52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
I’m in the club no-one wants to be in as a newly diagnosed cancer patient. I’m a former smoker who quit daily 1/2 pack a day habit 19 years ago but still smoked socially up until diagnosis about 4-5 packs a year. Otherwise healthy and on no medications. My details are a mildly painful mass in my left neck just under jawbone that got big enough for my doctor be concerned when I had annual physical mid September this year, and he wanted it looked at by an ENT. A needle biopsy and then an ultrasound guided biopsy indicated a necrotic lymph node he thought was a brachial cleft cyst.
Mass was removed on 11/21/22 as well as lymph node below it which came back negative. ENT stated he expected a 45 min surgery but it lasted 3 hours as the mass was larger than expected and very inflamed. He said several lymph nodes were “stuck” to it and he took them as well. Also, upper margin went under my jawbone so he did his best to get all of it but may not have. Stayed in hospital overnight with a drain then went home. Pathology report came back with HPV+ P16 squamous cell carcinoma. Was referred to Penn Medicine in Philadelphia. Met with a surgeon yesterday. He saw no primary just as my ENT said, and suspects tonsil and/or base of tongue. The plan of attack is PET scan next Friday and TORS surgery with left neck dissection the following Monday. Then depending on outcome radiation hopefully just on neck and not throat.
I found this site and it’s already been very helpful so I will provide updates in this post to hopefully help others as I go through this. I’m now over the initial shock and I am optimistic I can beat this. I have one of the best surgeons treating me who is a TORS expert and was part of its founding as a treatment, and now that I have a plan can concentrate on surviving and not worrying. Reading this forum I know it wont be a walk in the park but there are so many survivors here it gives me a lot of hope. Praying the PET scan shows only regional spread.
God Bless all of you,
I was treated at the University of Pennsylvania and your Surgeon sounds like mine that treated me back in 2004 for Base of Tongue cancer. He wasn't doing the TORS surgery at that time but about a year later told me that I would have been a good candidate for it when he started. He has many Patents on the instruments he developed for the TORS.
I had the surgery and was given Radiation only since my Surgeon stated he got it all. Chemo was a backup plan in the event I might need it which I am happy to say I did not.
There are a lot of knowledgeable people here to help you get thru this, so lean on all of us, we will get you to the finish line.
Don't forget to read the 1st post (Superthread Read Only) on this site which has a lot of helpful hints.
My Best to You and Everyone Here0
Thanks for sharing your story, it does sound like the same surgeon. I’m also a Marine (E4) that served in the early 1990’s0
Quick update: My MRI scan with contrast from 10 weeks ago from a different health system was re - analyzed by my current treatment team. They noted some findings that the original report did not. There is a potential spot on my left tonsil that looks suspicious, no obvious right lymph node involvement, and a hot spot in my right parotid gland that could JUST be inflammation or another suspicious area. Doc wants that checked with another MRI first week of January.0
paulawork0404 Member Posts: 2 Member
I was diagnosed in may with the exact same cancer stage 3. I haven't had surgery. I had 3 rounds of chemo and radiation everyday for 8 straight weeks. Mine started at base of tongue, with mets to 3 lymph nodes in neck. Had a very large tumor in left side of neck just under jaw. Radiation really did a number on my neck. Shrank my esophagus and burnt my saliva glands. Still not working. I have to drink water constantly to keep my mouth from getting too dry or it hurts. Tumors have visibly shrank. Have a PET scan on the 19th. Then oncologist Jan 6th to find out my next step. Good luck with everything.1
motorcycleguy Member Posts: 470 Member
It's impossible to hear this news and not be scared by it - all of us are/were!
I'd just like to throw out that the survivors on here are proof that you can get through this...
My advice, is to rally your support team (wife? girlfriend? partner? good friends? neighbors?) Let them know what's going on. You will be amazed at all of the help and support they will give you!!
I know this probably sounds crazy - but the most important thing of all, is to keep a positive attitude. Your strength will inspire others!
On a final note ... it can be a challenging process - but some day, you'll look back on it all. It will change your outlook on life forever. You'll realize what is really important, and notice the beauty that surrounds you, every day!
Hang in there, bud,
Thanks for sharing your story and I hope your scans are good. I’m preparing for the side effects I’ve learned about and just knowing what to expect actually makes it a little better. I just finished my PET scan this morning. Good luck to you as well.0
Thank you. I’m more scared for my wife. We don’t have children and I’m not ready to leave her alone yet. I’ll do whatever it takes and deal with the pain but she has to deal with seeing me suffering so that hurts me the most. Best thing I can do is stay positive and prepare for the long recovery.0
Smitty, keep the positive attitude and trust in god, family, and your medical team. It sounds like you are in good hands. I had neck dissection,Tors, right side same symptom you had just to the right side. Followed by 33 rad treatments. Eat everything you want and prepare you a list of things to help you get through if this is your action plan. Dec. 12 will be 4 years post treatment for me you can do this Smitty.
Best of Luck and keep the faith!0
Up early today for a big breakfast the day before surgery. My PET scan showed the primary in my left tonsil and no distant spread on Friday, but a review of the lymph nodes theytook out last month showed extra capsular spread. So I think they means chemo will be necessary. Trying to take it one step at a time but I’m wired to need to know everything so I can plan.0
Very good Smitty, eat all you can. Thanks for the update. You are right to be aware of all aspects of your case as best as you can, then you know what possibly may be coming up and can prepare for it mentally and physically. Having all the info you can help you and helps your doctors communicate with you and you are working as a team to get you better.
Wishing You the Best
Take Care God Bless-Russ0
motorcycleguy Member Posts: 470 Member
Well, bud - that's the perfect answer. You sound like a very hardy guy - and you're concerned about her. You're a lucky man, to have her in your life. You have a great attitude - and that's priceless!
I don't think you'll be "leaving her behind" for a while - so it might be better to focus on next steps.
Radiation and (potential) Chemo can be challenging, for sure. I always give the same advice - EAT EAT EAT - all of your favorites and lots of them. You will almost inevitably lose weight ... and the more you can hang onto, the better!
I don't know if your Oncologist recommended a feeding tube. If they do - you probably should follow that advisement. It's certainly best, if you can continue to eat by mouth ... but if not - you will need the calories.
Treatment takes a lot more energy than you may expect. When your body is telling you that you need REST - listen to it!
As I say, just seeing your response, here - you appear to have all the weapons you need, to fight this. I will bet money that in 6 months or so - YOU will be on here, helping others get through it!
Give your wife a big hug, and let her know that you appreciate her. She WILL be the one who helps you through!
Thanks for the encouragement. I’m in my hospital room now recovering from surgery. Going to keep this post short and try to relax, rest, and let the pain meds do their thing. God bless!
Remington25 Member Posts: 88 Member
Smit ~ My TORS was complex. Small part of tongue removed, soft palate removed, epiglottis removed, etc.... The recovery was very hard on me for 2 weeks. I was in the hospital for 5 days. My point is, once it starts feeling better it goes pretty quick! Just know that you will feel better and when you look back you will be amazed. Good luck and keep us posted as we care more than you will ever know!0
I had a level 1-4 neck dissection and a biopsy of left tonsil. Doc says depending on pathology I’ll be back in for TORS after Christmas. He told me if he did both together it’s a higher risk for hole between neck and throat which I read about on here. Home now with 2 JP drains, a crooked smile, and managing the pain as best as I can. Can’t wait to get theses drains out but they are still filling up pretty good so probably a few more days. I’m able to eat soft foods a little and drink so I’ll take what I can get. Trying to take it one day at a time. Anyone have any ideas for showering with the drains in? My wife came up with the idea of wearing a female sports bra and pinning the drains to it. Told her as long as there are no pictures I’ll try anything! Definitely made me laugh and I may just try it!0
Hi Smitty, I also had level 1-4 dissection then Tors 1 week later. I want to say I had the drains removed on the 5th day. If I remember correctly, I was just careful while showering. As I was being readied for Tors the surgeon came in and discussed the path report.0
Thanks for sharing that info with me. I’m headed back on the 22nd to discuss the path reports.0
edited December 2022 #20
Drains came out 2 days ago and I received some positive news today from my pathology report. The neck dissection took 31 level 1 - 4 lymph nodes and salivary gland tissue. All negative. Left tonsil biopsy was positive for cancer there. Seeing the Doc tomorrow for next steps. Pretty sure TORS to remove tonsil but not sure what additional therapy. I’m healing well from the neck 9 days ago and eating with some manageable pain. Was able to walk a slow mile today too around the neighborhood.1
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