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#183896 08-01-2014 07:21 AM
Joined: Jul 2014
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Talim75 Offline OP
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Hello, I am very glad to have found such a wonderful support group for oral cancer. This process is scary and being able to read about others' experiences has been helpful and reassuring for me.

Before I tell my personal story I need to give you some background on my experience with cancer. My father-in-law died of tongue cancer 10 years ago after a 2 year battle. His tumor was located on the back of his tongue and was quite progressed at the time of Dx. He had radiation, chemo, and surgery, but he unfortunately was not able to beat it. With the help of hospice we were able to care for him at home and we were all there for his final few weeks. Four years ago my husband had malignant skin cancer that was successfully removed and he has one more year to being cancer-free.

Earlier this spring I noticed an irritation on the right side of my tongue, and I thought I had bit it. As with anytime you bite your cheek, tongue, lip, etc I kept biting it and even woke up one night chewing on it (very odd for me) - so I figured it wasn't healing because I kept irritating it. I bought mouth guards to wear at night, but they didn't work. When it turned into an abnormal growth I went to see my doctor right away and he sent me to a specialist. It was biopsied and came back HPV P16+ SCC. Unlike most HPV oral cancers, mine is located on the side of the tongue rather than the back of it. I was sent to my surgeon who specializes in reconstruction. My CT scans showed that it hasn't spread to my lungs, but they will not know if it is in my lymph system until after my surgery. My surgery date is scheduled for August 20th, I will have a partial glossectomy and neck dissection where they will sample 3 lymph nodes. I am not sure how much of my tongue will need to be removed, so I don't know the extent of my reconstruction and recovery just yet. I will find out after my surgery if I will need radiation and/or chemo treatments. I have met with the radiation and chemo doctors and they have gone over my treatment options and side effects with me in case I will need to have it. I have also met with my speech therapist to begin planning for my recovery therapy.

I am usually quite healthy and can't even remember the last time I was sick. I don't do well with hospitals, needles, IVs, etc and feel quite anxious, queasy and uneasy. The first shot I remember as a child at age 4 the nurse stuck the needle all the way through my arm - I thought I had recovered from it but I now have anxiety issues. Do any of you have any suggestions for relaxation techniques or overcoming a fear of needles?

From researching it myself it appears that HPV cancers respond better to treatment. This is kind of a double edged sword for me because I am very upset with the HPV diagnosis. I have always been very careful and my husband and I have only been with each other and we've been together for 16 years. To find out that I have a cancer caused by an STD, and one that you can transmit simply from kissing and that could be dormant for so long is very upsetting and disturbing for me. My mother had HPV dysplasia in the late 70s and I have seen studies that suggest it can be passed on to children from their mother through the bloodstream, breastfeeding, and close contact. I am worried for my husband and hope that he doesn't develop any HPV-related cancer in the future. He has been totally loving and supporting through this process and isn't very concerned. This is more of an issue for me, and I am very afraid for him now.

Overall, I am healthy and have early detection so I am expected to recover just fine. I am staying positive and keeping busy. I am also very appreciative of this support group where I am able to discuss my issues and fears.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF! you have found the very best online support group to help get you and your family thru your cancer diagnosis. We will help you with info and support.

Most adults will have HPV at one point or another in their lives. It is nothing to be ashamed of. For the majority of people who have HPV, their body will clear it without them ever knowing they even had it. HPV does not show symptoms like other diseases. At this time there is more unknown about HPV than is known, even about the transmission. Click on any of the word HPV in this paragraph and read more about it. We also have a newfeeds you can check out that carries the most up to date news articles about both HPV and everything oral cancer.

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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"OCF Canuck"
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Hi there are you certain it's HPV related. I'm sure your dr. Told you it is a highly unusual location for an HPV related cancer. Where are you being treated? I had a similar surgery and treatment, and finished 38 mos ago. It's a doable thing just not fun at all.


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: Jul 2014
Posts: 42
Talim75 Offline OP
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Thank you for your responses.

ChristineB - I agree that there seems to be more unknown for HPV than known right now. And a lot of the information doesn't necessarily make sense to me and seems a bit contradictory. I am less ashamed than shocked and scared right now.

Cheryld - Yes, the doctor's have confirmed that it is HPV + and he even took another look at my biopsy because the cancer is in such an unusual location. I am being treated at the Medical University of South Carolina. My doctor's there have been wonderful and I feel that I am in good hands.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Sorry you had to join, and other unfortunate family history, but welcome.

Just to add a few things mentioned, it is not common for HPV involment in the oral cavity or tongue, but may occurr. Sometimes it's a missed primary in the oropharynx or is too small for any scanning. They may do a pendosvopy, with biopsies, before surgery while under sedation to see if there is further involving.

There have been a few studies, published reports, that show long term partners are not at an increaee risk for HPV.

http://oralcancernews.org/wp/oral-h...oropharyngeal-cancer-and-their-partners/

Unfortionatly, studies also show there is no prognostic benefit being HPV positive outside the oropharynx. Hopefully, in the future this proves wrong.

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/

As mentioned, there are links here covering HPV related head and neck cancer.

As far as relaxing, some meditate, use visualization, listen to music.


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






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"OCF Canuck"
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Well the surgery is not fun, but it's better than rads and chemo. My surgery was 14 hours they removed 40 lymphnodes one was positive. Recovery from surgery was quick, not so much on the rads and I faired really well through it. It's just that it does long lasting damage. It took me a year to feel normal. HPV does respond very well to rads but as you said it is a virus and can lay dormant. That's the fear. However this treatment is doable with preparation, planning for the worst and hoping for the best, and determination. You will get through it, hugs.


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: Sep 2006
Posts: 8,311
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I don't remember anyone on this site with a presentation like yours. You mention a CCC, which one?


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.
Joined: May 2014
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Talim75,

I had the same operation you are going in for May 28th. I had 1/3 of the right side of my tongue removed and reconstructed. Mine tarted very similar to yours and I thought the same that it would go way and waited 4 months before I saw a doctor. I am in week number 5 of radiation and all is well. They took some nodes but I was totally clear but it was deep so as a precaution they suggested radiation. I was in the hospital in San Antonio for 10 days and had the trac and feeding tube but got rid of them when I went home.

Overall it hasn't been unbearable just more irritating. Lost my taste last week which really su--- but they say it comes back. I never had any problem swallowing or eating so I was better then a lot. Haven't lost any weight just some energy although I am still playing golf. They have a new mouthwash that is fantastic and keeps any pain away. I have pain pills but haven't had to use them.

As with. You my health was good although I had a 5 bypass 13 years ago with no problems since. Never even catch a cold. Smoked for 40 years but had quit outside the emergency room 13 years ago. Just keep a positive outlook and you should do fine. Don't fret the hospital as the nurses are dedicated and will help you through it (am prejudice as I am married to a critical care nurse). Please free free to contact me with any questions.

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"Unfortunately, studies also show there is no prognostic benefit being HPV positive outside the oropharynx. Hopefully, in the future this proves wrong."

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/

As mentioned, HPV positivity has no benefit outside the oropharynx, and hopefully that changes. Now a new study says HPV positive oral cancer patients fare better than non HPV positive oral cancer patients, but only if they are p16 positive and HPV positive, so that's good news!


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






Joined: Jul 2014
Posts: 42
Talim75 Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 42
I may have misunderstood the use of the abbreviation, but that was when my surgeon presented my case to the tumor board at my hospital and when they ultimately all discussed and agreed on their recommendations for me.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Jul 2014
Posts: 42
Talim75 Offline OP
Contributing Member (25+ posts)
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Joined: Jul 2014
Posts: 42
Thank you for all of your replies. It is very nice to have support right now and to hear about everyone's experiences. I have my pre-surgery meeting with my surgeon next Monday and will learn a lot more then. Thanks again!!


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Posts: 1,291
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Welcome to OCF. You are in good hands here for real world experiences and tips. You are young and live a healthy lifestyle. This helps a lot through treatment and recovery.

Keep reading here and building a list of questions and maximize your understanding of what you face. The more informed the better you can understand what is happening and how to speed your journey and minimize the bumps and there will be a few for certain.

It is tough but you will make it through. 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
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