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Confirmed Diagnosis

lyolan1
Posts: 95
Joined: Jul 2009

Well as of yesterday, I have definitely been diagnosed with the BIG-C. The DR. believes I have HPV related Squamous Cell Carcinoma(is that spelled right?)in my head/neck. He feels that I may have caught it early, I hope. I have a PET next week and a neck disection for the following week. Radiation/chemo to top it off. When I first heard the news I could not believe it. I have a small lump on the left side of my neck, no pain or discomfort. We do not know the source until the the neck disection/PET. After I came to terms with the lab results, I broke down and cried. I have read alot of the posts on the discussion boards. It is good to know that there are people that I can talk to who can relate to all the fears and insecurities. I have a wonderful wife and (2) great kids(boy 15 and a girl 13), friends, and the discussion boards to get through this. Oh yeah, lets not forget the Doctors and all the knowledge and technology that has been accumulated over the years. That thanks goes out to all the pioneers that came before today. If it turns out that HPV exposure 20 yrs. ago is the source(if I understand it right), I almost want to scream "why isn't this HPV and head/neck cancer connection being shouted from the roof tops"? I have never heard of HPV in men. Is it that new?
Lucky for me, I have a great support network. It will help me get through this battle with an ugly disease. The discussion board has helped me face this head on. Especially a great guy named JK. If I am going to fight this battle I like to know the details, as grim as they are. I have a lot to live for and I am not going give up. Got to keep my mind right, eat right, and do my best to keep focused on the other aspects of life. At the moment, it is in the hands of the doctors and beyond my control. For me, thats a tough one to swallow. I have to remember the Bob Marley tune " Every little Thing, is Going to be Alright". Bye for now. Alex.

jtjones56's picture
jtjones56
Posts: 21
Joined: Apr 2008

I know the feeling. I had a sore throat for about a year and kept being put on antibiotics - I finally went to an ENT and discovered I had Stage 3 Base of Tongue Cancer. I had radiation and chemotherapy and the tumor is gone. I am living a normal life again and continue to go for follow ups.

You'll get through it one day at a time. No, it is not fun. And thank God for the support networks and family - I felt like giving up at times but they got me through to the end of my treatments.

Good luck and God Bless. You are a young man. You will be fine. Hopefully you are not smoking or drinking. Mine was the result of many years of smoking and drinking and the HPV virus. I quit drinking and smoking and hope to continue to be well.

lyolan1
Posts: 95
Joined: Jul 2009

Hi JT,
I'm glad to hear that you are doing well. I am not a smoker, however, I have been known to have a few on the weekends. I made it through last weekend and overcame not haveing a beer at the beach while 4-wheeling to secluded spot we go to and after not having a few after a round of golf. It was tough but I made it. The mindset I have is that it will be like training for another marathon, except the treatment sounds like it will be a marathon that is "Heartbreak Hill" all the way. I hope that I have the energy to maintain work in the beginning stages of radiation.
JT, you know what is weird, aside from this little marble size lump in my neck, I feel fine. No pain at all. No synptoms that I can detect. I had a bad sore throat in March while skiing, went away in (2) days. Weeks later I noticed that my percieved swollen gland was still there. I had a physical and decided to ask my primary, the beginning of my oddessey. Alex.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

There are a lot of interesting articles on the web regarding this subject, I never made the connection between HPV and oral cancers and after reading these articles am AMAZED it is not the hot topic on every news show and magazine. Forget about Michael Jackson, lets save our kids from HPV related cancers by educating them on safe sex practices. IF we dont, HPV related cancers could be 10 times worse then alcohol and tobacco related cancers. (Thats a direct quote from one of the articles I read).

Hang in there and take one day at a time. Keep a positive outlook and laugh your way through your treatment(s). Smiling is a form of medicine :)

Sirena

lyolan1
Posts: 95
Joined: Jul 2009

Hi Sirena, It is good to hear from you, I hope all is well and you are living life cancer free. Did you also have SCC? I will try to laugh through the treatments. I know that it will be laughter sprinkled with a healthy dose of sarcasm. What ever it takes. Alex.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

BUT, I'll tell you what my Onco Team told me. If you have to have cancer HPV Positive SCC is the one to have because it is less aggressive, responds very well to treatment and SCC is perhaps the most common and therefore well understood.

So, now we move on toward the goal of getting you through treatment and on to a new normal. We are all here for you.............take advantage of that.

I am not a health professional but I have been 2 years down the road further than you AND I have learned so much from the caring experienced folks on this board that I can tell you with certainty that you are going to make it. My Docs told me the fight would be 2/3 attitude and 1/3 technology. I know already that you have the attitude. Sure, take time right now to absorb all of this that has unfortunately rushed into your lives. As my wife granted me, I hereby grant you the exclusive right to your very own PITY PARTY, once a day, no more than 15 minutes. Do it by yourself or with a loved one. Do it behind a closed door or out in the open. But, just do it. Then, at the end of that 15 minutes......MOVE ON. Read a book. Go for a walk. Hug your family. Research the internet. But, move on and don't look back.

The diagnosis is in and in my opinion not nearly as bad as it might have been. You are going to do fine. We're all praying for you and counting on you.............not to mention here to support you.

God Bless and keep us posted.

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, Great to hear from you. I had a nice weekend with my family. Since my acceptance of the diagnosis, I decided that I am going to approach this illness like I was training for a new marathon. I am not a smoker, but a moderate drinker. I gave it up. This past weekend was tough but I made it. I have also decided that I am going to try to squeeze in as much fun as possible before the operation and radiation. It does seem weird to me that I do not notice anything different in me, aside from a little lump in my neck. I guess that I will always have a little denial until they get the lump under a microscope and absolutely confirm it to me. I'm still holding out for a 1/million shot at a misdiagnosis. Alex.

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, I forgot to tell you that I loved the "pity pot" reference. When I read the posts and feel the positive energy, I can't help getting choked up. Good Stuff. Alex.

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

I am too 48 yr old and very scared when i discover a little lump myself in my soft posterior palate back in January, i right way visit my ENT who took a biopsy and confirmed that was adenocarcinoma in low grade on one small salivary gland, thank god was not squamous .
Since that , i have surgery to removed the cancer little tumor ,healed and took 35 treatment of radiation ,i did very well and never need the peg or had any complicacions ,never stop working even that i work for a doctor as a nurse.
I wish you the best of the world for you recuperation, keep you mind positive ,radiation is not easy ,i only have that but because it was directly into my palate some sores show in the 3rd week and was not fun at all but, i deal with it and God help me ,,Pray and ask him to help you go through the treatments and to your family to be at your side.
Everything dx and treated on time is good and you will be ok.
Good luck,
Roxie ,fl

lyolan1
Posts: 95
Joined: Jul 2009

Hi Roxie, Thank you for your kind words. Every little bit helps. It is very nice to know that there are so many good people like you in the world. I am so glad to hear that everything has turned out well for you. Your faith in God,support from family, and a positive attitude has helped you overcome this disease. I will count my blessings and hopefully come out fine in the end. Then, I will be able to offer my own words of encouragement. Alex.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Alex

Just joined the site. I had a similar experience. Had a lump on the left side of my neck. Spent 3 months going from doc to doc, all saying it was nothing. A couple of negative needle biopsies, and a couple of CAT scans. Finally saw an ENT that said he wanted to take the lymph node out.....and said that he wanted me 'out' when he did, since it may be SCC! I was floored. Never smoked or drank (much).

Woke up from the surgery with a radical neck dissection and lots of staples! Healed up just in time for 30 radiation treatments, along with 3 rounds of chemo. Back then they called it 'SCC with unknown primary'. Pretty scary that the surgeon spent 7 hours taking apart my neck and could not find the primary cancer. Now I hear that like you HPV was a potential source.

Good news is that this was in January 2004, and I'm still here! As I said, it is a marathon. Don't try to sprint. Don't expect things to happen quickly, and try not to get frustrated when they don't! It will be a roller coaster.....many lows, but just as many highs! At the end of the ride you will learn a lot about yourself and others.

Also, there are lots of 'horror stories' out there. All I can say is that everyone is different. Some don't want to hear about everything, while others read up on everything they can. The choice is yours. There is no 'wrong' choice.

As for the radical neck, my first look at the left side of my neck was a shock. Good news is that the scars healed quickly, and better that I ever expected! I'm sure that you will be the same.

Radiation was not fun, but now I hear that they are more 'surgical' than they were with me. Since they didn't know where it was, they gave me radiation 'everywhere'....both sides of my neck, and front. Yikes! With 30 visits you get to know the nurses, techs, and docs well. Most were awesome! Also met some great people in the waiting room. You will be amazed at the smiles you see in this situation.

Lots of nights with mucous as my salivary glands fought back, and lost taste. Good news again is that I still have spit (not as much, but there!)....and my taste buds came back fast. Worst thing for me was a restriction at the top of my esophagus from the radiation....but today the smarted targeting will make that less of an issues. Even for me, it only means I chew my food like my Mom always told me to! If you do end up not wanting to eat, the good news is that there are things to drink. I lived on Boost (chocolate!) for several weeks. Eat what you can, but don't panic about food. You will be able to eat later. Trust me. Others told me that they kept eating all through the radiation. Again, everyone is different.

My beard that I grew to hide my scar also started falling out soon after chemo started. Drat! My beard still does not grow. Kinda nice....my hair is gray anyway, and now it doesn't take long to shave in the morning.

As for Chemo, I didn't have much trouble at all. No nausea (great drugs!), and just a few days being tired. Again, the nurses and docs were great (as were the other patients). Again, everyone is different....but don't believe the hype! Just imagine that poison they are putting in you is chasing down and killing any cancer that may have escaped the scalpel or radiation!

Sounds like you have a great family situation. That will help. I can tell you that what got me through was the three F's.....Faith, Family, and Friends. You will find out how much your family means to you. They will find out how much you will need to lean on them. Don't foget this....in my situation my wife needed as much help form her friends and family since she had to take the brunt of my 'why me' sessions and 'get me this, get me that'. Make sure that she takes care of herself too.

The coolest thing is how amazing you kids will be. They will make you laugh and cry.

No matter what your faith or beliefs are, there is a definite spirituality to the journey. You will learn a lot about yourself, what is really important, and who your friends really are.

Sounds strange, but I am better for what happened to me. Sure it was tough, but I got through with the help of a whole bunch of good people.

You will get through this. Sure, there will be times that you feel something 'funny' in your neck and say 'oh no!' only to find out it is something there all along. I did this, and it turned out to be a nylon stitch from the surgery! Remember, you are allowed to have crummy days. Just try to make the best of them to get to the good days.

I missed 2 months of work. But have only had a couple of sick days since! Remember too, cancer survivors do get colds and sore throats!

I eat what I want. My taste is great. I have energy. I do the things I used to do. One thing that you will find out.....you actually will forget about the good things you learn in your experience. You find yourself starting to worry about silly things, forget to say prayers, forget to thank people. All I do is kick myself once in a while and then remember how lucky I am.

You and you family will be in my thoughts and prayers. Life is a journey. and cancer is just a detour. You will soon be back on the freeway!

George

lyolan1
Posts: 95
Joined: Jul 2009

Hi George, great to hear from you. This diagnosis came out of nowhere. I still felt fine the day of surgery. I like to think of it as a surreal oddessey. I still cannot believe that it is happening to me. My wife and family have been awesome. This scar is quite an addition to my appearance, it scares people a little. the doc said that the cancer was hiding in my tonsil and that he felt that it was unnesessary to biopsy any other spots durring the surgery. He also said that it was encapsilated? I have my oncologist meeting in 9days to find out the lymph biopsy and the course of action. I guess I will take some time to get in a little more fun before the rad/chemo. I hope that your summer is going well. I will let you know the results when I get them. Alex.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Alex,

Good to hear from you. Sounds like you got some good news.....I think 'encapsulated' is a good thing. That sounds like it was 'contained' to me! Also, that fact that the doc didn't biopsy other things is also good news. With my surgery I think he biopsied everything anywhere in my neck!

How is your 'feeling' and movement? When I woke up from surgery my left shoulder felt like 'wood' when I touched it. Basically I had little feeling in my shoulder, neck, ear, and scalp. All that is gone....just a little tingly 'asleep' feeling in my earlobe! Let your body do its thing. It may take time, but it is amazing how the body heals.

As for the scar, I know what you mean. At first, it was a shock. But again, it is amazing how fast you will heal. Today some people don't even notice that I have it! I would never have guessed that when I first saw it. Just look at it as a 'battle scar' in your defeat of cancer!

Take care and heal up. I remember thinking 'hey, I want to get better just in time to let them zap with chemo and radiation!'. Remember that things will not move as fast as you like. There will be times that you swear that the clock has stopped. You will meet some great new people on your journey. Take the good advice, and try to block out some of the 'doom and gloom' that you may hear. It's your journey, and you are allowed to make some of the rules. Just listen to the docs most of the time......and your wife ALL the time!

One thing I did that helped me was to keep a journal. It was a way to keep track of important stuff (that the doctor may ask about....food, temperature, blood pressure.....some blood counts) as well as things that I was thinking about. Some days I wrote a lot....some days a few words. My kids also decorated it with stickers and other things. It also let me keep my bearings on my treatments. Again, this may not be for you.....everyone is different.

Let me know how things are going. I'll be rooting for you.

Take care,
George

jgw7838
Posts: 18
Joined: Jul 2009

i know what your going through i also was diagnosed with hpv-16 scc of my right and left side of my neck, i was diagnosed back in june and have had a pet scan and 1 biopsy,and a tonsillectomy and are scheduled for another one on aug 6th ,they are trying to find the primary area then we will go from there not for sure how i got it been married 21 yrs ,have 2 children a step-daughter and 3 grandaughters ,it was a shock and was scared at first cause my dad passed away from prostate cancer back in may of 1994, but technology and medicine has come along way since then. you will be in my family's prayers ,but stay strong and believe and have faith, you are not alone.
god bless ,John

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