Test for HPV and cryoablation for tonsils

Welcome dshannon15 to the Head and Neck Cancer group. Those are words you probably never looked forward to hear.
Could you tell me if you know the type of cancer discovered and where such as Squamous Cell on the Cheek for example?
As for HPV testing, this is done with a small sample from the area and rather easily tested. HPV connection was only discovered a little over 20 years ago and about 10 years ago we knew the treatment for HPV+ Squamous Cell could be less evasive than for non- HPV type.
As for Cryoablation treatment, from what I have read and experienced ( I am not a physician), this treatment seems to be only temporary in many cases. It is an easy and quick approach but not always permanent.
Let’s see what others have to say. In the meantime see an oncologist and get to know your enemy (cancer).

William,
Wow, there are no words to express how the comfort your reply (my first on this amazing support resource) brought to me so THANK YOU and thanks to whoever’s brilliant idea it was for Mayo to start Connect.

First my friend has seen a variety of oncologists but as he’s ready to throw in the towel and not seek any kind of treatment, nor even a 2nd opinion, he is not being very forthcoming with the specifics so I don’t know if cheek or squamous. His best friend is meeting with him today to encourage him to fight this but of course it’s his choice to make.

I am merely trying to learn as much as I can (in a hurry) in order to provide enough hope that he will, at least agree to request a 2nd opinion.
We’re hoping that he will agree to share all his records so 1) we can pursue a 2nd opinion at Univ of Chicago, which I’ve successfully used before with others. I’m also checking to see if MD Andersen, Sloan Kettering or Mayo offers a similar quick and reasonably priced (under$1,500) 2nd opinion.

I’ll also be exploring whether one of these 4 hospitals is doing more specialized research/trials specific to my friends which has been found in one tonsil and one lymph node by his doctors at Kansas University Cancer Center, who, I presume are giving my friend the reality that there is not much they can do to extend his life beyond 5 years for 50% of those in his condition.

The reason I asked about testing is because he was told (this is all second hand) that he can’t determine whether he has HPV or non-HPV but they are assuming that given a lifestyle of smoking (more than 10 packs a year) and drinking, that he is likely non-HPV.

He’s been advised that surgery is “too dangerous” given the location or cancerous cells.
After being advised of the numerous downsides of the typical warranted regiment of radiation and chemo ( lost of taste, physical and mental challenges, etc.) I can understand why he is opting to just enjoy the few years he has left without going through all of that.

As a friend (who’s out of state) I, also with his best friend, are merely trying to give him more information (including at least one 2nd opinion from one of these best cancer hospitals ) to make an informed decision.

While I don’t see him agreeing to participating, this includes investigating any clinical trials that might be applicable or other innovative treatments that might provide some hope. To that end in minutes I am about to head over to the Crerar Medical library at Univ of Chicago to spend the day exploring. I’ve had some success using this resource before including an positive outcome of 100% cancer free for another friend with bladder cancer.

Sorry this is so long but I’m hoping that you or others reading this will be able to give me candid feedback, direction as I devote my day to help bring some hope or if not, peace of mind about his best path forward. I also plan to uncover more great sites like SPOHNC which, in addition to provide a nice overview for a layman like me, could be helpful to his wife/caregiver. In the end, I’m just trying to help in any way I can as he would do for me if the tables were turned.

Thanks again

This is my story and what my husband and I have experienced. Hopefully it will be helpful.
My husband was diagnosed with Squamous Cell carcinoma in one tonsil and it mastitized to his lymph nodes. With the help of his dr where we live my husband was directed to interview with an Oncologist who specializes in ENT cancers. This Dr has a study program through the University of Indiana in Indianapolis at IU Health. The study is a two year program in which if you sign up for you need to be present for surgery as well as radiation treatment.
The study using robotic surgery and depending on how many lymph nodes are cancerous will determine how much radiation without chemo is necessary. The goal is to be able to treat the cancer with less invasive methods and less radiation for short term side effects.
We live two hours from Indianapolis so it was going to be a challenge for us. With the help from IU Health and the study we were able to secure housing for the 5 and half weeks we needed to be there for treatment without any cost to us. We are home now and on the mend. It’s been a trial as his side effects had more to due with nausea rather than pain in the throat as a result he was not eating well. The team at IU Health have been phenomenal at attending to his needs and every step of the way to help him with side effects.
Everyone is different and treatment options are also different depending on the circumstances. I hope this is helpful.

Diamond 1,

I'm actually typing this from the Univ of Chicago Crerar Medical Library where I've been this afternoon exploring Robotic solution and after watching the 30 minute video about their Head/Neck Cancer program I came away with some optimism for my friends situation. I just requested and appointment as I sent all my findings to him and I think this new information is going to convince him to get a 2nd opinion at UofC. They also have a clinical trial available that also seems a great option.

with that said, I found your reply/situation super helpful, relevant and also encourging. Can you please provide contact info at doctors at IU. Two of my kids graduated from UI from Kelley School of Business. Love B-town. thanks again

Is there an easy way to forward this chat history to my friend without cutting/pasting ?

I’m not certain about forwarding this as the Connect forum is protected.
The doctor who performed the surgery is Dr. Michael Sim. He’s just amazing and right from the get go we felt we were in the right place at the right time.

@dshannon15, you can send your friend this link for him to see this discussion:
https://connect.mayoclinic.org/discussion/test-for-hpv-and-cryoablation-for-tonsils/

Thanks

I’m 6.5 years out from stage IV .
I didn’t waste time with getting a second opinion because I had been misdiagnosed by a family doctor and an ENT TWICE!
Anyway with that aside; I did ask my oncologist about some more modern methods and his reply was “they don’t work!”
I took him as knowing what he was talking about and trusted his judgement.
I underwent the typical 35 radiation and 3 rounds of Cisplatin.
I had too much cancer and surgery wasn’t an option!
Now, let’s touch on this “5 year” life thing.
I too found information that the survival rate was 5 years.
I asked my oncologist about that and here was the answer;
“The reason it’s 5 years is because the patient will only see the oncologist for 5 years after treatment unless a problem develops”.
He went on to explain that the survival is simply the 5 years post treatment office visits and after that, no further documentation is penned.
His advice was to stay off the internet searches and trust that the treatments will kill the cancer!
So that’s what I did and I’m still here.
Hope this helps,

MOJO

Thanks to all of you who replied and for the Connect program which I have told several friends about. I think it is an amazing resource and I am super grateful to have found it.
I am saddened to report that my friend replied that while he appreciated my efforts to help him he has firmly ask that I not send him any more information: “ Again, I appreciate it all but would appreciate it more if you did not expend this time and energy on my behalf”.

While I don’t regret having done this research including attending a symposium on oral cancer treatment here in Chicago that was coincidentally headed by a new tenant of mine (I manage a medical office building in Chicago), this response did take the wind out of my sails and caused me to recoil a bit with the thought that my good intentions may have crossed the line into my friends personal space. At this point I feel that I’ve done what God put in my heart to do and He will take it from here.
If nothing else, I believe my uncovering this Mayo Connect support resource will definitely provide a magnificent resource for many other friends and family who finds themselves in similar situations. Thanks again all of you for extending your heart to me and my friend. Take care and take it one day at a time. May God Bless all of you.