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#21944 01-13-2007 12:40 PM
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Just diagnosed yesterday with sqaumous cell carcinoma of the cheek with small amount on tongue. Do not know what they will do. I worry about leaving my family alone-and I cannot find any information about recovery when you wake up-is it awful and you cannot breathe? Sound like a baby but I have already been through this with my first husband when I was young with a brain tumor and lost him to it. I am terrified of hospitals and the unknown and just cry like a stupid. I am so worried about my husband because we are all we have. Sorry to go on, just wanted to talk


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
#21945 01-13-2007 02:55 PM
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Peace,

We need to know how they say they will treat you before we can comment. Treatment options will include surgery, chemo and radiation. So lets us know as soon as they make their recommendations. I see you are from Va. Where were you diag and where will you be traeted?


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.
#21946 01-13-2007 04:20 PM
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peace4uall,
Cry, rant, yell etc...you are welcome to do all of that here. Welcome to the site, but sorry that you have come. This is the place to get support and any information you made need. Like David said let us know what your specific concerns/questions are and I'm sure there will be no shortage of comments coming your way. You are not alone. I had the very same thoughts that you are having.


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#21947 01-13-2007 06:19 PM
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Dear Peace, O.K., now you need to take a long, deep breath, grab your husband's hand and say "We can do this, we will get through it together". Repeat it about 10 times and then hug for a really long time. Panic is normal AND getting your resources together, beginning now, is your 1st step toward gaining control over the panic. Please read the "Getting through it" topics here and start asking as many questions as you can think of. AS far as being terrified of hospitals- if your husband or someone else very close to you can be there with you, you will be o.k. at the good hospitals. So make sure you pick a good team and a good hospital. Now is the time to get tough. Stay with us so we can help. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#21948 01-14-2007 12:47 PM
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Thank you so much-I cried just knowing you were there and talking to me-just sitting here crying.
I do not know anything yet. Everyone is meeting tomorrow to discuss my case and get back to me. They say there is a good ent at Roanoke Memorial Hospital or I can go to the University of Va about 2 hours away. That is a long way for my family-but when they told me I went into another world. Couldn't ask anything! I hope, well I know I will know better when I hear from them this week. I just want to know something. Looking on this internet is scary indeed.
Bless you dear sweet people!


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
#21949 01-14-2007 02:37 PM
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UVa is an NCI-designated cancer center and has a head and neck cancer program , which will take the team approach that is crucial in treating this disease. VCU in Richmond also has a similar program .

If you're anywhere near Norfolk, get in touch with minniea, who posts here and was treated at a head and neck cancer program at Eastern Virginia Medical School.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#21950 01-14-2007 05:02 PM
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Hi, Peace: Please go to UVA for an opinion. Having a good ENT is not enough[in our experience]. While he may be very good at what he does, you will need a whole team of experts watching over you during your tx. and recovery. If Roanoke can't provide them, then go to UVA. 2 hours travel time is nothing compared to the support you can get from a Head and Neck cancer program. Keep us informed on what is happening with you. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#21951 01-14-2007 11:09 PM
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I second what Amy said. I traveled 2 hours+ every day to be treated at a CCC. You can't make mistakes with this disease and second chances are few. You need a coordinated medical team. It's ok to be scared sh*tless - there are meds for that.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#21952 01-15-2007 04:55 AM
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Peace, I'm sorry you had to be here too.
Like Stoj said, anything you need to express, this is the place to do it.
As I was the caregiver, I would suggest that you and your husband go shopping for a nice notebook with some pockets in it.
Take it with you when you go for your consultations and all future appointments. Ask your husband to take notes while you are at each visit. You can't do it, the medical personal will be looking at you, and you will be busy absorbing
as much as you can while looking at them. Neither of you will absorb everything, but between the two of you and the notes for memory jogging, you will be fine.
Date each visit and write down the names of each medical personel that speaks to you.
In between appointments, write down all the questions that pop into your head. Ask hubby to review the questions and see that they are answered at the next visit.
Doing this will help you both to have some sense of control over the what looks to be a frightening out of control situation.

And, your right, the Internet is very scary. There is a lot of bad information and you don't know what you can trust.
WELL, FEAR NO MORE! YOU FOUND THE BEST SITE! You will find links to accurate medical information as well as the personal support provided in this forum.
In fact, here is a recent endorsement.
11/08/06 posting by founder Brian Hill announcing:

OCF has been chosen as the CDC's partner for prevention of oral cancer. http://www.cdc.gov/cancer/partners/fp_oral.htm

Knowledge is power!
Hoping you will keep us updated,
Ginny, CG to husband Mike


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
#21953 01-15-2007 09:42 AM
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Peace
This a scary time for you, and my heart goes out to you. It not going to be easy. I got myself all worked up before I went in as well, we all do, you will hear all kinds of stuff that will scare you, we all react different. Ask any Question you want to your doctor, and if you feel uncomfortable with it get another opinion, I felt good about my team, when I went into it.
I hope this helps alittle, I hope you the best.


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
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