Hi Ian, 

I am so sorry to hear about your diagnosis. I am currently waiting biopsy results for NPC and would like to hear about your journey so far. This is an incredibly difficult time to receive such news and I hope your are managing ok. Best wishes Deborah 

Hi Deborah how are you. Thanks for reading my post. I wish you only good news ahead. I started out with cold and flu symptoms that originally went away with antibiotics. Then a month or so ago I went to see ENT specialist for a biopsy. He couldn't get a biopsy tissue from one side as the nostril was very narrow due to the bone cartilage not being straight. He tried hard under local anesthetiser but could only get dead tissue. I had ct and mri scans but nothing conclusive. Blood tests were normal. I have visited ENT specialists who say I have NPC and oncology specialist who say different. I'm waiting for the operation to clean out my nasel passages and to try and get a biopsy tissue. The ENT specialist wants to clean up all the dead tissue and do a skin graft to repair inside. I gotta say Deborah I feel very down with headaches, mucus discharge and a sore throat and can't wait to get started on the treatments whatever they may be. I feel like I have a hangover everyday. Thanks for listening Deborah.

Hi Ian, thank you for getting back to me and your well wishes. I really appreciate it as I know it's important to connect with people who have things in common and I hope we can maybe help each other through the journey of the unknown ahead.

I too like you had regular visits to the doctor with sinus infections and treatment with antibiotics aswel as longer than normal recovery times from cold and flu. I totally relate to the headaches,  what I believe to be congestion in my sinuses and have often described this as waking up with a hangover every day and they are the bain if my life. 

Recently I was referred to an ENT clinic and had an nasoendoscopy with no diagnosis, then sent for CT scan, which showed my sinuses and nasal passages were all clear, but my adenoids have grown back which is unusual in adults (removed age 8) and the specialist at the time also said there is some erosion of the bone surrounding the adenoid tissue. I was sent urgently for a full examination under general anaesthetic with a biopsy of my adenoid tissue.  This was carried out on the 28th Apr and the pathologist said he would call me within 2 weeks with a diagnosis but maybe sooner as they are so quiet just now since everything outwith covid19 has been put on hold. During my recovery I have caught an infection which has resulted in very bad breath (and I mean rancid) which has been quite unpleasant especially or my partner and 8 year old daughter who suggested the smell was from the farmer spraying the fields

Along with these symptoms I generally feel very unwell all the time and since new year I have fainted, been on antibiotics twice for a urine infection and have been up during the night with sickness which is all adding to the worry of the probable cause. I feel so fatigued too and sleep apnea is definitely a coexisting problem. I could go on forever with many related symptoms lol.

I have prepared myself for bad news and I know you just dont know these things for certain until you are told by a professional but I have a very strong feeling that I am very unwell for good reason.  I just want go get to the bottom of it and find a way to recovery.

If you have any questions about the biopsy then fire away. What date are you booked in?

Best wishes to you Ian.

From Deborah 

Hi Deborah, thanks so much for sharing. I really appreciate your comments and can relate to them 100%. I have the invasion of the bone and one oncologist said it was cancer of the Clivus bone. My problem is that I need the biopsy and cannot have that until I'm put into hospital and under anesthetiser. Your a great help Deborah and did the biology cause much discomfort. I bet you can't wait for the biopsy results. I can't wait to get into hospital. Please stay in touch and I will do likewise. Good luck buddy.

Yeah I really feel for you and I can't believe one specialist is confirming diagnosis yet another is saying there is none?! That's really bad practice. Usually a diagnosis wouldn't be confirmed to the patient until all the healthcare specialists involved in your treatment plan have agreed on the results and how your treatment should go ahead.

I was told by the ENT specialist that the biopsy would be an invasive procedure with recovery period of two weeks.  I was sent to a private (BMI) hospital, an hours drive from home where I was very well looked after. I totally underestimated how much pain I would be in afterwards and had no solid food for the first 4 days. Fortunately, I have a good blender and love home made smoothies. Recovery from the general anaesthetic also took a lot longer than I had hoped and I wasnt steady on my feet for a few days either. I felt dizzy all the time but everyone reacts to anaesthetic differently and my experience may also be due to the infection I had.

Please keep in touch and let me know when your appointment is.

Take care and I wish you all the best!

Thanks so much Deborah for the advice. I will keep you posted. Take care of yourself mate. Best regards Ian.

You're welcome Ian. Contact me anytime. Take care and good luck.

Best wishes 

Deborah 

Hi Deborah how are you. Any news yet on your biopsy. Praying with you. I'm still at home waiting for the hospital to call. Take care and I will keep you posted. Regards Ian.

Hi Ian,

Thank you. No news yet unfortunately. I feel like I've been to hell and back these last two weeks.

I phoned my consultant's secretary yesterday to try and find out when I would be contacted. I was already nervous phoning and she couldn't have been more rude if she tried. Initially, by answering the phone saying 'hello' which caught me off guard and it just went downhill from there. I can't justify that type of attitude even in the current circumstances. The end of the conversation went like this "your results are in his basket so he'll phone you on Wednesday ok bye" then hung up.

Have you had any news about an appointment for your surgery/biopsy yet?

Best wishes 

Deborah 

So sorry to hear that. No compassion at all. Don't upset yourself any more. Just wish for the best news and find out how to fix your problem. I don't have a schedule yet which is playing with my mind and health. I hate being in pain. I'm sure I will get an answer this week. Take care Deborah. Chat soon.

Yeah I didn't dwell on it as it's pointless as you say.

I hope your not waiting too much longer now. Being in pain and in limbo for a way forward is a hard place to find yourself in just now.

Keep me posted.

Take care.

Thanks so much Deborah. Being in limbo is worse as you know. Just look forward to speaking with your Dr. take care and chat soon. Sweet dreams. Regards Ian.

Thanks so much Deborah. Being in limbo is worse as you know. Just look forward to speaking with your Dr. take care and chat soon. Sweet dreams. Regards Ian.

Good morning Deborah how are you. Any news. I got a call from the hospital yesterday and I will go to hospital next Monday. Good news. I will have corona virus checks and ct before they confirm the surgery day. You hang tough Deborah and thanks for your support. Regards Ian.

Good morning Deborah how are you feeling. What's the latest. I had the operation to clean the dead tissue from behind my nose in order to find some healthy tissue to get a biopsy done. I get the results next Thursday the 4th of June. Trust your ok buddy.

Hello can I join this post? I'm Lynn, 46 and finished treatment for NPC in Feb. Please do ask if you have any questions, I'm happy to help (we are few and far between, there isn't many of us!)

So glad you joined Lynn as I'm nervous about the skull base surgery. What stage was your cancer. Surgery is more common because of the cancer location behind the nose rather than radiotherapy. How are you feeling following your treatment Lynn. So happy for you to share Lynn. Regards Ian. 

Lynn any advice or suggestions would be greatly appreciated.

I was diagnosed Stage 4 with localised spreading (no distant spreading or lymph nodes included) No surgery as no clear margins. Mine grew upwards into nasal cavity, eye orbit and skull base.

I had 6 rounds of Cisplatin and Eptopiside followed by 33 radiotherapy treatments, higher than tolerance in some areas 

I finished treatment at the end of January and it's been a rough slog, still very unwell but slowly getting there. Are you in the UK? I ask this question because radiotherapy would always be the treatment of choice so I'm told.  My consultant always said it would be the thing that would affect my tumour the most.

Andvit certainly did. My first clear scan after the 3 month post  treatment wait was clear!

Any questions ask away!

Thanks so much for sharing Lynn. I understand you have been thru so much. Keep up the fight you are an inspiration. Lynn my NPC was detected by the ct scan and then pet scan. The pet scan showed no further spreading at this stage. I'm not in the UK at present but I have been advised that surgery is the safest treatment for me. I'm waiting for the biopsy results on June 4th. Lynn stay strong ok. Was surgery an option for you. From the research I have see the cancer grows around and then down. I'm so glad to also hear that the 3 moth scan was clear. Thanks so much for wanting to chat and share with me. Regards Ian.

I'll be thinking of you on Thursday when you get your results.  Good luck and let us know how it goes

Thanks so much Lyn. How are you feeling. I hope you get back your feelings soon. How are your eating habits. May I ask how you were diagnosed with npc. Were you told the possible causes. Excuse me for asking so many questions. Lyn please take care and stay strong. Regards Ian.

I had a biopsy done up through my nose and it was very painful, just local anaesthetic. I then waited a week for the results and started chemotherapy 4 days later 

I am tired a lot, the fatigue has been difficult. I am beginning to eat more but have a very dry mouth which is helped by a prescribed spray. I have bad neuropathy in my feet, on medication to help. No cause given just 'one of those things '