New cancer 2 months after TORS Surgery chemo+radiation

My husband's was also HPV. I wish we had talked to radiologist first but we were scared and overwhelmed and thought there was more urgency to remove it. It might have spared him the dysphasia. Thankfully the 18 lymph nodes were negative. But the morning he awoke after surgery he could not swallow, so has been on a feeding tube since. We have been working with speech therapist since February 1 and we see very slight progress. This will probably backslide once radiation starts. Even after the surgery, before they found the cancer was still there when a catscan was done for pneumonia diagnosis, he was mowing the yard, doing his woodworking, etc. My hope is that he will one day be able to swallow again, but if not, to at least be able to do some of the things he once enjoys. This has put a new dynamic on our relationship. We've never been apart for more than a couple of weeks at a time, but once I get him home from rehab, if either of us has to have this kind of care, it will be in our home. We are both apprehensive and terrified of what's to come...the great unknown. It's so hard to stay positive for each other but we must!!

I was diagnosed with tonsil cancer back in February. SCC HPV16 pos. Tors was not recommended because of deep tumor behind tonsil and very hard to get to.
I’m on my 27th radiation treatment and third chemo ( cisplatin was not an option as I have severe hearing loss)
So I have 8 more Rad and 1 more Chemo left. I’m a 75 year old healthy male and nevertheless I’m getting the crap kicked out of me. The pain meds do help. Dr is telling me 6 weeks after last treatment I’ll be at 50%
Right now no sense of taste at all and very little smell. Hurts like hell to swallow and am going to speech - swallow therapist that seems to help.
To think 3 months ago I was golfing 3 times a week, riding my motorcycle all over the country and just enjoying retirement!

I am not a doctor but this was my experience. I was diagnosed with HPV16+ OSCC base of tongue/neck in March 2023 at 56 years old. I had an option of Radiation/ Chemo or TORS surgery. In the end I just wanted it gone and cut out so I elected the TORS surgery. I have since learned that this type of cancer is very treatable and successful with radiation/chemo together. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed as cancer had spread to a couple of lymph nodes and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I completed 30 rounds of Proton Radiation in July to "cleanup" and cancer that may have been left behind. I had NO chemo so I cannot speak for the effects. As far as the radiation it will be very difficult for him to eat/swallow. ALOT of radiation head and neck patients go on a feeding tube during treatment and then get winged off months after . The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) due to mouth pain and sores. I would suggest to start doing mouth, tongue and swallowing exercises today. A Speech therapist can help you with this. The pain is fairly severe for several weeks in treatment. Think soft foods and Boost drinks. I had pain medications which helped tremendously. As of today I would say I am about 90% back to normal . It is a SLOW climb back and you will never be quite "normal" again but you will be alive. CT scans and throat scope every 3 months for a year or two to monitor any recurrence. Ask the doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored. Good luck and Have Faith. It will be a journey for sure but He can do it! Stay positive.

@phyllisg, I'm sorry to hear that the cancer is back. It sounds, however, like the pneumonia and need for an unanticipated scan might have detected the cancer sooner than it would have been found by routine followup.

I'm tagging a few fellow members who have experience with HPV positive SCC, like @jersey3422 @stephenrfleury @goffrey @thebgyn123 @mojo244 @fwpoole @ascc17 @alpaca @jonesja @davehutsell @dennymayo to name a few. Some also have experience with TORs surgery followed by chemo + radiation treatment.

Your husband's good health from 6 months ago will serve him well. It sounds like the pneumonia and recent health challenges have knocked the stuffing out of him, but I'm confident working with a PT will be really helpful. When does he start PT rehab? How are holding up with this news and caregiving?