. Try to stay calm as much as you can and like Eric said...talk to your doc about what you are feeling. There are many patients that have taken something for anxiety, myself included. Don't be shy...ask for what you need.
I can promise you this....you will find the kindest people in the world on this site and we will support you through your journey. Hang in there and I look forward to seeing more posts from you.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jul 2011 Posts: 9 "OCF across the pond" Member | | "OCF across the pond" Member
Joined: Jul 2011 Posts: 9 | eileen how are you doing? | | |
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