Symptoms worsening whilst waiting for biopsy

Hi, unfortunately, there's a process to follow. Like you, I thought it would be spreading rapidly whilst waiting. Mine had also spread to the tonsils and lymph nodes. I never actually got a biopsy in the end, they draw a sample from my lymph nodes with a needle and used that to diagnose, alongside the PEP CT scan. I opted for chem/radio rather than surgery as I would have still need radiotherapy after the surgery and possible chemo too. I was diagnosed in early April Abd my treatment began in June. There was so many appointments it felt like I was always at the hospital. I don't know how much it progressed during the wait or even of it did at all. In December last year I found out the treatment has been successful. I'm clear so far at my 6-weekly check-ups. You will be well looked after and they are doing things behind the scenes. It'll come together all at once.  Please feel free to ask anything, there are no stupid questions. I empathise with your situation. There's a few long waits at the end too. Good luck and keep updating the forum. 

Hi try not to stress there’s a tried and trusted pathway. I had 7 lymph nodes by the time my treatment started and here I am still living a great life 7 years post chemo radiotherapy. We all want treatment to start asap but there’s a lot of planning to be done. If I’m honestly neck lump was there at least 12 weeks before I went to see the gp then took 7 weeks for biopsies, ct scans ,pet ct scans, mri  mask to be made. 

Once you get into the planning side thjngs do move along. Stick with us in here we’re all happy to help.remember head and neck cancers have a 90% cure rate m the treatments hard but the cure rate is very good  Ask for yiur HPV status when yiu see yiur oncologist  

hugs 

Hazel 

My husband found the mass in his neck mid December &  diagnosed 13 Jan (HPV T2L1M0 tonsil, base of tongue & lymph node cancer). Between finding the lump & his chemo radiotherapy starting 2.5 months later on 3rd March the mass in his neck was visibly growing to the naked eye & at an alarming rate to me.

He is now 10 weeks post his 6 weeks chemo radiotherapy & to the naked eye the mass has disappeared & his oncologist when she palpated his neck 2 weeks ago said she couldn't feel anything. Anyhow he has his 3 month scan mid July & we get the results 24 July & she says it is a curable cancer & she is confident the treatment has worked so let's hope so.

So basically as hard as it is waiting for all the tests & all the procedures they need to undertake before  treatment can start, rest assured you are in the process / system now & will be well looked after. The clinicians are so skilled & know what they are doing. Best to you. 

Hi Hazel, still on my journey, up and down, but reading your story inspires and helps me, although days of despair are all too common - not knowing when you know things are wrong, is tough, the waiting makes it unbearable at times.

I know you are an inspiration to many on here - thank you.

Nige

Hi Bumblebee

I too have only recently been diagnosed with base of tongue cancer,even though they have not started the chemo and radiotherapy yet they are having me in and out of hospital for different tests etc at an hours drive there and back its tiring but i know its worth it,they need to set things in place before starting my actual treatment ,ie dentist pet scan , physio etc lol my ultrasound shows a slight swelling in my lymph nodes ,i am going back for another since i got my petscan yesterday to see what else is going on. if he needs to do a biopsy.At least i wont be in for general anaesthetic as i was for the lump.I am carrying on working and my work for East riding are being very supportive so i just ask for the time off and away i go.I am aware that once the radiotherapy/chemo starts i will need to be off but till then this is my way of coping as it can feel overwhelming at times.If i said i am not very scared i would be lying as i am terrified but i am also hopeful as im not ready for the" long sleep" so i will fight tooth and nail and will win :) same as you will ,it will be tough , I have 2 young grandchildren and understand you will feel overwhelmed especially with having a young daughter but the fact you are young and have a little one to be here for you will do well.I have feelings of despair but then concentrate on other things i cant let this cancer take over me i will own and then get rid of the cancer.Be strong xxx

Hi Bumblebee, the waiting for tests, results etc is awful, and it gives us plenty of time to let our mind run wild and imagine the worst possible outcome. Like the others have said it all takes time to be put in order, you will feel better about it all when you know what treatment you will be having. The cure rates for these cancers are very high. 

Ray.

Morning Bumblebee, as so many have already said, it's a process they follow and it takes time. 

My husband was slightly different. They moved fast !! They had to as it was stage 4, loads of pain and massive bleeding. Take a look at my profile if you want further info.

His journey has been difficult and we were terrified. But he has come through it, now making good progress with his recovery even though he had a very poor start. We've just been given the all clear.

Take some comfort from our story, if you can. If they needed to move fast they would. Trust your team, they really do know what they're doing.

It's dreadfully frightening, I know but keep reaching out to people here. There are a lot of people who understand and are here to offer as much help and support as they can.

Chin up, pull up those big girl pants ... weve got your back.

Hugs xxxx

Hello - best wishes to you in your journey , stay strong !

Nige

Hi Bumblebee

I had HPV tonsil cancer which had spread to a node. My neck lump appeared overnight and became very big, very quickly. I’d had a ‘funny’ tonsil for years that my dentist ignored even though I asked about it. But after all the tests, treatment and pathology it was still considered to be early stage T1N1M0. Lymph spread is not necessarily considered as serious an issue as it is for other cancers, particularly HPV.

I’m a year on from surgery and waiting for tests, appointments, results, treatment … becomes the norm. It is really challenging but I just try and focus on things that don’t let me dwell on it because it’s out of my control. 

I am currently very well, super busy at work, travelling, holidays, meeting friends. And waiting for the results of my 1-year PET scan. Trying very hard not to think about it. 

Good luck with everything 

Thank you all for your replies. They mean a lot and give me hope at such a difficult time. It’s hard not to think the worst when you are waiting for the full prognosis.