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#182377 06-11-2014 10:02 PM
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Hi Everyone,

I have been lurking on here for quite some time. Here is my story:

History: Health 37 year old fit married monogamous male. Exercises regularly, do not smoke / use any form of tobbaco, do not drink more than the occasional social drink, no history of cancer in my family.

-December 31, 2013, notice a sore on side of my tongue that burned when I ate spicy food.
- Sore persisted and did not go away. By mid February 2013, while sleeping and snoring my mouth would dry out. I would wake up with severe pain on side of my tongue where the sore was. I knew something was not right.
- Received Dentist appointment for March 3, 2013. Dentist inspects my mouth, I have no cavities, tells me my mouth looks good and tells me my sore is nothing. I do not buy it and tell them I would like to see oral surgeon today and I want it biopsied. I wait 3 hours, finally see oral surgeon. Oral surgeon, biopsy's area, taking fairly large piece, giving me 3 stitches. Sends me home with steroids.
- Friday morning, March 7, 2013 oral surgeon calls me and tells me that the lesion is carcinoma in situ. He tells me he made me an appt for Monday at 9:30 at some not very well known ent oncologist. I am scared to death at this point.
- I call my wife. Through some friends, I was recommended to go see Dr. Urken at Beth Israel. I got an appointment for Wednesday March 13. I had all samples forwarded to him in advance. He confirms the carcinoma in situ diagnosis with his lab after they review. He tells me, lets do some testing to make sure it is localized and then lets take it out. We schedule surgery for April 1, 2013.
-March 14, I get a complete physical workup and CT of the head and neck with contrast. Cancer appears to be local but, one of my lymp nodes was slightly not symmetrical with the other side of my neck. Oncologist reccomends biopsy of the lymp node. March 28, I get the lymp node biopsied by fine needle aspiration with sonogram. Came back negative.
-Monday April 1, 2013 went in for surgery. Dr. Urken tells me right before surgery that once he is operating, he will look at the sample taken out of my mouth and if it is a certain depth, he is going to do a neck dissection to remove my nodes. I wake up 4 hours later, first thing I do is feel my neck, no cuts! It was confined to surface. I had 10 stitches in my mouth and could not eat solids for about a week and a half. No chemo or rads. The hospital released me that same day.
-There were follow ups with the doctor the next week, then again at the end of the month. All looked good.
-June 2013 - followup and oral exam. All looks good.
- August 2013, Head and Neck MRI with contrast. NED. I really did not like the confinement of the machine.
-Follup's oral exam in Novemeber 2013, all good.
-Follow up and PET/CT late January 2014. This time, a little twist. Doctor see another spot in my mouth and tells me he wants to see me again in about a month to monitor it. Now I am kind of nervous. In addition my PET/CT found 2 non specific lung nodules up to 3mm. Now I am nervous.
- I go back in March 2014. Spot on mouth cleared up and he tells it looks good. I spoke with him about the lung nodes and he said he is not concerned about them at all and would not worry. Radiologist recommends rechecking in 6-12 months if no prior CT exists. Urken says lets just get them on the record and over with and do the scan in June. So, i walk out of appointment feeling good. He seemed confident that the nodules are nothing.
-Fast forward to late May 2014, as my test and appointment was pending, I begin to become real anxious about the nodules. I start reading on internet (bad idea) about multiple nodules being a sign of metastasis, etc. I really became very anxious. This forum is one of the places, where I found a lot of reason and comfort regarding the whole situation. Anyway, forward to last week I had CT of chest complete. Nodules still there but there are no new ones and there is no sign of change in them. Doctor thinks they are definitely from prior infection and once again tells me that they are nothing to be concerned over and are just there from prior infection. Radiologist recommends following them according to "clinical protocol because of prior tongue malignancy". Anyways, I feel a whole lot better now that no new lung nodules popped up and they seem to be exactly the same almost 6 months later.

I also feel fortunate that my oral malignancy was confined to the surface and removed but the entire experience has wreaked havoc on my nerves. My advice to anyone is, check your mouth thoroughly and if you notice something that does not go away, insist for a biopsy.

Other thing is, I do not believe my sample was ever tested for HPV, which seems kind of weird. At one point in the beginning I brought it up and never did really get an answer if this is what the cancer could be related to. However, after reading about it, I think it is a strong possibility that it was HPV related.

Anyways, I think this forum is a great resource and I wanted to share my experience. Maybe someday it could help someone else.

Steve


SCC In situ March 2013, CT & xrays March 2013, removed April 1, 2013, MRI August 2013 NED, Pet/CT January 2014 NED, CT of Chest June 2014 NED (Knock on wood)!
stardalo #182381 06-12-2014 12:20 AM
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Welcome to OCF! Thanks for taking the time to write your story. You have been thru alot but lucky your cancer was found very early.

You questioned about being HPV+. Usually the location of HPV+ OC is base of tongue or tonsils, not on the side of the tongue like where yours was located. Treatment is the same regardless of what caused your cancer. There are many here who have no known cause.



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
stardalo #182383 06-12-2014 04:35 AM
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Great story, Steve! Thanks for sharing your experience. I'm sure many will benefit from hearing it. Welcome!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
stardalo #182386 06-12-2014 05:44 AM
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I went to 5 cancer docs before I was treated and if I had stopped at number 3 I would be dead today. Actually it was my wife's persistance that I continued to see doctor after doctor but the moral of your story is right on.

It's very very very doubtful as Christine said, that the location of your cancer was caused by the virus.

Congrats and lets hope you are NED forever.


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.
stardalo #182387 06-12-2014 05:44 AM
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Welcome Steve! You're in good hands with Dr. Urken, who is one of the top ENT's in the country. I was also treated at Beth Israel, and was just there on Tuesday to see the oral surgeon. Doesn't sound like HPV-16 for the above reasons, which usually doesn't present itself as an ulcer.

Thanks for sharing.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






stardalo #182392 06-12-2014 08:01 AM
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Hey welcome... great story. I had a similar cancer and I had the works! surgery, ND, rads and chemo. Your dr. sounds great and did his due diligence. It is HIGHLY unusual for a lung nodule to pop up with no nodes involved and be metastatic. Chances are it's as your dr. says. Environmental. Thankfully. ;o) Hugs and many blessings to you.


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
stardalo #182394 06-12-2014 09:20 AM
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Welcome Steve,

Excellent intro, and thanks for being so thoughtful to append signature giving your history.

Like the others before me, I am delighted to read that a) you're in such good hands, and b) that the nodes in your lung were not cancer! I agree also that HPV was not involved.

I wish you continued good fortune with a complete recovery and no recurrences!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
stardalo #182448 06-14-2014 03:58 PM
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Steve,
Thanks for the great post. It is concise yet through and hits all the key points. Especially the first one - asking for the oral surgeon to take a look and grab that biopsy. Even though many more dentists are cancer aware, far too many gloss over cases just like yours. Wonderful outcome as well.

btw - I had worrisome nodules showing on my lungs too. A scan at 8 month from diagnosis showed they were gone and my one year post tx scan shows nothing so final sigh of relief on that chapter.

Good luck, Don


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
stardalo #183133 07-05-2014 04:49 PM
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Hi Steve,

I also had a small pulmonary nodule on an Xray before. I had to wait 6 months to get it confirmed. It went away. I had another follow up Xray and it is no longer there.

I've heard of other people who have had several nodules located all over, and after years of monitoring, they were ruled as being persistent lymphapathy probably due to some viral nature. Nothing to be alarmed about. Just get those xrayed every 6 months.

stardalo #183137 07-06-2014 01:23 AM
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Posts: 286
"OCF Down Under"
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Thanks for sharing your story Steve. Stories like yours often contain key words that bring people here. I think I googled metastasis among other words and was lucky enough to find this place through a story like yours.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.

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