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Joined: Oct 2012
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Hi all,

I am a 39 year old relatively healthy male and was just diagnosed with SCC. I had a cluster of nodes removed last week and they were sent to pathology. Came back HPV positive and cancerous - SCC.

I have a 2 year old boy and my wife is due with our second boy in 2 weeks. There is no other option than cure.

My ENT is scheduling me at the local cancer center to be see by an oncologist and radiation therapist. I assume this will happen after aPET scan. We have good insurance, and my outlook is usually to be aggressive. Mistakes are costly, so I am looking for any advice. I want to see my boys grow up.

I'm new at this so forgive me for any faux pas!


Ray

SCC Right Pharangeal wall Stage IV HPV+
T1-2N2bMO
Dx 10/12/2012
Father for the second time to 2nd beautiful boy 11/2/12
Port Implanted 11/20/12 - no feeding tube
Tx - 11/26/12 35 IMRT Rads 5X/week Weekly Cisplatin
Last treatment 1/15/13
"Grind it out, I will be cured as I have too much to live for"
Joined: Aug 2012
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Glad you found us, sorry your here. Your story is just like mine. See my signature line. This is curable stay positive, learn as much as you can, and find a CCC. I am still new here but this site has been a life line to me.

Last edited by Hockeydad; 10-18-2012 07:14 PM.

Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Oct 2012
Posts: 17
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Posts: 17
Thanks Hockey Dad -

I played in college so I plan on seeing my boys on the ice as well!

This all happened so fast!

Be well,
Ray


Ray

SCC Right Pharangeal wall Stage IV HPV+
T1-2N2bMO
Dx 10/12/2012
Father for the second time to 2nd beautiful boy 11/2/12
Port Implanted 11/20/12 - no feeding tube
Tx - 11/26/12 35 IMRT Rads 5X/week Weekly Cisplatin
Last treatment 1/15/13
"Grind it out, I will be cured as I have too much to live for"
Joined: Sep 2006
Posts: 8,311
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Posts: 8,311
Ray,

To be diagnosed with HVC+ SCC is the best way to have SCC. Your chances of recurrence are far less than with HPV- SCC. The Tx will be tough but your outlook is good so do remain positive as you imbrace your cancer. IMO where you get your Tx is critical so I would highly recommend you seek an opinion from a NCI Designated Comprehensive Cancer Center close to you.


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: Jul 2007
Posts: 939
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Posts: 939
We all totally get the "head spinning" thing....it is so overwhelming.

You will benefit so much by just reading all the posts here. There is so much to take in but slowly but surely you will get your head wrapped around this and start a plan of action along with your physicians.

You have your youth and determination going for you (and of course that HPV+ dx) plus you have found here a great source of information and emotional support.

All of us will back David on being seen at a Comprehensive Cancer Center (CCC)....their multidisciplinary approach and the fact that their head and neck departments see 100s of cases a year gives you the best chance of a good outcome.

We wish you the best on the start of this journey...

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Oct 2011
Posts: 805
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Hi Ray,
I personal messaged you. Please keep in touch.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Jun 2007
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Welcome to OCF! Not sure if I missed something or not, where exactly is your cancer?

At this time anyone who offers to help you write down their name and number and let them know you will call them when the time comes. Having a newborn is alot of work and doing it while going thru treatments will be difficult. You will need help and I hope you will not be too proud to accept it.

Your very best option is to go to a top notch cancer center. Here is a list of the country's top treatment facilities for oral cancer.

Top Cancer Centers

Now is the time for you to eat all your favorites. Dont worry about gaining weight, eat everything now so you have no regrets. Your sense of taste will probably change for a while and swallowing may become difficult so eat now.

Best wishes!!!


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
Joined: Jul 2009
Posts: 1,406
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Posts: 1,406
Ray, adding my welcome and I agree with all the previous posters. That your cancer is HPV+, as I'm sure you're learning, is a very positive development. With a good medical team, your obviously excellent frame of mind and the support of your family and friends you'll definitely come through this. Although all of us will tell you that whenever chemo and radiation is involved, things will at times be tough.

But I have total confidence in you. Please keep us informed all along the way. Whatever questions might arise there will definitely be someone here with a knowledgeable answer.

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
Lady1
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My husband was diagnosed on 10/1- so I can tell you the head spinning gets better. I can now say "cancer" without crying. Telling family and friends was very hard- but now that we have a plan, we are moving forward and living with this disease. Just to forewarn you though- it takes some time to get all of the things in place for treatment. I wanted my husband to start treatment the week after he got diagnosed, but I learned this takes a bit of time especially to get radiation set up. My husband had surgery on 9/21 to remove a mass from his neck, got positive results on 10/1, and it will probably be 11/1 before his treatment actually starts. I agree with others- go to a place that sees and treat this a lot- if you are in NY Sloan Kettering would be a good choice.

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Posts: 15
Hi Ray,

We are about to start our treatment this MONDAY at Sloan and we can PM about it. In fact we are neighbors!

My husband was dx in 9/6 and after visiting Mayo, MD Anderson we chose Sloan. Being from LA we did not like UCLA. Our tumor is inoperable which means only chemo radiation. that helps narrow options. (but its better i think to be smaller and operable!) As you find out more you will see what options exist.

we are terrified also of what is to come and I have been taking to heart Christine's and David's advice about calorie intake and hydration!

In NY, Mt Sinai has a different approach than Sloan. I think they do induction and Sloan does concurrent. It's like the bloods vs the crips!

being a newbie I can only commiserate. The pros here know lots!
Hang in there. Take it One Day At A Time is my internal mantra.



Amber
Caregiver to 63 yr HPV+, BOT SCC, T2-3N2cM0,
Dx 9/6/12, Tx 10/12- 12/12,
Cisplatin x3, 35 x IMRT;
PET 12/15/12 Clean
PET 3/14/13 Clean
PET 9/17/13 removal of lymph node mediastinum bx HPV+,
10/13/13 SBRT 5x area around node
PET 1/6/14 -clean
CT 6/14 -suspicious
CT 11/14 - 5 spots confirmed
12/14- chemo
CT 1/15 -stable
CT 3/15 -chemo ended; mixed results. Some spots better but new one appeared also in left pleura
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