| Joined: May 2015 Posts: 8 Member | OP Member Joined: May 2015 Posts: 8 | Hello everyone. I'm scared. I'm 52 and was just diagnosed a week ago with squamous cell carcinoma with the originating tumor in my tonsil area. Thought it was just a swollen thyroid gland from having a cold. Silly me. Surprise, surprise. Having lost my father to pancreatic cancer when he was 43 and I was 8, the word, "Cancer" scared the hell out of me. My wife and I have 2 young boys who we have not told yet until we decide on which treatment we'll choose. Next week, we're meeting with a radiologist/chemo team in LA to try and help me choose between surgery first to remove my tonsils and some extra tissue and several lymph nodes near my chin, OR just do chemo/radiation to get rid of the cancer first, and then see if that does it. Your advice, experience, understanding and compassion would be very welcome at this time. My wife and I understand how lucky we are that the doctors tell us this is a "Treatable" and "Curable" cancer. But that doesn't stop me from being frightened. And I want to make the right choice, not out of fear, as to which road we walk. I look forward to hearing from you. Thank you... Sincerely, Adam
52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Adam, I'm in LA too. If there's anything I can do to help please let me know via PM.
I too was told by my radiation oncologist that they'd "get me through this". And they did. We're all here to help. You're now a member of our family.
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sorry you had to join, but welcome, Adam. I had tonsil cancer also that was diagnosed in 2009, as well as many others here, some with BOT, which is in the oropharynx also and treated similar. You're doing right by joining here, and educating yourself to make an informed decision with your family and doctors. It's difficult to say what to do since we're not doctors, don't have all the available information, but we can say what we went through and any insight into that. You're right, tonsil cancer is treatable, and has better prognosis if HPV related, so the biopsy sample can be tested for that, and should, and sometimes a p16 marker is used first. Anyway, all these terms will become familiar to you as time goes on. I didn't even know what an oncologist or an ENT, Ear, Nose and throat doctor, an otolaryngologist, was when I started. Having choices are good. Basically, this cancer is treated with Surgery, Radiation or chemoradiation or a combination thereof. See the below OCF link with treatment information. Just about anything you need to know is here, and of course, ask your medical team also, and always keep them up to date. Try to start your signature when you have a chance. It will avoid unnecessary questions, and let everyone know the type of HNC cancer you have, how many Lymph nodes are involved, what tests were done, your stage, tumor size, grade if you know, etc. Everyone has one at the bottom of their page, is limited to 500 characters, and you can see what everyone's else's treatment were also. http://www.oralcancerfoundation.org/understanding/If you have any questions, ask anytime. Good luck.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Adam, I'm sorry too that you have need of this fabulous site. Of course you are scared. We certainly were, actually I was terrified. Your team is correct though, tonsil/ Oropharyngeal cancer is a very curable disease. Paul has given you great advice and a great link to help with further information. I want to add by asking and advising you to get to a Comprhensive Cancer Center. A CCC. These centres treat many many with this same disease and have experience. A local cancer Center may only see a couple of tonsil cancers a year. Research has proven CCC's to have better outcomes for their patients. They have a whole team approach with your case discussed by a tumour board. This consists of surgeons , chemo docs, radiation docs , dentists, Speech therapists, dieticians and many more. Read as much as you can, ask many questions. We will all help you. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: May 2015 Posts: 8 Member | OP Member Joined: May 2015 Posts: 8 | David-Thank you so much for responding. And I shall go thru the site and learn and get informed. From the bottom of my heart- Thank you.
52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
| | | | Joined: May 2015 Posts: 8 Member | OP Member Joined: May 2015 Posts: 8 | Hi Paul! Thanks so much for your response. I will add the details to what I've got and so appreciate your kindness. Adam
52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
| | | | Joined: May 2015 Posts: 8 Member | OP Member Joined: May 2015 Posts: 8 | Hi Tammy! Thank you so much for your response. I feel like I'm very lucky and even luckier to have found this blog. With all my thanks- adam
52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
| | | | Joined: May 2015 Posts: 8 Member | OP Member Joined: May 2015 Posts: 8 | Hi Everyone! My wife and I are going to meet with the chemo/radiation team this Wednesday to hear their thoughts. My cousin, who is a bio-chemist, will be there via phone at my request, if they allow that. He's been working with various companies on a cure for this type of cancer that involves T-cell and the immunotherapy route, as it seems to be the future of curing this dreadful disease. I'm looking forward to hearing what this Board says. The surgeon isn't pushing surgery, but I get the feeling it's where I'm leaning at this time. I so appreciate having this support group to turn to. Yours- adam
52 years old, P16 positive (HPV) Primary tumor is in my tonsil, 2 lymph nodes under chin are affected.
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Welcome to the best club nobody wants to join. I'm no doctor, but my guess is the trifecta surgery, rads, with chemo. All three can be brutal on the body, the good news, being HPV pos means you have a good chance of kicking this in the but. However the next 4-5 months are no picnic. Go a head and tell the boys your situation. I told mine. Hopefully your boys can help out around the house, yard, garage. I was so weak when I was deep in treatment, that taking out the garbage was an event. Get as much of this stuff done now. Hopefully next year you will be able to look back on it as just a rough summer and that's all. Mine was just a rough winter. Good luck and post often. It really helps you and everyone else on the boards.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | That's great, Adam (under the trying circumstances of course). Glad you've got a solid team both medically and personally. As folks have said, the HPV positive status is a good indicator. Please keep us posted of your doc visit tomorrow. I too can attest to the fatigue issue. By the end of the second week of rads I could barely get out of bed. But you, like me, will definitely get through this. 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
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