Shock

Hi and welcome to the group.  Just keep asking the questions and we will do our best to answer you honestly and give you some reassurance.

As to your first set... 

Doctors get a good nose for what they are looking at, shape, location, texture etc.  They also know what is most likely from other things happening around the area of the suspected cancer.  Only a biopsy will really tell the whole story when allied with scans etc.  But I would guess he knows almost certainly from the presentation. 

I think surgery depends very much upon where they actually find the cancer (the lymph node is a secondary and a good indicator of the primary cancer)  Sometimes surgery is the preferred route, but amongst the regulars on here it is probably the less frequent choice.  Mainly the recognised treatment is radiotherapy with (maybe) some chemo.  I've only had surgery, but I am an outlier with my cancer.  The other treatments are my second line of defence should I need them.

In your research stay off Google.  It will frighten you to death and in the majority of cases it shows cancers treated a decade or so ago.  Treatments are so much better and easier now.  That said whatever way your wife goes it will be tough on both of you, but you should both return to a different, but good lifestyle once fully recovered.

If it is HPV positive that is a good sign as that cancer responds slightly better than non HPV cancers to treatment.

The worst phase is the diagnostic phase.  It feels like you wait ages for answers - and you do.  That is because the clinicians like to have everything lined up so they can have a good and honest discussion with you when they have all the results and options.

Make sure you attend with your wife.  Almost all hospitals in England now allow that and welcome the support given.  Write down your questions before you attend and don't be afraid to stop and ask anything of the clinical team.  They love it when they have proper engagement with patients, it actually does make a difference to them.

Get to know your allocated nurse as they will be key to helping you understand what is happening.  Ask them anything - they are abs fab!

In the meantime - ask away on here.  I hope the next stages go well for the pair of you.

Hi K and welcome to the community. Sorry you have found yourself here

Classical presentation of HPV + SCC is a swollen lymph node in the neck. This is a metastasis (or spread) from a primary cancer elsewhere and this is commonly in lymph tissue either in the throat tonsils or the little tonsils you have at the back of the tongue. So the lump in her neck is likely not the only cancer.

I think you have to wait till the scan and biopsy results come through but please rest assured that the oncologist and surgeon will do what's right.

HPV positive oropharyngeal cancer is very radiosensitive and eminently curable.

EDIT.cross posted with Peter.

Absolutely stay off Google. The best place to ask questions is your team and here.

Let us know how you get on

Hi and welcome to the forum where you'll receive lots of support and advice from people who have received similar diagnoses and treatments.

The replies posted by Peter and Dani are both spot on so I won't repeat what has already been said.

In terms of removing the tumour, it often depends on where it's located as to whether this is possible.  My tumour was located on the base of my tongue and was removed by robot but I am on a trial and not all hospitals have the robot.

It really is important that you wait until your wife has had all her tests and received the results as treatment plans will depend on these results.  

I hope the scans go well.

Linda x

Hi and welcome to this group. I only joined last week and the advice is invaluable, I am now staying off google. I presented with a swollen lymph node, and my needle biopsy showed positive for cancer. I was devastated and terrified , and after going on to mr google was convinced that was it. I have listened to all the wonderful people on here and feel better. I won’t deny I have my moments of crying and still being scared, but my scans start next week, and then I know what I will be dealing with, and I have been assured that this will help. I know everyone on here will be supportive and give good advice. Hang in there, and use this forum for truthful answers from people who actually know what they are talking about 

Hi K 

Sorry that you find yourselves here. Having said that, the folks posting on here have become a part of my support team on this journey, they have a wealth of experience and tips. 

I thought the same when I was called by an ENT specialist to say my MRI showed malignant lumps, I guess his experience told him what he was looking at and for that I am grateful. 

Key thing is that you are now in the system, it will feel like a juggernaut at times. Accompany your wife to all the clinics, it's invaluable to have an extra set of ears and mouth, it will also help you understand the stages and support her. My hospital team have been amazing, you will be in safe hands and they really do know what works. Prep yourselves questions ahead of appointments, so you can check they've all been answered, easy to forget things when you are in there. 

Sometimes surgery isn't the first option due to location. I had both, the tonsillectomy dealt with most of my primary cancer, but needed chemoRT for my lymph node and the base of tonsil. 

Take care, Ronnie 

Hi everyone,

my wife had her ultrasound scan today and they then done 2 biopsies using a local anaesthetic. They have said she has at least 3 lumps at level 2 in the neck (not stage 2) around 1cm each and it’s also in the lymph nodes so I confirmed if that meant secondary and she said yes.
she has a CT scan on 2nd July then the specialists will get together and discuss everything and call her back for a meeting to see what can be done

can anyone advice on if this is similar to what they have went through.

The Dr today is saying shes pretty sure it’s Oropharyngeal cancer but they have been wrong before and it’s a small chance it could be lymphoma.

The last Dr said it’s unlikely they would remove it and would do RT but today’s Dr said IF they removed it it would be surgery to remove lumps and lymph nodes then chemo and possibly RT

head is total mince and struggling to take everything in 

Sounds very familiar, only I had ultrasound and CT scan on same day.

• The biopsy should say what type of cancer. They took 3 samples from my lymph node, which showed the origin was my tondils. 

CT scan will help see in more detail where tumours are, therefore help the team decide on the best treatment.

You should be able to go with your wife to the next meeting, even if the letter says not. If you can I strongly recommend you do, for both your sakes. There will be a lot to take in. Don't be overwhelmed by the number of people at that meeting, there were about 10 in mine, all bringing their specialisms to the fight. 

I'm sure there will be much more specific support from the others on here. If either of you have any questions post them in the forum and there will be lots of support. 

Take care! 

Thank you for mentioning about the amount of people in the meeting I assumed the specialists had the meeting then once everything was decided my wife had an appointment with the original Dr. Phew I would of panicked. 

I actually mentioned to my mother in law tonight hat she may want to come to that meeting as well for support as I feel useless bf today o started crying and I don’t want to let her down.

Thanks for all your kind words 

Hi Kerbox. I have never been to an MDT. They do usually meet together because they discuss in detail all the patients they have under review for the whole week. They include surgeons, oncologists, dieticians, speech and language, radiologists, dentists, histoparhologists and nurses. When I got my diagnosis there was my original MaxFac surgeon the oncologist treating me who went through my consent form with me and the CNS allocated to me. 
Goid luck and don’t panic 

Some people with mets to the lymph nodes have both primary and lymph nodes dealt with by chemo radiation. Some have in addition what’s called a neck dissection to remove multiple nodes. It all depends on the topography of the cancer and the clinicians’  judgement. 
I caught my tumour early and had no nodal spread so was treated with radiotherapy only. We are all different. Hang on in there and let us know how it goes. 
2 plus years after treatment I’m sitting in the sunshine in Crickhowell enjoying a break away from home for my wedding anniversary

The sun will shine for you both again. Xx

PS

Oh and level 2 is just an anatomical position