Hen and neck biopsy results are in.

Robbie Lowery

So, my ENT called yesterdat morning to advise biopsy results came back as hpv positive squarmous cell. He mentioned the number 16 but, I did not think to get clarification on what he meant by 16.

He said it is in the tonsil on left side, same.side as my swollen lymph nodes in neck.

Can anyone give me info on this?

He also advised that the resultz will be sent to Norris Cotton Center and they will call me to say what we do next.

Any help with understanding this would be helpful, as my brain is on overload.

wbcgaruss

Robbie

It looks like they are going to work up a treatment plan for you at the Norris Cotton Cancer Center and I would imagine they will be having you in for a consultation soon.
Have you had a PET Scan yet? Or have they scheduled one?
That is usually the next step or very soon should be.
He may set up Your PET scan or the cancer center may do it.
Now that we know and it is "Verified by a Biopsy" that you are positive for cancer hopefully it is not very extensive.
The designation HPV and 16 are types of the Human papillomavirus thus HPV.
Here is a link that explains it from Healthline  https://www.healthline.com/health/sexually-transmitted-diseases/hpv-types

Here is a link from Johns Hopkins Medicine Head & Neck Cancer Center  https://www.hopkinsmedicine.org/kimmel_cancer_center/cancers_we_treat/head_neck/hpv/faqs.html

I hope this info helps your understanding a bit.

 Wishing You The Best-Take Care-God Bless-Russ

ozymandible

I don't have any information

I don't have any information for you but stay on this site!  Lots of great people and lots of great information.  IMO, the more information you have, the better you can fight this thing.

There is a search function I use a lot.  Anything I'm curious about I type one or more words in and lots of threads will pop up with lots of really good information.

Listen to the people who have been here a long time they are experts because they have been through it.  Some people have really been through it but don't let that scare you-people here do not sugar coat anything.

Sorry to hear your bad news, but welcome to the forum.(Have I been around here long enough to say that?)

Regards, 

Ozy

ProustLover

Welcome

Robbie - Welcome....sorry you need the forum, but glad you found it.  If you can, take someone with you to doctor visits and have them take notes.  This is hugely helpful in the early days when they tell you so much about proposed treatments, and it creates a record you can refer to for years.  We are still referring to notes I took in 2018 when my husband started treatment for SCC HPV + tongue cancer.  Jot down dates and key words that you can look up afterward.  Those appointments fly by and you're probably in a daze.  A note taker other than yourself really  helps...otherwise, it's fine to take your own notes.  Good luck, and welcome again.

wbcgaruss

ProustLover Thanks

So much for that input.
I forget to tell folks the standard stuff we learned the hard way.
ProustLover is absolutely right to take someone along for the second set of ears and to take notes and take lots of them.
Also, video or voice record your meeting if possible to look back on something you may be unsure about.
Lots of apps on phones to voice record and one is, surprise "Voice Recorder" for Android phones.
You will find you are all of a sudden overloaded with info.
Also Robbie please take a look at the Superthread at the top of the H&N page it is loaded with info.
Again thanks ProustLover for the second person to meetings thing you remember the important stuff.

Take Care-God Bless-Russ

 

johnsonbl

As i said before....

If you have to have head and neck cancer, HPV related cancer is the better scenario.  There are multiple variants of HPV that cause head and neck cancer.  HPV-16 is the most common.  Norris Cotton at Dartmouth is exactly where I would recommend you go.  You will have better care and better outcomes from an academic medical center that is NCI designated as a comprehensive cancer center.

You will likely be given the option of doing chemotherapy and radiation together OR having surgery and follow-up radiation.  Both are equally effective.  I chose surgery followed by radiation because I wanted the cancer out of me as soon as possible.  They may also want to do a neck disection to remove some nodes in your neck.  But it could depend on your exact pathology results.  They will walk you through it.  As Russ said, you'll probably get a PET scan at some point as well.  You may need to have some dental work done to prepare for radiation.  Again, they will develop the best plan for you and walk you through it.

I concur with others...you NEED to have someone go with you to your appointments to help you keep track of information and remember what is being said.  When you think of questions after your appointment, write them down so that you can ask at your next one.

Brandon

Robbie Lowery

armana said:

Your Sitauation

Robbie, I hate to welcome you to our new club that you had no disre to join, but , like the rest of us that was not your decision.

Cancer caused by the HPV virus responds much better to radiation.  I joined this club seven years ago and my sitauation was identical to yours except it was the righ tonsil with one lymph node affected.  I opted not to take the chemo and did 6 1/2 weeks of radaition and been cancer free since Nov 2014.

It took me about 5 months to recover from tratment but have no side effect except for a little dry mouth that is very managable.

Good luck to you

Im worrid because i have a  luzter of nodes not just 1

armana

Your Sitauation

Robbie, I hate to welcome you to our new club that you had no disre to join, but , like the rest of us that was not your decision.

Cancer caused by the HPV virus responds much better to radiation.  I joined this club seven years ago and my sitauation was identical to yours except it was the righ tonsil with one lymph node affected.  I opted not to take the chemo and did 6 1/2 weeks of radaition and been cancer free since Nov 2014.

It took me about 5 months to recover from tratment but have no side effect except for a little dry mouth that is very managable.

Good luck to you

armana

Robbie Lowery said:

Im worrid because i have a  luzter of nodes not just 1

No Worries

Most people have more than one node infected, you may want to find out if the infected notes are on both sides of the neck.

wbcgaruss

Robbie Lowery said:

Im worrid because i have a  luzter of nodes not just 1

Robbie There Are

Many on here that have had multiple lymph nodes removed and tested for cancer to make sure they got all the bad ones out.
They have been successfully treated and live on today.
The trick with lymph nodes is to find them and get them out while they are encapsulated meaning the cancer is still encased or enclosed inside the node.
I had one single lymph node only one with cancer and it was not encapsulated meaning it had broken out of the lymph node and was invading the surrounding tissue.
And that created a huge problem for me.
So it is not always the number of lymph nodes there is much to consider in a cancer diagnosis and treatment which your docs will be doing.
They will be evaluating your tests, scans, biopsies, etc, and working up a treatment plan for your specific situation.
Most likely they have a Tumor Board at the Cancer Center you mentioned and will be reviewing your case--

A tumor board is a group of doctors and other health care providers with different specialties that meets regularly at the hospital to discuss cancer cases and share knowledge. The board's goal is to determine the best possible cancer treatment and care plan for an individual patient.

 

Take Care-God Bless-Russ

LitlCJdoll

On the subject of lymph nodes

On the subject of lymph nodes, Robbie, I had bilateral neck dissection, as part of my Glossectomy / Mandibullectomy surgery.

A lot of times, if you have many nodes that appear " pathological", I.E. look suspicious, -- rather than try to biopsy many of them, they will do Neck dissection and remove them.

Part of the reason for this is if those nodes are Gone, whether cancerous or just reactive, then there are less areas for the cancer to spread to. Its Preventative, in those cases. They will remove those nodes which are suspicious, and then test them for malignancy of the Primary cancer, and in my case they tested for Lymphoma as well because I'm susceptible to that cancer.

He removed 55 nodes in my right neck and 25 in my left neck.

Overall, there are 200 lymph nodes in ones neck. There are 600, in the body!  

But again, sometimes if one has a large, invasive tumor as I had then, they will remove suspicious lymph nodes, because they are prime areas for the cancer to spread to, even if not yet. Mine were large and painful in my neck....

We hope your course is easier though, and that minimal surgery required. Radiation treatment is a given though, in our cancer because it can reach those areas where surgery is treacherous or impossible to reach. Radiation will reach the cancer cells.

That's why your PET scan is so important !! It and any concurrent CT scans with Contrast are what Show the areas, and these imaging tools are what guide the surgeon, and also the Radiation Oncologist in where to target the treatment. Otherwise they are flying blind. They must have all the imaging done to set your treatment course.

Robbie, I'm a strange person I guess in that I enjoy my Scans.  I truly do.  I want to know all that's going on and besides, I'm just very curious !

 

Crystal

P.S. on a " down" note, yesterday and all of last night, I have had a severe Adverse reaction to one of my new nebulizer breathing treatments for my pneumonia. They said it was a cardiac reaction, very serious. They asked me why I did not call for an ambulance... I know I should have.  Still having chest pain this afternoon. No more of that drug, for me.

Too stoic for my own good, likely.

LitlCJdoll

SuzJ

Couple of things - mine was

Couple of things - mine was in my throat, but I see people say that it was in the left or right tonsil, so they had that removed. WHY not take your tonsils out?? We don't need them, less chance of spread? Many children and some unlucky adults have them removed earlier in life. I just don't get the "take one" concept

Lymph node involvement is fairly common, I had 14 removed.

 

And yes, record, write, or take someone with you or you'll end up like me - emailing the Dr after because I heard NOTHING after "yes, its curable"

motorcycleguy

Rob,

I'm reading some great advice here. Suz is definitely onto something with the "take someone with you". I personally had an advocate (girlfriend) and she remembered everything - like what pills were for what etc. 

It's more than just a challenge, to stay calm during this - but CJdoll's positive, yet relaxed approach is a major advantage. You're finding out what you're facing, and there will be some treatment, then you'll begin the process of returning to a normal state.

Everyone who is on here has either done that ... or is on their way to doing that.

By finding this site, you'll have the answers that may not be clear from your Oncologist(s) and medical team. The people on here really do care and really do want to help you.

Hang tough - you'll get through this!

MG