NEED GUIDANCE AND SUPPORT

LeonardWalker

I am reaching out to you because I am a recent patient of P16.  My radiologist stated my condition is worse than most.  He expressed the average level of lymph nodes with P16 cancer infected if 5 to 8. I had 22 lymph nodes with cancer.  This means my radiation treatment was 3x (according to them) more inserted = more precise and more application of radiation.

The complications is that my round of radiation (37 treatments) ended in November 2023.  Here it is November 2024, and I am still dependent on a feeding tube.  My swallowing isn’t improving, it plateaued.  Related, they have found additional spots after 6 months ago when they said I was in remission, located in my lungs.  Somewhat unrelated to what I am asking. Is there any specialists, groups, anyone that understands my condition and provide some insight on next steps?  How can I improve my swallowing?  What can I do medically and/or holistically to improve my situation? 

Being a cardboard image of myself, I fear the my condition not improving is creating a pathway to death.  Any resources, sources, and/or expert authorities provided would be greatly appreciated.

Sincerely,

wbcgaruss

LeonardWalker Welcome to the CSN Head and Neck discussion forum.

I am sorry you are having some issues post-treatment and till see if we can help in any way.

First off the term P16 cancer is not familiar to me.

When I looked it up I found it is a Tumor Suppressor Gene, very technical explanations were found such as in the link I will put below and we are getting to the Gene level of our body makeup which is not usually used in these forum discussions but maybe you can verify one way or another.

P16 link...

https://pubmed.ncbi.nlm.nih.gov/9508208/

You may be referring to what they call HPV 16 which is  human papillomavirus (HPV) and can be HPV 16 plus or minus of which the HPV plus is considered to have the best outcomes of treatment. So let us know if your doctor is referring to P16 or HPV 16.

HPV 16 link...

https://www.cancercenter.com/cancer-types/head-and-neck-cancer/types/hpv-related-cancers

Next, I can not say if 22 lymph nodes with cancer is out of the ordinary as far as how often that number is seen in a patient but I can believe 5-8 is the average. Obviously when we are talking cancer less is better for sure.

And you had radiation for the 22 affected lymph nodes?

Did you have surgery?

When lymph nodes are affected in a cancer situation many times they will perform what is called a radical neck Dissection to remove any suspected lymph nodes. I have read on this and other forums and medical articles of much higher number of lymph nodes being removed than the amount you had. Below are a couple of snippets from this forum referring to such situations of higher numbers removed...

"I had a neck dissection to remove 41 lymph nodes in July followed by robotic surgery to remove my tumor along with my left tonsil and a retropharyngeal lymph node in the back of my mouth. ..."

"Stage 2; HPV and P16 negative, All biopsied areas (surrounding 50 lymph nodes, left tonsil and BOT) negative for cancer. Only area that "lit up" in PET sca was lymph node before tumor was removed...."

Many times when lymph nodes are cancerous they will operate and do follow-up radiation as a mop-up to clear any missed cancer down to the unobservable cell level.

Did you have cancer in another area of the head and neck and it went to the lymph nodes or was it cancer in your lymph nodes only?

Did they give you a staging of your cancer?

https://www.cancer.gov/about-cancer/diagnosis-staging/staging

I am sorry that you still cannot swallow yet a year out and I am sure it is quite distressing to you. I would say it is not what is hoped for when we get treatment however they can make no guarantees as to a timeline for swallowing considering every case of cancer is different depending on location and modality of treatments. Just to let you know it is not completely unusual for someone to be on a feeding tube for up to and over a year depending on that particular case, and this is just to let you know others have gone through this and eventually eaten later it was just delayed longer than others.

I assume your care team is well aware of this situation, what is their evaluation of it, are they recommending anything?

You should be working with a Speech Therapist which is all things H&N such as swallowing, breathing, talking, saliva, etc. Do they have you doing swallowing exercises? Link below...

Swallowing and Speech Rehabilitation for Head and Neck Cancer

https://www.youtube.com/watch?v=uhwFg8oyGMY

I think you should definitely have a Swallow Test if you already did no have one. Link Below...

What happens during a swallow test?

https://www.youtube.com/watch?v=dRvYL_TAtKI

Below is an animation of the anatomy of swallowing...

Anatomy & Physiology of Swallowing -- MBSImP Animations

https://www.youtube.com/watch?v=SBbNxM7g2vg

Are you in remission?

Usually post-treatment 3 or 4 months out we are given CT Scans of the area of the cancer to monitor and make sure there is no cancer and given again in 6 months to a year up to 5 years as follow-up treatment.

Did they tell you what they thought the spots on your lungs were and have they biopsied them?

Just to let you know if you have cancer in the head and neck area or the lymph nodes if any metastasis shows up later on it is usually in the lungs.

That is usually the next place it goes.

So make sure to follow up on these lung spots, it doesn't mean cancer, there are many things that cause spots or nodules on the lungs but you want to be sure.

That is why all H&N patients should have a chest CT every year for the rest of their lives.

My situation involves a CT Scan with contrast of the H&N area and chest each year.

I think some doctors consider x-rays to be good enough.

In closing for now I would recommend getting with you care team if you have confidence in them and going over everything you mentioned here. Take some of the questions I asked you along. Everything talked about here you and your team should be in contact and actively working on resolving all these issues to bring your case to full recovery and "remission of cancer".

On this forum we call it NED (No Evidence Of Disease) or as some doctors like to call a clear scan "Unremarkable"

Unremarkable-Amost wonderful Word For Cancer Patients-The Results Of A Clear Scan

What does unremarkable mean medically?

Unremarkablemeaning describes the report as normal, which means that there is nothing to report. Nevertheless, it's a very powerful word used by radiologists that is helpful for medical experts. In the case of unremarkable meaning, there is nothing to worry about. It reflects that the patient is fine.

If you don't favor your care team I recommend you get a second opinion on all this from a Major Cancer Institute or Cancer Center in your area or Major Hospital in your area that treats cancer.

If you don't have any of these in your area then you may have to travel a bit but well worth it to be sure your cancer is eradicated.

Please stop being a cardboard image and get proactive in your care, follow up, make a plan, and resolve this. Ask questions until you get satisfactory answers. Always take a notepad with you to meetings; you can't remember everything you should. If you have questions, have everything written down and take it to your meeting with your doctors; you cannot remember all your questions either. Take a smart phone and record the meetings visually or at least the audio to refer back to if need be. If possible take a friend or relative along with you, two sets of ears are better than one.

I hope something I have tried to relate to you here has helped in some small way.

Our Motto here is (NEGU) Never Ever Give Up.

Wishing You The Very Best

Take Care, God Bless,

Russ

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

Logan51

Sorry to hear about your ordeal. I was unknown Primary, which means early, but they didn't have an area to focus the Rads on so they blasted me in 20 places/session. Most greys, 68, were to the bottom half of the throat and aced the top 1/3 of my esophagus and larynx folds. That said, I'm over 15-1/2 years out, have been FT-dependent the last 5 years and 3 months, and have had no recurrence. THERE ARE SWALLOWING Specialists with Hospital Systems in their Physical Therapy Department. Also, you might be a candidate for an esophagus dilation- where they stretch open the esophagus, though that only lasts a while before needs to be done again.