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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..."
This is the medication that I took for the duration of my radiation to calm me. It didn’t make me sleepy, just calm. I do think though that they recommend you don’t drive. Also when you start chemo make sure you ask for something for nausea. That along with my tongue being sore were the reasons I wouldn’t eat. I lost 85lbs! First time in my life I was happy to be overweight 😂
@buzzltyr57 Bruce, I really appreciate the thorough post you did at the beginning of this discussion! As an active blood cancer patient, with additional health concerns, for me, having everything laid out to me has given me the whole picture. Yes, there may be some changes/modifications along the way, but having the handle on the big scene is comforting. There are fewer surprises, and if there are changes downgrading a treatment, all the better! Often, we cling to what is said, and if/when the team needs to upgrade a decision, our mind runs to, "but you said xxxx, not yyyy, and I'm not ready to accept that!"
Be an involved patient. Take notes, ask questions, write down what you hear. Ask for a social worker to aid you through everything. Don't be reluctant to ask friends/family/faith community for help [it sounds like they are already on board with that!] Graciously accept offers of help. Have you considered writing down your experiences, in a journal form?
Ginger
6 years ago my periodontist referred me to head and neck surgeon because a very small squamous cell carcinoma was found at the base of a tooth in the right lower jaw. The surgeon felt I was too old at 88 years to have extensive surgery, referred me to an excellent radiation oncologist who felt that radiation was too risky because of the possibility of radiatiion necrosis of the jaw. I then saw two medical oncologists who felt that radiation was not too risky and the best treatment for my age. I then called Mayo Clinic in Phoenix to get an opinion of a medical oncologist and they would only let me see a surgeon who recommended 12 hour surgery to completely remove the lower jaw and have a bone transplant from the scapula-a procedure which would require at least 7 hours of surgery under general anesthesia, more than a week in the hospital, and,possibly, a tracheostomy and a feeding tube. The surgeon was insistent and I refused because, as a physician myself, I felt that if I survived I could probably have dementia from the prolonged anesthesia.
A friend of mine from Sloane-Kettering in New York recommended a radiation oncologist in Phoenix who felt that radiation was the best option, who treated me with a month of radiation and has followed up with a series of petscans of the radiatiion site , and, so far there havbe been no symptoms and no evidence of recurrence of the cancer anywhere and there have been no symptoms whatsoever. At 93 + years I am healthy and enjoying life.
The moral of the story is get multiple opinions and if you are in your eighties realize that surgery can be lethal and cause severe dementia from prolonged anesthesia and cause terrible suffering worse than death.
I have been surprised by the Mayo Clinic surgeon's insistence that extensive surgery under prolonged general anesthesia was the only solution.
Hi Colleen,
The phlegm symptoms are still there, but less severe than they were during radiation treatment. I still need to clear my mouth and throat periodically through the night, and of course, sip water every couple hours. I do not sleep without interruptions. Gabapentin seems to help with the sleep.
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Bruce I know you’re probably scared and as a man you’re taught to be tough. Just know that you need to let it out and lean on your family and friends to help you through. Also yes, prayers and God are truly lifesaving. I didn’t have the surgery, but I did have the experience of being in the “cage” Get your oncologist to prescribe a mild muscle relaxer. I tried a few times without them and I didn’t do well. From experience I know you have quite a battle ahead. Just know that there are a lot of us out there and we’re always with you. If you have any questions please feel free to ask me. I was scared because of the uncertainty of it all. Maybe I can give you a little bit more insight. Praying 🙏🏼