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#195655 01-30-2018 03:49 PM
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Nancy P Offline OP
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Hi: At Christmas time, 2017, I was brushing my teeth and spit out fresh red blood. I had been feeling something in my right jaw area but no pain. I knew instantly that I was in trouble. Saw my nurse practitioner a few days later. She referred me to a ENT who biopsied the area. It is a squamous cell carcinoma. I don’t have results of HPV test but I am told it’s probably the cause I then had a pet scan and I do not have cancer anywhere else. I live within an hour and 15 minute drive from Moffitt Cancer Center in Tampa. I saw a Head and Neck dr there. I start 35 radiation treatments next Monday at Moffitt.
I have never smoked I do drink but not excessively. I am trying to prepare but I’m a little freaked out.


I am almost 70 years old female. I was diagnosed by an ENT with squamous cell carcinoma 18 days ago it’s thought to be HPV 16 but I don’t have that answer yet I will begin 35 radiation sessions Feb 5, 3028 at Moffitt Cancer Center. My head and neck doc gave me a 92% success rate.
Nancy P #195656 01-30-2018 05:22 PM
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So glad it was caught before spreading, that is if having cancer can be good in any way. It looks like they are moving quick and that's a good thing too. The one thing I would suggest to you is to find a mental health specialist or someone you can speak openly with about whats going on. You will have tons of questions going forth and someone with a background in head and neck cancers can be a blessing. This forum is a great place for info but remember everyone is different.

When I had my cancer treatments, 15 years ago, radiation was a little hot, but I did ok. It can make swallowing difficult as it gets to the end. Take care of your skin, it can easy burn or darken. Like a bad sunburn. They will suggest something to put on your skin to protect it and hydrate it make sure to use it.

Glad your here and I'm sure you'll hear from lot's of good people. Good luck, Bryan


15 year survivor of tonsil cancer. In 2002 I was diagnosed with Stage III squamous cell carcinoma. I had a left neck dissection, teeth removed, and 38 radiation treatments. In 2015 I received a feeding tube and in 2016 a trach, both due to radiation side effects. But I'm happy to say that life has been good to me!!
Nancy P #195658 01-30-2018 08:34 PM
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Welcome to OCF, Nancy! Im glad you found our group. I know its scary being diagnosed with cancer. The unknown always is the scariest. Dont worry, you are among friends here, we have been thru it and will get you thru it too.

For most oral cancer (OC) patients eating becomes a challenge during rads and recovery. Rads affects your sense of taste and ability to swallow. Eat all your favorite foods, desserts too now before rads starts. You need to take in at least 2500 calories and 48-64 oz of water every day.... every single day!!! The better you can do with your intake, the easier it will be to get thru it. During rads you probably will not be able to tolerate drinking alcohol. You may want to talk to your doc about whats ok and what isnt if you plan on drinking alcohol after rads. Many docs advise not to drink after having OC and treatments.

You are being treated at a comprehensive cancer center (CCC). Many of our members have gone there. You have a long drive to get to your treatments. During rads you may be on some meds or as you progress thru your treatments, you may not feel up to driving yourself. Do you have someone to help drive you? You may want to call the American Cancer Society (avail 24/7 so call anytime) and ask about their volunteer driving program. Theres some paperwork to fill out to get enrolled which can take some time. Its a great program made up of cancer patients/survivors and caregivers, Ive done it when I have time. Even if you have someone to drive you, having someone else take a day or 2 a week can be a nice break for your caregiver.

As you tell people about your cancer, you will probably be asked what they can do to help you. Make a list of everyones name and contact info and give it to your caregiver. Tell your friends and relatives when the time comes, you will let them know what they can do. Theres a million small things that can help make this easier for you to get thru. Picking up meds from the pharmacy, walking your dog if you have one, getting your mail, grocery shopping, doing a load of laundry, helping you to keep up with emails, and updating friends and relatives are just a few things that can be a big help.

Im surprised your doc would say your tumor is likely HPV+. Almost all HPV+ OC tumors are located in the base of tongue or tonsil areas. It can happen but its very rare for HPV to cause OC tumors in other locations. Please let us know when you find out. There are quite a few patients who have no known cause. I think its about 7-10% of OC patients/survivors have no known cause. There are so many things that can play a part in why people get cancer so its pretty difficult to figure out when someone isnt a smoker what could be the reason for it. This isnt anything to worry about. You probably have so many things going on that its hard to sleep.

Im sure you are super busy trying to prepare for your treatments to begin. Have you been to your dentist yet? You should have fluoride trays made to wear when your going thru rads. If you havent gone yet, call your dentist right away and get started. Your doc should have ordered a full blood panel done including thyroid (men need testosterone too). This is very important that you get it now to capture what your normal number are. Later after finishing rads you may have thyroid issues like most of us here who have gone thru rads. You cant go backwards and get what your normal numbers should be thats why its so important to get it done prior to starting any treatments. Taking a little thyroid pill every day to regulate your thyroid isnt a big deal.

Im sure Ive only scratched the surface with addressing a few pre-treatment things. Feel free to ask questions. We'll do our best to help you. We have been there and completely understand everything you are going thru. Spend some time reading posts and also on the main OCF site to learn more about OC. An informed patient makes for a strong advocate for themselves.


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
BryanB #195666 02-01-2018 07:55 AM
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Nancy P Offline OP
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Thank you Bryan for reaching out. I can’t tell you how much help this support group has to me already. I spent a couple hours reading through it and it became clear to me that I need to keep my caloric intake up as high as possible and hydrate. I’m trying to stay positive and get ready for the battle. I will win this fight.


I am almost 70 years old female. I was diagnosed by an ENT with squamous cell carcinoma 18 days ago it’s thought to be HPV 16 but I don’t have that answer yet I will begin 35 radiation sessions Feb 5, 3028 at Moffitt Cancer Center. My head and neck doc gave me a 92% success rate.
Nancy P #195667 02-01-2018 08:07 AM
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Nancy P Offline OP
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Thanks Christine. I have asked my dr for results of the HPV test. I should get a call about the results today. I’m only driving myself this first week. After that, my girlfriends will drive me on Mondays and Tuesdays. My husband and I will stay in a hotel by Moffitt on Wednesday and Thursday nights since I have 2 treatments on Thursdays for the last 5 weeks.

My tumor is on my tonsils on my right side. I still have no
pain although I’m beginning to feel a little funny best my ear.

I thank you so much for your response.


I am almost 70 years old female. I was diagnosed by an ENT with squamous cell carcinoma 18 days ago it’s thought to be HPV 16 but I don’t have that answer yet I will begin 35 radiation sessions Feb 5, 3028 at Moffitt Cancer Center. My head and neck doc gave me a 92% success rate.
Nancy P #195671 02-01-2018 02:58 PM
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Nancy P Offline OP
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I just got a call from my dr and I am hvp positive. I have a question. Has anyone had vertigo issues with SCC. I have had vertigo a couple times in the past so maybe no connection. I have had it off and on for the last 3 days


I am almost 70 years old female. I was diagnosed by an ENT with squamous cell carcinoma 18 days ago it’s thought to be HPV 16 but I don’t have that answer yet I will begin 35 radiation sessions Feb 5, 3028 at Moffitt Cancer Center. My head and neck doc gave me a 92% success rate.
Nancy P #195672 02-01-2018 04:56 PM
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Yes, vertigo has been discussed here by OC patients/survivors. Im not sure about how exactly they are related. If you type the word vertigo up in the search box (towards the upper R of any page), you will get many pages of previous posts discussing vertigo.

Thanks for the update about being HPV+. Now I understand your situation better since you mentioned your tumor is in your tonsil area. I had misunderstood you and thought your tumor was located in your jaw. Almost all OC where the patient is HPV+ their tumor will be in either their tonsils or in the base of their tongue. I have yet to see anyone where the HPV+ tumor is anywhere else. I know it can happen but thats in very rare cases.

You are fortunate to not be in pain. Some patients are and some patients the tumor does not hurt at all. I wasnt in pain either, the first time I went thru OC I had tumors in 2 separate areas and neither one caused me any pain.

Im so glad to see you have your transportation all worked out already!!! That can be a big challenge when you need to travel over an hour each way. It gets especially difficult the further you are along in your treatments when you start not feeling the best. Thats nothing to be concerned about. Hopefully you will be lucky and not be bothered with side effects. That all gets tied together with how well you do with your intake.

Keep up your positive attitude!!! Being positive will help make this easier for you. We will be here to help too.





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
Nancy P #195676 02-03-2018 12:06 PM
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Nancy P Offline OP
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Thanks Christine


I am almost 70 years old female. I was diagnosed by an ENT with squamous cell carcinoma 18 days ago it’s thought to be HPV 16 but I don’t have that answer yet I will begin 35 radiation sessions Feb 5, 3028 at Moffitt Cancer Center. My head and neck doc gave me a 92% success rate.

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