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#191384 12-14-2015 09:44 PM
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I really don't know where to start... This is my 2nd cancer.. I was diagnosed last year w/ thyroid cancer & now this.. Ors cancer.. I'm so confused & scared. I was told that usually smoker's & drinker's get this type of cancer but I have it & I don't do neither... I'm scared of the neck dissection & radiation that I have to endure.. I don't know what to do...[color:#FF6666][/color][b][/b][i][/i]


Godsgiftiam
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Hi and welcome. I know exactly what you mean because I've had two types of cancer too and wasn't a smoker, didn't drink much. There are quite a few other pathways to this disease but it's natural to feel cheated by fate when you don't have the main risk factors.

You will get a lot of support here. I'd say most of us have had neck dissections and radiation. One of my doctors said, "It's very tough treatment but we get people through it." I found that to be true. They did get me through it. On top of that I had this OCF site to help me. Just writing things down helps and when there's an understanding audience it's even better.

Two cancers in two years is a real blow. Your body and mind is going through so much. All I can reassure you with is that neck dissections and radiation are doable and they are effective.

Other people will be along soon with words of comfort and advice.

Best wishes


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Welcome to OCF. Im sorry you have the need for our group. I know how awful it is when first diagnosed. The unknown future that diagnosis casts is very scary.

First I would suggest you read and educate yourself about oral cancer. If you have not already gone for a second opinion that would be a great place to start. Surgeons always will say surgery and radiation oncologists will tell you rads is the way to go. When being examined by a comprehensive cancer center (CCC), you will be treated with a team based approach so everyone is on the same page.

Ive sent you a private message (PM). Look next to the My Stuff tab and click on the tiny flashing envelope. The link Im sending you will help you to add a signature and help you quickly learn how to navigate the forum.

Now that you are a member of our group, you are not alone with this. We will help you get thru it. Best wishes with everything!



Christine
SCC 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 smile
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Hi. Sorry to hear about your diagnosis. I wanted to chime in and let you know that although I did not have radiation, I did have a neck dissection. Truly, it was no where near as bad as I had imagined it would be. I was puffy but it went down pretty quickly and now, you can't even notice the scar unless I show it to you!
Try not to worry about the surgery part of it, it was totally doable as Alpaca said!
Will be thinking of you.
Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
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Hi and welcome to our family. I can only imagine what you're going through - 2 cancers, hard to imagine. But I second what the others have said. Having had both the surgery and radiation I can assure you that it's doable. My radiation oncologist said exactly what Alpaca's did, and they were both right. You'll definitely get through it!

We're here to help, you're one of us now. Ask any questions and feel free to unburden yourself. You're among friends.

Courage!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Hi G,

I was exactly where you are one year ago today. I was facing oral surgery, free flap graft and neck dissection. I did not fit into any of the groups either (no drinking, chewing, smoking or HPV), but I had bitten myself while eating and that is where the cancer developed over 3-4 years. It just never healed right and became SCC.

I read everything I could about my situation and what to expect. I also read about the things others had gone through (you will find your best resources here on this site) and it helped temper my own anxiety. Things could be worse. I thought I was going to get through with just surgery and no radiation or chemo, but my cancer was a bit more advanced than they thought (you can only really tell once they get in there and do frozen slides under a microscope), so I was staged at 3, no nodes or metastases and scheduled for radiation and chemo light (3-5 sessions). Needless to say, I wasn't thrilled at the prospect after having read and researched everything. I knew I probably needed a GI tube, so accepted when they suggested it. Placement of that was far more painful than any other part of the surgery, and it was a general pain in the butt dealing with it, but I am glad I got it and knew I would probably not have survived so well had I not gotten it.

Not sure how far along you are, but once you get all your scans done, get a second opinion - I didn't want to do that, but it confirmed everything my (fabulous) docs had planned for me.

If you are confused and scared - ask questions of anyone here. You will find kindness and answers, plenty who have been there and back and lived to tell the tale. Most of us are happy to share our experiences and hopefully provide helpful info.

I had thyroid issues (hereditary) prior to my diagnosis and after 8 weeks of radiation I am in watch and wait mode for however long it takes for changes to show up. Its part of the process. I know therefore I am prepared. Hopefully.

This will sound strange, but I have found many things to laugh at and be very thankful for though out this process. There have been hiccups for sure, but in many respects this experience hit my 're-set button' and enabled me to see my life and the world from a new perspective.

PS - after less than a year (surgery was in Feb) I can honestly say I feel better and am healthier than I was going into it. It has been a LONG process, and I still have some limitations (taste, truismus, nerve issues, can't yawn). Rads are tough but you will get better, and its better if you keep your nutrition up before, during and after (great resources here).

Thoughts and prayers your way smile

H


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Alpaca #191421 12-19-2015 12:22 AM
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Thank you so much for your kind words of encouragement... I'm just so scared & worried.. But I'm glad I found this site & I'm glad to have met you...


Godsgiftiam
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Thank you I appreciate all of your help.. I know I'll get the hang of using this wonderful support group!!!


Godsgiftiam
Neicy #191423 12-19-2015 12:26 AM
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Thank you for your kind words I'm just so nervous & just feeling a little anxious about all this...

Last edited by Godsgiftiam; 12-19-2015 12:27 AM.

Godsgiftiam
David2 #191424 12-19-2015 12:30 AM
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Thank you David I'm just so grateful to have found uguys I Now know that there is strength in numbers & I'm not alone & I have friends here to give me support...


Godsgiftiam
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