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Joined: Jun 2014
Posts: 17
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Joined: Jun 2014
Posts: 17
Hi, I'm Cathy and was on here about 7 or so months ago and right before I finished my IMRT I dropped away from the site. I got scared because I kept reading about recurrence and I was just adjusting to being diagnosed and trying to be Mrs. Tough Mom, Wife, Child, Sister, Friend and I wiggled out.
instead of running I should have talked about it, no excuses, but still learning how to be a cancer fighter and survivor.
I'm scared just about every day that this will return and I think my brain got radiated..lol...and all sorts of other strange thoughts.
Thank you for letting me reintroduce myself.
woodstockga now living in Marietta Ga 💜
finished 30 rads 7/24/2014


3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49
PET Clear
4/18/14 re excis part gloss; Marg clear; R END all clean
6/12/14 start RAD IMRT x30
smile CathyG
Joined: Jan 2013
Posts: 1,291
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Welcome back, Cathy. Many suffer from anxiety. This far since treatment is a bit worrisome. Please let you doctor know and you'll likely be referred for some psychology service to help you better manage the worry. no need to suffer. don't run, we are here to help.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Nov 2014
Posts: 66
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Joined: Nov 2014
Posts: 66
You're welcome back anytime. How are you doing? I just finished treatments.


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

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Posts: 644
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Hi Cathy. I always wonder if people look at my signature and go arrrrgggghhhh. I think I'm one of a relatively small percentage who get new primaries after the first oral cancer.

Apparently there can be submicroscopic changes to the tissues in the mouth after the first cancer but 80% of people get away without a new primary. I'm one of the 20% who get a new cancer in their mouth.

People who have one episode and are okay for the rest of their lives might not stick around here so this site might be skewed towards people with recurrences or long-term after effects!

And, well, I've had two recurrences and four cancer diagnoses over all and I'm still going strong, albeit a bit battered and bruised. When I went back to work after my big tongue surgery I stopped accessing OCF, in fact I thought it would be healthier for me if I stopped focussing on cancer issues. Now I both need this site and really want to help others who might need some empathy!!!!


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.
Joined: Jun 2014
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Posts: 17
Thank you so much for the support and understanding. I'm finally getting to a ppint in my healing to understand I really just need to to live my life as best and as loving as I can and just be aware of my body and what is happening just as I was doing when the cancer was found. I was so extremely lucky that it was found as early as it was and that I'm still able to eat, to talk, and tell my family and friends I love them.

When are you considered a survivor? Silly question from someone in the health field but coming up on a year from diagnosis in March to the year anniversary from surgery in April...
Thank you for listening!
Cathy 💜


3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49
PET Clear
4/18/14 re excis part gloss; Marg clear; R END all clean
6/12/14 start RAD IMRT x30
smile CathyG
Joined: Jun 2014
Posts: 17
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Joined: Jun 2014
Posts: 17
I'm doing really well. My only issues are the lack of saliva and taste buds. Be cause of that I'm having a hard time keeping up with calories and protein. And I'm so sick of liquid everything...LOL
How are you doing? When did you finish?

Cathy


3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49
PET Clear
4/18/14 re excis part gloss; Marg clear; R END all clean
6/12/14 start RAD IMRT x30
smile CathyG
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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[quote]When are you considered a survivor? Silly question from someone in the health field but coming up on a year from diagnosis in March to the year anniversary from surgery in April...[/quote]Funny you should ask. I had the same question. Look at the new thread I started on just that topic


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Okay I think if you get through treatment whatever it is... you are a survivor.

the rule of thumb is

18 months,
3 years,
5 years


usually they biggest chance of recurrence is in the first 18 months.

From the date of discovery or completion of treatment is up to you.

I personally I go by completion of treatment. So for example. This May 04 it will mark the day I finished rads 4 years ago. (hopeful - YAY)

Feb 4 marked 4 years post surgery.

hopefully this helps.



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: Nov 2014
Posts: 66
Supporting Member (50+ posts)
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Joined: Nov 2014
Posts: 66
We all are survivors as long as we are still trucking along doing what we can do helping each other hang in there.

I am going to mark my calendar by day of completion because I'd rather celebrate getting those treatments done than discovering the cause of it all.

It does really help to hear from people who have been through things.



HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Dec 2010
Posts: 99
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2010
Posts: 99
My husband has had the same problem. The ensure etc. drinks were too sweet for him but he does need a lot of fluid to be able to swallow his food. I found Nestles Boost VHC nutritional drink and he uses one twice a day, diluting the drink with 8oz of milk. VHC is 530 calories, add the milk and each meal is over 600 calories. This is the only way he has been able to maintain his weight and actually now he does not like to eat a meal without it. He likes the taste of it. It is not sweet tasting to him.

The only place I have been able to buy it is on line. I order at MDDirect.com as they offer free shipping as the boxes are heavy. Arrives in two to three days. They have several different nutritional drinks so be sure it is the Boost VHC at 530 calories. It also includes protein and is lactose intolerance. Hope this helps.


CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.

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