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 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.
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?
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.
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.
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.
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!
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.
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 '
Hi Lyn, thanks so much for sharing your experience with me. I'm glad you are starting to eat better. Trust you have family and friends around to help you get thru this. I will contact you after I get my biopsy results. I couldn't get the biopsy up through my nose because there was only dead tissue. Therefore I was put to sleep and a lot of dead tissue was cleaned away before we could get some suitable tissue for the biopsy. Lyn take care and chat soon. Regards Ian.
Hi Lyn how are. Trust your feeling better and you are eating and living better. I'm thinking of your discomfort and hope it gets better soon. Regards ian
Hi Lyn. I got the biopsy back and it was inconclusive. They now believe it could be lymphoma so I need to go for bone marrow extraction to confirm. It's a process that we must go thru. Fingers crossed.
