Diagnosed today

Hi Debbie and welcome to the forum where you'll find lots of support and advice from people who have had similar treatment.

I'm afraid you've found out the hard way that googling at this stage before you've had any scan results etc can be very unsettling and frightening.  We all know the anxiety of waiting for results and a treatment plan but once you've had a chance to speak to your team in more detail with all the relevant results you really will feel less anxious.

There are many, many of us who have had similar diagnoses and treatments and we are still here to tell the tale.

All the best.

Linda x

I will read all the blogs thank you so much x

Hi Debbie60

I was in the same position as you back in October 2019.  Lymph node positive and awaiting scans etc.  It is the worst time - the waiting.  Hopefully you will get some answers in the next couple of weeks.  It all takes time, but that time is used wisely by the clinical teams to assess your situation and is rarely anything but beneficial to you.

Surgery sounds horrendous but is actually quite manageable if that is the route open to you.  I've had 5 operations so far and recovered well from each of them with few long lasting side effects - none of which are really life limiting.

You've had lots of other advice so I will not repeat that.  Stay with us and ask any questions you feel need answering.

Thank you, have my first scan next week, you’re right it’s the waiting and not knowing. I will stay with this group, you all have made me feel more positive 

Hi Debbie. I am not a triathlete by any stretch of the imagination but I regularly run and cycle and continued to do so right up until wk2 of chemoradiation. I am now back to where I was prior to this episode.

I cannot stress enough how beneficial it is to get/keep as fit as possible through this ordeal. Not only for your recovery but also for your state of mind so keep going! I started off with exactly the same diagnosis as you last August and it is terrifying. Mine turned out to be in my tonsil. (Tonsillar cancer? Wassat?). However orapharyngeal cancers are also one of THE most treatable of cancers so please don’t despair. Just stay off Google, trust your team and keep in contact with people in here who’ve been, or are going, through it. 
Wishing you all the best. M

Thank you so much, this forum is a life saver for me. I am terrified because it’s the unknown, but everyone has been so helpful. Thank you for your input. I will continue to stay as fit as possible. My daughter wanted me to cancel tomorrow’s triathlon, but it gives me something to hang on to. Thank you M

HibDebbie. Keep doing what you usually do as long as you can. I was cycling and didn’t know I had  orapharangeal cancer maybe for months. There may come a time most likely you’ll have to reign it in but carry on for now. Please don’t be terrified take inspiration from us on here if we can do it so can you. Sounds bad but as my oncologist said if you’re going to get cancer this is  one he would want treatment s pretty hard but results are excellent.

Hazel x

RadioactiveRaz said:

Sounds bad but as my oncologist said if you’re going to get cancer this is  one he would want treatment s pretty hard but results are excellent.

Ha! I'd rather have cancer at the end of the little finger of my left hand. I could easily do without that finger 

Ha ha xxx you know what I mean. Lol 

are you bored with footy ? Or have you eaten all your chocolates 

H x

Hi Debbie

I was told in December that cancer cells had been found in my swollen lymph node. My scans showed it was actually in 2 nodes but no sign of the primary. The end of January 21 I had my tonsils removed as I was told typically the cancer starts there but also had lots of biopsies just in case. 
Luckily the primary was in the tonsil so I started chemo radiation 8.3.21.

I am now 9 weeks post treatment and am recovering well. I am off the meds and apart from my energy levels being low I am pain free apart from an ulcer!! I am going back to work next week (part time and working from home).

I remember crying every day for many days when I was at your stage. The not knowing causes much angst but my consultant put it in to perspective and told me that what was known at that stage was that the cancer was the size of a pea. That did help although obviously I was anxious for the scan to confirm that which it did. My was stage 1, caught early with 80% chance of cure and I was HPV positive which as others have said is extremely responsive to treatment.

 I found the advice from those who had gone through the journey reassuring both those who were a few years on and still cancer free and those just a little further ahead whose journey I could use to set my goals (although everyone’s journey is different).

 I will keep everything crossed for you 

Michelle xx