Awaiting full diagnosis

Hi Cat first piece of advise keep off Dr Google please you will only scare yourself driving into the deep end of the Internet. 
I was squamous cell cancer if the tonsil with several affected lymph nodes. The waiting is the worst part honestly once you get a plan things do become clearer. 
We’ve all played the waiting game it’s not pleasant. Stick with us on here. 
Hazel x

Thanks Hazel

Google is only scaring me you are right 

I don't know the best way to play this waiting game I feel physically sick and cannot stop crying

I see a lot of people on here with squamous cell cancer but not the basaloid type, which makes me even more nervous x

Hi Cat You’ve  done the first hard part by going to g p and being referred. The next part like u said us a waiting game put your trust in your team. Once the pet ft scan is done the next stage will be a multi disciplinary team meeting where oncologist surgeon and ent will discuss the next stages. It is horrid not knowing just keep off google the info on there is at least 5 years out of date and mostly unregulated. 
rant on here at us if you want xx

Hi Cat

Hazel has said most of what needs to be said at the moment. Naturally you are quite concerned.  I always say cancer is hardest on partners rather than the patient!

There are a few of us that have Cancer of Unknown Primary and we understand the added strain that put on all concerned mentally. However, as you say we are a rare bread and hopefully they will locate the site and come up with a treatment plan that can target the tumour.  

He should recover quite quickly from the pandendoscopy, but expect a few days of discomfort and tiredness.  It will only be if they biopsy a tonsil that he will really notice the pain.  We can give lots of advice based on experience.

It may be worth asking your consultant what the likely outcomes of treatment are as, although this cancer may be more aggressive, it may respond well to treatment and have similar outcomes to many of us on here.

Best wishes and let us know how the next stage progresses.

Thank you Peter!

I have had some email exchange with the consultant but at the moment he is being evasive, I suppose I would be too until I had done the PET CT and panendoscopy

Like you say it's the 'rare breed' that makes me nervous, the fact that this is likely secondary and already 5cm, along with the basaloid SCC, meaning it's more aggressive. My partner brought this lump up nearly 7 months ago now yet because of COVID this is the time it has taken. It was also mistaken for a cyst under ultrasound and bloods. 

I know I just have to wait the next few weeks and try and keep busy and positive but it's really eating me alive

Cat x

Thank you Hazel, your blog is amazing

It does make me nervous as his neck node has been there for months due to COVID and they thought it a cyst. 

Because of COVID it took 5 months to get diagnosed to ENT, and the delay makes me so scared when its basaloid SCC and so supposedly more aggressive

I'm going to keep off google and try and rant on here, like you say 

Cat x 

Hi Cat Thank you. I wasn’t brave just scared like everyone else. One question to ask is the h p v status after pet ct scans snd any biopsy. Yes kerp well away from dr google I made that mistake early on and got the result if 40 % success rate itcwss only  after speaking f to my lovely oncologist he put me right. I am now over 3 years post radiotherapy. If I look back my limo was probably there in February but I didn’t think anything about it it was July before my treatment started. Try to kerp busy we watched lots of trash tv ( we never watch trashy tv ) but got box sets to distract ourselves.

hugs Hazel

I too found mine through an enlarged lymph node.  Around the same size.  They then spent 18 months looking for the primary - not their fault as a) it was tiny and b) my body kept dealing with the cancer so it "naturally" came and went.  Strange, I know!

I can understand your consultant as he/she wants the best information possible to determine the best treatment pathway.  This waiting time can be torture, but effective planning is key to great treatment and that takes time.

Hi Cat...and a welcome from me. Yes the basaxoid type is rare and more aggressive but the oncologist is on it now. The lymph node is doing its job mopping up the cancer. Hang on in there..I know the waiting g is horrendous but now he's in the system they will move fast to get things done

Hi Dani, 

Thank you. The fact that it is rare and aggressive makes me so worried about what they could potentially find in investigations. I'm so worried that because it's been this long they they'll find something incurable. I know this is an awful way to think but I can't seem to pull myself together.