Hello Smokie1756,

A big welcome to Cancer Chat and thanks to sharing your inspiring survivor story. Congratulations on being tumour free! I did a little search on the site and actually found just one person on Cancer Chat who back in January was about to start treatment and was looking to talk to someone who had had nasopharangeal cancer but unfortunately as it is a rare cancer, nobody responded at the time. Feel free to respond to this user - you can find spirit's thread here.

I will now let others come along and say hello to you!

Best wishes,

Lucie, Cancer Chat Moderator

Hi Ron

Lovely to read such positive news. Everyone on the forum will  be lifted by your post. Hope you manage to link up with the thread the moderator has given you. Jules54

Hello Jules,

How are u?? Im sure u must be a survivor too.

I have posted a message to Spirit but she has not been back in contact. I hope shes okay.

Hear from you soon

Ron

Hello Wafita,

First of all sorry that we are chatting as you are suffering from nasop cancer. Its a very insidious cancer that sneaks up on you as there are no normal side effects till its too late.

In 93 I had my ears cleaned as they were blocked and nasopharanx cleaned as thats where your ears drain to. I was still under hospital in Dec 94 as was having check ups as grommets were still in. I told registrar I saw that I had lumps in my neck and he checked them and said it would be an infection. In March 95 I was back again for another check up and told him again they were still there so he checked them again and said could be a bacterial infection and noted it in my notes again.

On April 13th 95 I went to my docs about them and throat and ear infection and he gave me Cephalexin, the Rolls Royce of antibiotics he said. 10 days later I was back throat and ear infection cured but still the lumps were there. Then it was X Ray as I was a smoker and got chest x rayed but 5 days later I was told no probs with x rays. Then I went back and got a blood test when I went back and these were clear too. I went back to my docs and he said to me that I needed tests he couldnt do and I needed to see someone. He knew what I knew and I knew what he knew as the lumps were still there and growing. I saw a senior SHO 2 weeks later who was cardiothoracic as they suspected lung cancer. He got a pathologist to do needle aspiration of lump in my neck and they said might need to do another. The Registrar said he had never seen it done before nor done it so I told him I ddnt mind if he did it as he had to learn sometime.I also told him it was less painful than pathologists. I was told a week later I had abnormalities with the biopsy that they needed to check. It wasa Fri nioght and I was at Heathrow Airport. My own doc was on hols but spoke to another doc in the practice and he said with my history it could be Hodgkins Non Lymphoma. I called registrar on the Saturday and he said they didnt tell ppl these things oobver the fone and I told him he wanted me to wait for 48 hours for him to tell me on the Monday when I went into hospital what I already knew. He agreed. I asked him if the abnormalities with the biopsy was cancer and he said yes. I told him I would see him on the Monday!!!

I dont want to tell u everything as every cancer patient is different. Treatments vary but u will get the best. Treatments have changed since I was there but you are first person I have spoken to that has this cancer. It is a RARE cancer and mainly occurs in China where it can be 60% of cancers in an area.

Do you smoke? As I said earlier I did but stopped after saw Radiologist. It was EASY to stop when u get told u got 5 tumours. I keep in touch with staff at the hospital still and they are and were a great source of support. Which country are u from???

Keep in touch

Ron

Hi Ron,

Hope you had a good week. Sorry not popped into this thread for a bit. Have had an up and down week.Myelderly Mum has not long been in residential care and have been to see her, work and going to hospital with my husband (he is the cancer sufferer in our family) I supposed I could call myself a survivor in the fact that I am coping with being the wife of someone with incurable cancer. I feel that I survive on a daily basis and quite honestly this forum and the people on her are my supporters. Me and the family are currently getting ready for Christmas (happily our children only live minutes away and sister in law and brother inlaw and his wife all coming to us (we work on a rota basis and its our turn).  With a 4yr old grandson having just celebrated his birthday we now move onwards and he is very excited about Father Christmas coming to see him! This is a wonderful help. My husband had three sessions of chemo for a 'holding' therapy for mesothelioma - cancer of the lung membranes caused by childhood exposure to asbestos. This treatment has now been stopped by mutual agreement with the medical team as his side effects were very bad and he was struggling to recover afterwards. It has given him  a small shrinkage of the mass and he has been able to slightly reduce his painkilling regime - all positive for now.  Just trying to build him  back up now so that he can enjoy the festivities with us. So far so good as his appetite is slowly improving.

Do hope you and the family enjoy the festive season and keep staying well.

Regards Jules

Just remember you have lots of friends in here xxx

Hello Wafita,

How did you get on today???

Hi Ron

Thank you very much for taking the time to reply to my post and I apologise for the late reply as am not very good with technology and I couldn't find my way back here again

I read your story and I must admit what a story!! U have been through alot and am glad you stood your grounds and kept checking and inquiring about that lump! it paid off at the end and u got rid of the nasty thing forever! congratulations again

regarding your questions yes I smoke bt I also stopped as soon as I found out! I am from north africa ( morocco) but lived in england for nearly 30 years now! although they say this cancer is common in north africa, it actually nearly never heard off from where I come from, probably other parts of africa bt certainly it is not popular in morocco! MY neck lump is getting bigger bt no bigger than 3 to 4 centimeters I think. I have an appt for MRI scan next thursday and 1 for CT scan next friday!! I have been trying to see if there is any cancellations for a week now bt no luck I am just afraid that by wasting all this time once the stage of my cancer is diagnosed it will be stage 3 or 4 I hope it won't be too late by then! did you get any side effects whilst u had the lump and before u started your treatments? I am having ringing in my ear and now I am starting to get pain in the back of my mouth!! also what other side effects do u have now that u had to live with after being cancer free?

keep in touch and I will keep u updated with my progress.

take care and merry xmas if I don't hear from u before.

Hello Wafita,

Good to hear from u.

Glad to hear things are on the move as it will be your biggest worry. I never had any sideffects from the tumours in my neck but what may be causing it is that where the primary tumour is ie back of the nose is where your ears drain into your throat so that may be causing pressure in the ears. Mention it to your ent consultant or your radiologist nxt time u meet them. The pain in the thorat could simply be a throat infection - its the time of year!!!!!

Your MRI and CT scans will be to determine where any of the tumours are and to get an accurate size. This is standard. Get used to all of this and I remember I was told my my radiologist, Are u in a hurry?? I said Yes to beating this cancer and he said You will get used to waiting. And I did as treatments run over, machines break down etc etc etc. Also get used to blood tests as u will get a lot of them.

Dont worry if your tumours are at stage 3/4 - mine were at that when I was diagnosed and Im still here. My biggest tumour was 7.5 cms so u got a lot to go yet!!! Speak to your docs re treatment as everyone is different and everyone reacts differently to it. Also make sure that you tell them you want to know everything - even the worst news as that way they will tell you.

This cancer is rare and most treatments come from work carried out in China where it has a very high incidence. my treatment which was chemo ( 4 Methotrexate treatments ) and 38 radiotherapies in total. Dont worry if they increase your radiotherapy as they might say they will give u 20 as they did to me and I got 38. They say that smoking does not cause this type of cancer but I dont remain convinced of that.

Good to hear things are on the move.

Hear soon

Ron