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#171906 10-01-2013 08:57 PM
Joined: Sep 2013
Posts: 4
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Joined: Sep 2013
Posts: 4
Hello all,

I have been a silent lurker on these boards for a bit over a month. Your questions and sharing of your experiences have aided me greatly as I found myself diagnosed with head and neck cancer. One of the most helpful and soothing functions of these boards has been the ability to search through threads, identify people with a diagnosis similar to mine and learn about their experiences. Therefore, with the object of �paying it forward� to future survivors, I will tell my story.

At time of diagnosis, I was a 37-year old white male, non-smoker (never a cigarette in my life!), social alcohol user (wine with dinner kind of guy) in decent shape. I am married with two small children (3 � year old and a newborn who was under 3 weeks at time of my diagnosis).

I developed a lesion on my tongue in the fall of 2011. At the advice of a dentist, I went to see an oral surgeon in spring of 2012, The first oral surgeon was unconcerned � given the appearance of the lesion and my lack of risk factors, he did not suspect cancer was probable (and the lesion may not have been cancerous at the time). I received a mouthwash with instructions to call him back if it didn�t go away in a few weeks. As weeks turned into months and then years, I consistently put off getting the lesion re-checked as I was �too busy� with work, life, etc. Finally, in August of 2013, as it was getting larger and interfering with my ability to drink white wine and eat spaghetti sauce, I went to another oral surgeon who took a biopsy (I could tell by his body language he had a strong suspicion something was up). I received the call on 8/29/13 that I had a superficially invasive squamous cell carcinoma of the left lateral oral tongue.

The next couple of weeks were spent seeing a couple of different doctors to develop a treatment plan. My primary ENT preliminarily diagnosed me as T1N1Mx based upon a suspicious lymph node and wanted to do a partial glossectomy and selective neck dissection to remove the lymph nodes on the left side of my neck. He did not order any scans, as he did not think anything we found on the scans would change our treatment approach.

I went to Wake Forest Baptist Medical Center's Comprehensive Cancer Center for a second opinion. They wanted to run scans. The CT scan showed the one large left side node and a suspicious looking node on the right side. I went back for a follow-up PET Scan. To my great relief, the PET Scan came back negative (even for the suspicious left side node).

Confirming that the approach my original ENT suggested was the same Wake would recommend (and finding out my original ENT had an excellent surgical reputation), I went in on 9/23/13 for the surgery. I had the surgery on Monday afternoon and was released from the hospital on Thursday afternoon. To be honest, I felt at the time of release that it may have been a bit premature, but my doctor felt the earlier I could get home, the quicker I would recover (and again, he was right).

The surgery was not easy (I am still recovering from it). Important milestones I can remember were last shot of morphine (early Wednesday morning � switching to oral oxycodone), eating some applesauce, broth and pudding (Wednesday), eating pureed stew (Friday), eating first real food (chicken, Saturday night) and stopping the pain pills altogether (last one was before bed Sunday night). It is amazing to me, however, that once I got the recovery ball rolling how quickly things began to get better. The human body has amazing recuperative systems when given the correct circumstances.

On Monday, 9/30/13, I received the best news of all. The pathology of the lymph nodes showed no evidence of cancer and my margins were clear except for 1 or 2 strands of dysplasia � no radiation or chemo for me! I was officially diagnosed as T1N0M0, Stage I.

My next few years are going to be spent with 3 month visits to the ENT, checking to make sure no sign of recurrence appears. My ENT will not be running any scans unless he finds something suspicious via inspection. I will be having a nice celebration at each statistically significant milestone.

I am lucky enough to be a generally optimistic person, and throughout the process have never had any real doubt that I would beat this. The frantic pace probably helped. I cannot say that there have not been a few times my mind slipped into �what if� land, but those were few and far between. I have an awesome wife as my primary caregiver and parents who stayed with us to help look after our young ones (which has been most of the stress for me during the process).

One thing I would like to mention for anyone new � there is an awesome website called Caring Bridge. I used it to update my whole family, all my friends and many work colleagues of my progress. It helped us from having to repeat each new development to each person. I also enjoyed sitting in the hospital reading the guestbook comments from all of my loved ones.

I probably will contribute to the boards infrequently � I am not a big �public sharer�. However, as the information and stories on here have been invaluable, I am deeply grateful that so many of you are. Good luck to everyone with their treatments and prognoses. From here on out, I hope to live by my motto of �Cancer � Get the F*CK out of my body!"

Nikgogol

Nikgogol #171907 10-01-2013 08:58 PM
Joined: Sep 2013
Posts: 4
Member
OP Offline
Member

Joined: Sep 2013
Posts: 4
Hello all,

I have been a silent lurker on these boards for a bit over a month. Your questions and sharing of your experiences have aided me greatly as I found myself diagnosed with head and neck cancer. One of the most helpful and soothing functions of these boards has been the ability to search through threads, identify people with a diagnosis similar to mine and learn about their experiences. Therefore, with the object of �paying it forward� to future survivors, I will tell my story.

At time of diagnosis, I was a 37-year old white male, non-smoker (never a cigarette in my life!), social alcohol user (wine with dinner kind of guy) in decent shape. I am married with two small children (3 � year old and a newborn who was under 3 weeks at time of my diagnosis).

I developed a lesion on my tongue in the fall of 2011. At the advice of a dentist, I went to see an oral surgeon in spring of 2012, The first oral surgeon was unconcerned � given the appearance of the lesion and my lack of risk factors, he did not suspect cancer was probable (and the lesion may not have been cancerous at the time). I received a mouthwash with instructions to call him back if it didn�t go away in a few weeks. As weeks turned into months and then years, I consistently put off getting the lesion re-checked as I was �too busy� with work, life, etc. Finally, in August of 2013, as it was getting larger and interfering with my ability to drink white wine and eat spaghetti sauce, I went to another oral surgeon who took a biopsy (I could tell by his body language he had a strong suspicion something was up). I received the call on 8/29/13 that I had a superficially invasive squamous cell carcinoma of the left lateral oral tongue.

The next couple of weeks were spent seeing a couple of different doctors to develop a treatment plan. My primary ENT preliminarily diagnosed me as T1N1Mx based upon a suspicious lymph node and wanted to do a partial glossectomy and selective neck dissection to remove the lymph nodes on the left side of my neck. He did not order any scans, as he did not think anything we found on the scans would change our treatment approach.

I went to Wake Forest Baptist Medical Center's Comprehensive Cancer Center for a second opinion. They wanted to run scans. The CT scan showed the one large left side node and a suspicious looking node on the right side. I went back for a follow-up PET Scan. To my great relief, the PET Scan came back negative (even for the suspicious left side node).

Confirming that the approach my original ENT suggested was the same Wake would recommend (and finding out my original ENT had an excellent surgical reputation), I went in on 9/23/13 for the surgery. I had the surgery on Monday afternoon and was released from the hospital on Thursday afternoon. To be honest, I felt at the time of release that it may have been a bit premature, but my doctor felt the earlier I could get home, the quicker I would recover (and again, he was right).

The surgery was not easy (I am still recovering from it). Important milestones I can remember were last shot of morphine (early Wednesday morning � switching to oral oxycodone), eating some applesauce, broth and pudding (Wednesday), eating pureed stew (Friday), eating first real food (chicken, Saturday night) and stopping the pain pills altogether (last one was before bed Sunday night). It is amazing to me, however, that once I got the recovery ball rolling how quickly things began to get better. The human body has amazing recuperative systems when given the correct circumstances.

On Monday, 9/30/13, I received the best news of all. The pathology of the lymph nodes showed no evidence of cancer and my margins were clear except for 1 or 2 strands of dysplasia � no radiation or chemo for me! I was officially diagnosed as T1N0M0, Stage I.

My next few years are going to be spent with 3 month visits to the ENT, checking to make sure no sign of recurrence appears. My ENT will not be running any scans unless he finds something suspicious via inspection. I will be having a nice celebration at each statistically significant milestone.

I am lucky enough to be a generally optimistic person, and throughout the process have never had any real doubt that I would beat this. The frantic pace probably helped. I cannot say that there have not been a few times my mind slipped into �what if� land, but those were few and far between. I have an awesome wife as my primary caregiver and parents who stayed with us to help look after our young ones (which has been most of the stress for me during the process).

One thing I would like to mention for anyone new � there is an awesome website called Caring Bridge. I used it to update my whole family, all my friends and many work colleagues of my progress. It helped us from having to repeat each new development to each person. I also enjoyed sitting in the hospital reading the guestbook comments from all of my loved ones.

I probably will contribute to the boards infrequently � I am not a big �public sharer�. However, as the information and stories on here have been invaluable, I am deeply grateful that so many of you are. Good luck to everyone with their treatments and prognoses. From here on out, I hope to live by my motto of �Cancer � Get the F*CK out of my body!"

Nikgogol

Nikgogol #171908 10-01-2013 08:58 PM
Joined: Sep 2013
Posts: 20
Member
Offline
Member

Joined: Sep 2013
Posts: 20
I posted like this my first time. You can't copy and paste or it'll show a blank post. frown


CG to husband-
1/2013 lymphoplasmacytic lymphoma found
5/2013 1st round chemo stopped due to hole in hard palate.
6/2013 SCC found in maxillary sinus/hard palate.
7/2013 Removed tumor from palate + neck dissection T3NO.
Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
Nikgogol #171909 10-01-2013 09:00 PM
Joined: Sep 2013
Posts: 4
Member
OP Offline
Member

Joined: Sep 2013
Posts: 4
I seem to be having trouble having my posts actually who up --

Hello all,



I have been a silent lurker on these boards for a bit over a month. Your questions and sharing of your experiences have aided me greatly as I found myself diagnosed with head and neck cancer. One of the most helpful and soothing functions of these boards has been the ability to search through threads, identify people with a diagnosis similar to mine and learn about their experiences. Therefore, with the object of �paying it forward� to future survivors, I will tell my story.

At time of diagnosis, I was a 37-year old white male, non-smoker (never a cigarette in my life!), social alcohol user (wine with dinner kind of guy) in decent shape. I am married with two small children (3 � year old and a newborn who was under 3 weeks at time of my diagnosis).

I developed a lesion on my tongue in the fall of 2011. At the advice of a dentist, I went to see an oral surgeon in spring of 2012, The first oral surgeon was unconcerned � given the appearance of the lesion and my lack of risk factors, he did not suspect cancer was probable (and the lesion may not have been cancerous at the time). I received a mouthwash with instructions to call him back if it didn�t go away in a few weeks. As weeks turned into months and then years, I consistently put off getting the lesion re-checked as I was �too busy� with work, life, etc. Finally, in August of 2013, as it was getting larger and interfering with my ability to drink white wine and eat spaghetti sauce, I went to another oral surgeon who took a biopsy (I could tell by his body language he had a strong suspicion something was up). I received the call on 8/29/13 that I had a superficially invasive squamous cell carcinoma of the left lateral oral tongue.

The next couple of weeks were spent seeing a couple of different doctors to develop a treatment plan. My primary ENT preliminarily diagnosed me as T1N1Mx based upon a suspicious lymph node and wanted to do a partial glossectomy and selective neck dissection to remove the lymph nodes on the left side of my neck. He did not order any scans, as he did not think anything we found on the scans would change our treatment approach.

I went to Wake Forest Baptist Medical Center's Comprehensive Cancer Center for a second opinion. They wanted to run scans. The CT scan showed the one large left side node and a suspicious looking node on the right side. I went back for a follow-up PET Scan. To my great relief, the PET Scan came back negative (even for the suspicious left side node).

Confirming that the approach my original ENT suggested was the same Wake would recommend (and finding out my original ENT had an excellent surgical reputation), I went in on 9/23/13 for the surgery. I had the surgery on Monday afternoon and was released from the hospital on Thursday afternoon. To be honest, I felt at the time of release that it may have been a bit premature, but my doctor felt the earlier I could get home, the quicker I would recover (and again, he was right).

The surgery was not easy (I am still recovering from it). Important milestones I can remember were last shot of morphine (early Wednesday morning � switching to oral oxycodone), eating some applesauce, broth and pudding (Wednesday), eating pureed stew (Friday), eating first real food (chicken, Saturday night) and stopping the pain pills altogether (last one was before bed Sunday night). It is amazing to me, however, that once I got the recovery ball rolling how quickly things began to get better. The human body has amazing recuperative systems when given the correct circumstances.

On Monday, 9/30/13, I received the best news of all. The pathology of the lymph nodes showed no evidence of cancer and my margins were clear except for 1 or 2 strands of dysplasia � no radiation or chemo for me! I was officially diagnosed as T1N0M0, Stage I.

My next few years are going to be spent with 3 month visits to the ENT, checking to make sure no sign of recurrence appears. My ENT will not be running any scans unless he finds something suspicious via inspection. I will be having a nice celebration at each statistically significant milestone.

I am lucky enough to be a generally optimistic person, and throughout the process have never had any real doubt that I would beat this. The frantic pace probably helped. I cannot say that there have not been a few times my mind slipped into �what if� land, but those were few and far between. I have an awesome wife as my primary caregiver and parents who stayed with us to help look after our young ones (which has been most of the stress for me during the process).

One thing I would like to mention for anyone new � there is an awesome website called Caring Bridge. I used it to update my whole family, all my friends and many work colleagues of my progress. It helped us from having to repeat each new development to each person. I also enjoyed sitting in the hospital reading the guestbook comments from all of my loved ones.

I probably will contribute to the boards infrequently � I am not a big �public sharer�. However, as the information and stories on here have been invaluable, I am deeply grateful that so many of you are. Good luck to everyone with their treatments and prognoses. From here on out, I hope to live by my motto of �Cancer � Get the F*CK out of my body!"

Nikgogol

Nikgogol #171918 10-01-2013 10:16 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Please type your post so it will show up. Sorry for any inconvenience.


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
Nikgogol #171921 10-01-2013 11:47 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
under your copy entry block there is a drop down that says using UBBCode in it. Turn that done to HTML and UBB and this general solves the problem that you are having.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Nikgogol #172223 10-08-2013 02:37 AM
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Nik:
You never told us your story. I hope you didn't get frustrated with trying to post on the forum and give up.

Please come back and try one more time. You have a story worth telling. People here are eager to listen... and help.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #172309 10-09-2013 11:54 AM
Joined: Sep 2013
Posts: 4
Member
OP Offline
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Joined: Sep 2013
Posts: 4
Hello All,

I have been a silent lurker on these boards for a bit over a month. Your questions and sharing of your experiences have aided me greatly as I found myself diagnosed with oral cancer. One of the most helpful and soothing functions of these boards has been the ability to search through threads, identify people with a diagnosis similar to mine and learn about their experiences. Therefore, with the object of "paying it forward" to future survivors, I will tell my story.

At time of diagnosis, I was a 37-year old white male, non-smoker (never a cigarette in my life!), social alcohol user (wine with dinner kind of guy) in decent shape. I am married with two small children (3 1/2 year old and under 3 weeks at time of diagnosis).

I developed a lesion on my tongue in the fall of 2011. At the advice of a dentist, I went to see an oral surgeon in the spring of 2012. The first oral surgeon was unconcerned - given the appearance of the lesion and my lack of risk factors, he did not suspect cancer was probable (and the lesion may not have been cancerous at the time). I received a mouthwash with instructions to call him back if it didn't go away in a few weeks. As weeks turned into months and then years, I consistently put off getting the lesion re-checked as I was "too busy" with work, life, etc. Finally, in August of 2012, as the lesion was getting larger and interfering with my ability to drink white wine and eat spaghetti sauce or spicy foods, I went to see another oral surgeon who took a biopsy (I could tell by his body language that he had a strong suspicion something was up). I received the call on 8/29/13 that I had a superficially invasive squamous cell carcinoma of the left lateral oral tongue.

The next couple of weeks were spent seeing a couple of different doctors to develop a treatment plan. My primary ENT preliminarily diagnosed me as T1N1Mx based upon a suspicious lymph node and wanted to do a partial glossectomy and a selective neck dissection to remove the lymph nodes on the left side of my neck. The cancer is positive for HPV-16. He did not order any scans, as he did not think anything we found on the scans would change our treatment approach.

I went to Wake Forest Baptist Medical Center's Comprehensive Cancer Center for a second opinion. They wanted to run scans. The CT scan showed the one large left side node and a suspicious looking node on the right side. I went back for a follow-up PET scan. To my great relief, the PET scan came back negative (even for the suspicious left side node).

Confirming that the approach my original ENT suggested was the same as Wake would recommend (and finding out that my original ENT had an excellent surgical reputation), I went in on 9/23/13 for the surgery. I had the surgery on Monday afternoon and was released from the hospital on Thursday afternoon. To be honest, I felt at the time of release that it may have been a bit premature, but my doctor felt the earlier I could get home, the quicker I would recover (and again, he was right).

The surgery was not easy (I am still recovering from it). Important milestones I can remember were last shot of morphine (early Wednesday morning - switching to oral oxycodone), eating some applesauce, broth and pudding (Wednesday), eating pureed stew (Friday), eating first real food (chicken, Saturday night) and stopping the pain pills altogether (last one was before bed Sunday night). As of the time of this writing, I plan on returning to work next week. I am not 100%, but I am getting fairly close. It is amazing to me that once I got the recovery ball rolling how quickly things began to get better. The human body has amazing recuperative systems when given the correct circumstances.

On Monday, 9/30/13, I received the best news of all. The pathology of the lymph nodes showed no evidence of cancer and my margins were clear except for 1 or 2 strands of dysplasia - no radiation or chemo for me! I was officially diagnosed as T1N0M0, Stage 1.

My next few years are going to be spend with 3 month visits to the ENT, checking to make sure no signs of recurrence appears. My ENT will not be running any scans unless he finds something suspicious via inspection. I will be having a nice celebration at each statistically significant milestone.

I am lucky enough to be a generally optimistic person and throughout the process have never had any real doubt that I would beat this. The frantic pace probably helped. I cannot say that there were not a few times my mind slipped into "what if" land, but those were few and far between. I have an awesome wife as my primary caregiver and parents who stayed with us to help look after our young ones (which has been most of the stress for me during the process).

One thing I would like to mention for anyone new - there is an awesome website called Caring Bridge. I used it to update my whole family, all of my friends and many work colleagues of my progress. It helped us from having to repeat each new development to each person. I also enjoyed sitting in the hospital reading the guestbook comments from all of my loved ones.

I probably will contribute to the boards infrequently - I am not a big "public sharer". However, as the information and the stories on here have been invaluable, I am deeply grateful that so many of you are. Good luck to everyone with their treatments and prognoses.

Nikgogol

Nikgogol #172311 10-09-2013 02:31 PM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Hi Nikgogol, welcome to the group and thanks for sharing your story! Your generally optimistic outlook and your being in relatively good physical shape will help you through this, perhaps more than you even realize at this time.

Most people take it for granted that they are in relatively good shape - until, that is, the esteemed Mr. Murphy shows up to the party and hands them an unpleasant surprise.

Those nasties that come with a significant physical component then proceed to show them how far from reality that general assumption was, and the lamentation begins.

It's never too late to up your game and get in better shape. Every trauma is dealt with with considerably reduced pain and suffering for someone who is actually in good shape, so my advice, repeated ad nauseaum here, is to start right now and get in GOOD shape; and more importantly, make it a priority to stay that way!

It truly helps.

Good luck, mate!


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!
Nikgogol #172337 10-10-2013 05:20 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Good story and we hope all your future visits to your docs are a waste of time!


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.
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