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Squamous cell carcinoma (SCC) P16+
Head & Neck Cancer | Last Active: Apr 4 8:21pm | Replies (110)Comment receiving replies
Hello to all,
I’ve been diag’ed with SquamousP16 on back RT side of the tongue and into at least 1 RT lymph node. I’ve had a CT w/contrast and biopsy confirming. I’ve had a PET with no finding other than suspected tongue and Lymph node. I live in 40 miles west of St.Louis and am in the Barnes Jewish Health system and Siteman Cancer Center.
We met with the surgical oncologist yesterday afternoon. He did his exam and thought the lymph node was what he called “mobile” meaning he could move it around – meaning it was not attached or metastasizing to anything as best as he could ascertain until he gets in there.
This is good, obviously as metastasizing is bad. Under general anesthesia, the Surgeon said he would use a robotic method to excise the tongue area and then send it to pathology and wait for margins to be known. This could take up to an hour. If the margins are not clear he will go and take more and do the lab wait all over again. Once margins are clear they will leave it open – no stitches or anything – and let it heal on it’s own. This will be quite uncomfortable for a week or so.
While the surgeon waits for the Path lab results, he will go in and remove the right side lymph nodes from incisions outside, then some stitches and a drain for a few days to a week. That should be fun! I will be in the hospital a minimum of 2 days.
He doesn’t think the left side lymph nodes will need to come out but it’s still a possibility depending on what they see when they get in there and how aggressive the cancer looks under a microscope. Then he says we will wait 4-5 weeks to heal up and go for minimum 25 sessions of radiation. Five days a week for 5 weeks. So estimates the Surgeon.
The Surgeon says he is part of a triad – 1)The medical team (my ENT) - 2) the Surgical Oncology team (himself and his people) and 3) the Radiation/Chemo team – led by and very experienced oncologist at the Siteman Cancer Center here in St. Louis. They all will discuss and make decisions as a team.
So the Surgeon immediately called Siteman and got me in to see the Radiation Oncologist across the street.
We went right over there and spent almost an hour getting exammed and talking over details with the Radiation Oncologist. He felt the lymph node and thought it was NOT as mobile a he would like. He thinks there is a 50/50 chance it has metastasized already. If so, This will most likely necessitate 30-36 sessions of radiation AND 3 doses of chemo spaced out over the 6-7 weeks of Radiation. Plus he will recommend all lymph nodes on both sides be removed, if it has indeed metastasized. We won’t know until we see what’s in there.
Each rad session I will be put into a mask molded to my face and the mask will be fastened to the table so I don’t move. 20 – 30 minutes, do it again 5 days a week, 5-7 weeks. We live about 40 minutes away from the site. I will probably be able to drive until week 3 or 4 but then will need help. Our church and friends are making a schedule and will handle the driving when the time comes.
The prognosis has not changed even if the needs of treatment have increased. It is a 90% success rate. I suspect they’ve known from the beginning what I would need but didn’t want to dump it all at once.
It’s still a Stage 1 cancer – very small and localized – highly treatable but not an easy journey for sure. They say I will have a very sore throat after 10-15 Rad treatments. I will probably lose all or most taste for up to two years.
Due to these two factors, many patients don’t want to eat and that’s BAD. I have to eat and I cannot lose weight on Rad and Chemo. If I don’t eat and lose weight they will put in a GI feeding tube. Nice!
Also, the Rad Onco said I must get cleared at the dentist of any problems before Rad or Chemo. I do that this Tuesday. Fortunately I took care of everything last year and have no issues I know of.
Best guess is surgery will be sked in the next 2 weeks - if Dentist signs off. Then 3-5 weeks and begin RAD/Chemo depending on what they find.
Obviously there are many individual prayer concerns, but….isn’t it wonderful to live during a time when medicine can offer hope? All healing knowledge comes from God and all glory for healing is due Him. But it is an amazing time in many respects.
We are hopeful and optimistic of a complete recovery but it is not guaranteed.
As a Christian with a strong faith in salvation through faith in Christ, I find that I’m not afraid of death as much as pain and suffering. But I’ve suffered enough to know that God gives grace when it’s needed. I can trust Him.
Looking forward to any encouragement I may be able to give and receive.
Bruce
Replies to "Hello to all, I’ve been diag’ed with SquamousP16 on back RT side of the tongue and..."
Hi Bruce @buzzltyr57, welcome to the Connect H&N Cancer group. Your discussion is quite thorough which is to say very good in detail. It looks like you are on the right track including especially the feeding tube which is often overlooked. As annoying as a feeding tube can be, just remember that it too will be gone as well.
I was surprised by the addition of chemotherapy with the P16 result, which seems overly aggressive. I’m not a physician but I would want that treatment aspect justified. It’s uncommon at this stage.
Anyway although this will turn your life upside down, remember that tough times never last but tough people do. As most of us have experienced, this adventure will have some profound impacts on your life and often for the better. Hugs to you. And you know God is with you too.
Hi Bruce,
I am a born again Christian as well. Praise God for your faith. I just finished 28 sessions of radiation therapy for larynx cancer. I just saw my surgeon and the tumor is gone. We follow up in January.
I can speak to the radiation treatments. Being bolted to the table was not that bad for me. I basically practiced deep breathing techniques to get through it. About the middle of the third week I started getting a sore throat. By the fourth week, I was eating soft foods and liquids. My wife made me some delicious purées of chicken stew and pot roast, which kept me going.
I had to drive about 40 minutes to my appointments as well. I was able to drive myself the entire time.
What helped me stay strong was getting to the gym regularly and to keep moving. Try to stay as active as you can
I will be praying for you brother.
Ray
I had 3/4 of my tongue removed, double neck dissection, then 6 weeks of radiation and chemo. It was all very tolerable, but the last half of the radiation was uncomfortable. The worst part was the ropey phlegm that made it hard to sleep. The trick to not losing weight is to drink the 530 calorie Boosts that you can order on Amazon by the case. I have been drinking a case a week for the last year and still enjoy them. God bless! You got this!
Thanks Mike! I'm from MN as well. Left in 2009 when NWA merged with Delta. Finished my career in Georgia, then retired in 2012 and ended up in Missouri. It's quite nice here in the Missouri River bluff country. Everything MN was without the cold, the snow, or the mosquitos. But I do miss the lakes. Thanks for your story and the tip on the Boosts. I suspected I would be drinking something like that. Good to know the 530s do the job!.
Be blessed
Bruce
I had almost the exact diagnosis in March this year. I had no surgery but underwent 35 sessions of radiation and weekly chemo. 7 weeks total. The pain does get progressively worse and by week 7 and the next month or so after that it is no fun. I lost 40 lbs. I did not get a feeding tube and am not sure I I should have. Liquid Boost was my diet for some time.
I am 5 months out now and can tell you there is light at the end of this treatment. I can tasted, my diet is normalizing and I am still able to work.
I am still gaining strength. I am able to work. I do not enjoy eating as much as pre cancer treatment and I don’t sleep like I used to. All that said I am so much better in just 5 months. I think your 2 years to normal estimate is probably a good one. Still it’s not terrible. I have my 2nd scan next month a believe that I am cancer free.
Bruce, Excellent description of your diagnosis. I just went through this exactly. (April 13, 2023) I had TORS surgery to remove base of tongue tumor ( negative margins during surgery). The lymph nodes on one side of Neck were remove and sent off to Pathology. I was considered State 2/ minor Stage 3. ( June 1, 2023) I had 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. Also, There are tons of Youtube videos on the subject. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Today 2.5 months out of radiation treatment. I can eat and drink about anything I wish. However I still have no appetite or taste much at all. During Treatment I was eating very soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost,Shakes, soups, etc. My taste buds are about 20% and seem to be coming back some. My mucositis has just about gone away and My saliva production is slowly getting better. My hair has stopped falling out. Beard hair I lost has not returned. Mouth Sores and Neck skin burns healed within weeks of final treatment. My stamina is back to about 80% but Some days only 60%. Head and Neck Radiation is a real tough deal. If I where you I would research Proton VS Photon Radiation and side effects. I my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is much cheaper. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. I see you have faith in God which is why I am typing today. I firmly believe it you have faith the Good Lord will get you through anything..Good luck to you. You can and will make it!
Thanks , Dave. I will definitely ask those questions. I want to ask the one about the node being close to the carotid too. Thank you for your kind encouragement! Jesus truly is ever present and never leaves us.
blessings
Diagnosed sep 18 P16+ SCC
Still trying to understand how. Have had CT and biopsy confirmed biopsy was from the lymph node on left side of neck. (Does this mean stage 4?) had PET last Thursday afternoon waiting on result. Am I waiting to long? Any advise?
Agree with Buzzltyr57 in the post above. The stage will be determine by tumor size, How many lymph nodes involved, If tumor is " midline" location in the mouth/ tongue they may want to treat both sides of the neck. The PET scan is excellent for showing where the cancer is as it will almost glow. Alot of good threads on this website. Good luck to you my friend. It is a very winnable but tough battle.
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Sounds like you’re in good hands. It’s not going to be easy but you will get through it and come out on the other side cancer free❤️