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#194195 - 04/20/17 05:20 PM Hello - T0N1M0 HPV+ (Occult primary)  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
Hi all,
I am a new member.

Background:
Upper respiratory infection at New Year. Had a left cervical lymph node that would not reduce in size after a course of antibiotics.

Referring to ENT who diagnosed 2nd branchial cleft cyst. Had ultrasound, MRI with contrast and fine needle aspiration. "Cyst" was removed 3/6 and on 3/7 diagnosed with P16 positive SCC.

Biopsy inpatient laryngoscopy on 3/16. All samples were benign. Occult primary. PET/CT showed no activity other than the area of the neck healing from the node removal.

Referred to Stanford and will have TORS on 5/9 - palantine tonsil removal and left back of tongue denuded. If primary can be found we can reduce radiation volume.

So glad I found this website. Look forward to your insight and support. I have a lot of anxiety about not being able to work and radiation fatigue. Hope people can share their experiences with me.

Thank you,
Stef
(Typing on phone apologies for any typos)

Last edited by Stef H; 04/20/17 05:27 PM.

Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194196 - 04/20/17 08:46 PM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: Stef H]  
Joined: Jun 2007
Posts: 9,648
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,648
PA
Welcome to OCF, Steph. You have found the very bast place for info and support.

Hopefully you will be one of the lucky ones who sails right thru rads with barely a side effect. The people I see who do that are the ones who focus on what is most important.... their intake. Every single day you need to hit the bare minimums of taking in 2500 calories and 48-64 oz of water. This should continue until at the very least you hit the year anniversary post rads. Starting right away, eat all your favorite foods and have dessert too. You definitely do not want to go into this with cravings. Your sense of taste will change and your ability to swallow will also be affected by rads. Its only temporary but when going thru rads, it can feel like its forever until you can eat normally again, so eat now.

Most patients are able to continue working at least thru the first few weeks of rads. Of course this depends alot on what type of work you do. When going thru rads you will become susceptible to picking up the most minor illnesses quite easily. But a mild common cold can make someone who's immune system is compromised very ill. Its best to pay attention to avoid crowds, frequently wash your hands, use hand sanitizer often and avoid any situation that brings you in contact with young children (usually walking germ factories) or anyone who is sick. Some (not common, maybe only 10%) patients have worked part time thru their entire treatment and recovery while others have more intense reactions to rads and have bothersome side effects in the first week or two. Other patients have flexible jobs where they can work at their leisure from home. Many, many options are available to patients when going thru rads. I suggest playing it by ear as you do not know how rads will affect you. Rads gets progressively more difficult as treatments continue. It continues working well after the treatments stop. The first few weeks after treatments end are usually the most challenging.

Line up helpers. You may be on strong pain meds which make you tired and most find they are unable to drive. Call the American Cancer Society to see if there are volunteer drivers available to help get you to your treatments. Many patients are ok at least the first 2 weeks to drive themselves, some make it thru the 4th week but very few can drive thru the entire 6 or 7 weeks of treatments. Im hoping you have caregivers with you to help take care of you while your going thru this. If not start lining up those you are the closest with to help out. Theres a million small things that can be done to help you get thru this easier.

Stick with us and we will help get you thru the upcoming appointments, treatments and recovery. Its not easy but we have been there and know all the little tricks to make it as easy as possible. Read and absorb as much as possible (main OCF site has TONS of info) to make yourself the very strongest advocate you can be. Stop in often, ask questions and know we are in your corner.

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
#194197 - 04/20/17 10:29 PM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: Stef H]  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
Hi Stef.... Christine has great advice! As far as working through rads, I am on week 3 and not doing too bad. Work is really on how you feel everyday. I am still doing 40 hours. My short day is Thursday due to chemo and rads. You may also want to consider a PEG tube to be safe. It will help you get nourishment. I am positive everyday and I am agressive in my fight. Develop a good support system! God bless!

#194199 - 04/21/17 04:56 AM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: ChristineB]  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
Thank you so much. This was very helpful.

I do have someone at home who can help and I have a good group of friends. Will be sure to not be shy and ask for help.

Swallowing has changed somewhat; I need to drink water with my food. I guess it's good practice!

I read your profile - wow, you are an amazing fighter. It's inspiring. Thank you for sharing your knowledge smile


Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194200 - 04/21/17 04:58 AM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: cougardad62]  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
Thank you CougarDad! Wishing you all the best in your treatment. I tend to be positive, too and want to blast this cancer wherever it may be! Thank you for sharing your personal experience.


Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194202 - 04/21/17 02:58 PM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: Stef H]  
Joined: Oct 2012
Posts: 838
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 838
Toronto, Canada
I would just like to add my welcome to ChristineB and Courgardad's. Sorry you had to join our circle of friends but everyone here has been through the cancer journey in one capacity or another; we understand what you're going through.

My husband's cancer also manifested itself initially as swollen lymph nodes and mouth ulcers. He was given antibiotics, the swelling went down. SIx month later, it came back and we were referred to the hospital where he had a quadroscopy and cancer at the base of tongue, P16 positive. I can never shake the thought that the ENT should have investigated more carefully the first time the swelling appeared. We were traveling in China and he assumed that the water was polluted. I'm glad your doctors acted more decisively. Hoping for the best outcome for you in your case.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#194204 - 04/21/17 04:33 PM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: Stef H]  
Joined: Apr 2017
Posts: 24
Tink222 Offline
Member
Tink222  Offline
Member

Joined: Apr 2017
Posts: 24
Roanoke, VA
Hello Stef!

Welcome to OCF! 👋 (Waving to you)

I'm a newborn here too. Just a little over a week old but have found this site to be an excellent resource for information and life experiences.

Deb


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
#194210 - 04/22/17 01:08 AM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: gmcraft]  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
Thank you for the warm welcome, Deb!


Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194211 - 04/22/17 01:11 AM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: gmcraft]  
Joined: Apr 2017
Posts: 61
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
San Jose, California
Thank you gmcraft - I am so sorry that the ENT was not more aggressive in finding a source. My ENT wanted me to wait on surgery until summer or Christmas vacation but I insisted - feel lucky that I did.

I am sorry for the loss of your husband. Thank you for welcome and good wishes.


Keep fighting friends!

Me
Age 48
SCC diagnosed 3/7/2017
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
#194217 - 04/22/17 11:10 PM Re: Hello - T0N1M0 HPV+ (Occult primary) [Re: Stef H]  
Joined: Jul 2009
Posts: 1,369
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,369
Los Angeles
Stef, adding my welcome. You've come to the right place for help and camaraderie, and you're now a part of our family!

Your story is similar to my own and I'm sure with your great attitude you'll get through treatment with flying colors. I too was diagnosed with a branchial cleft cyst. The first time they did a FNA it came up benign; it was only after removal that it tested positive for SCC.

The notion of a PEG isn't a bad one. I found it incredibly difficult to swallow even water after a couple of weeks of rads. I got to the end, but on reflection wish I'd had one put in. That is, my RO told me the treatment was tough either way but that I could get through it without. And I did. But it wasn't easy.

I also found that the radiation did me in for work. Luckily as a freelance writer I could just take a break. After a few weeks I found I didn't have the energy to sit up for more than 10 minutes at a time, and it took a few months afterward for me to regain my normal energy levels.

Please ask any and all questions here - it's a good bet that someone will have gone through it and offer useful suggestions.

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 8 years all clear in 6/17
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