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Just diagnosed with NPC cancer - has anyone else had this?

2 May 2020 12:15

If there is anyone on the board who has gone thru this I would really appreciate hearing from you. Regards Ian.

Just diagnosed with NPC cancer - has anyone else had this?

4 May 2020 09:19 in response to ianwoody

Hi Ian,

I'm sorry to read about your recent diagnosis - I hope you're getting on OK. My reply here will boost your post so if anyone has similar experience then hopefully they'll be along soon. Otherwise, do try searching the forum - searching 'nasopharyngeal' brings up a few discussions so it may be worth taking a look.

Wishing you all the best,

Ben
Cancer Chat Moderator

Just diagnosed with NPC cancer - has anyone else had this?

4 May 2020 18:11 in response to ianwoody

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 

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 00:33 in response to DeborahW

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.

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 10:46 in response to ianwoody

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 

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 11:44 in response to DeborahW

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.

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 12:17 in response to ianwoody

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!

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 13:07 in response to DeborahW

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

Just diagnosed with NPC cancer - has anyone else had this?

5 May 2020 13:23 in response to ianwoody

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

Best wishes 

Deborah 

Just diagnosed with NPC cancer - has anyone else had this?

6 May 2020 02:59 in response to Moderator Ben

Hi BEn how are you. Thanks so much for your advice. Greatly appreciated. Have a great day. Regards Ian.

Just diagnosed with NPC cancer - has anyone else had this?

11 May 2020 21:29 in response to DeborahW

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.

Just diagnosed with NPC cancer - has anyone else had this?

12 May 2020 11:54 in response to ianwoody

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 

Just diagnosed with NPC cancer - has anyone else had this?

12 May 2020 12:24 in response to DeborahW

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.

Just diagnosed with NPC cancer - has anyone else had this?

12 May 2020 12:29 in response to ianwoody

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.

Just diagnosed with NPC cancer - has anyone else had this?

13 May 2020 00:14 in response to DeborahW

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.