Hi Gwyn.
I know Anglesey very well and have spent many summers birdwatching, camping and canoeing there - a truly beautiful part of the world.
My wife and two daughters are fluent welsh speakers but even though I have lived here for 20 years, sadly I can only manage a few words
Regards,
Gary.

Update.
Had a needle biopsy of lump in neck - result in two weeks but doc thinks it is a tumour on saliva gland and 90% it will be benign.
Had endoscope in larynx - found unusual cells there so have to have surgical biopsy (general anaesthetic) in two weeks. Had chest x-rays,blood taken and booked in for ultra sound in two weeks.
Doc is more concerned about cells in Larynx than anything else.
Won't know any more for 2 - 4 weeks when results are collated.
More waiting...
Gary.

I understand what you mean about the waiting - it took almost a month from GP visit to treatment for my dad and it felt like an eternity of waiting but i guess we have been on teh fast track but when you want/need answers time moves strange - thanks for the updates and be sure to let everyone know the results - thinking positive thoughts for you here in CA..

Hi. Sorry for delay in updates but have had nothing to report until today. After Micro-Laryngectomy, results were fine so went on to have lump removed. Yesterday I was told it was a Malignant Lymphoma and I need a full scan and more blood tests, and to wait for the cancer to be graded??? To say I am in shock is a massive understatement....I fully expected to go home telling everybody it was a cyst. I didn't ask any questions at all. I just wanted to go home and be with my wife and daughters.
I will update soon.
Thanks for listening..
Gary

Hi Gary,

Really sorry to hear your news. I am just helping my friend Paul but at the bad news consultation for him we were able to spend some time with a cancer nurse assigned to his case and who was able to go through everything again with him, his wife and me. I had put together a list of questions (hoping I wouldn't have to go past the 2nd). As it turned out the list was very helpful and the cancer nurse wrote the answers down, we have referred to that many times since. Maybe it is worth ringing the hospital and see if you can do something like that with someone as it really is helpful after the intitial shock. My friends have found taking me along very helpful as the third, not so close ear probably is a bit keener in the circustances.

Hope this helps a bit, can put list I used on if you think it may be of use to you.

Hope all goes well.

LoL Joan xx

Thanks Joan.
I would appreciate your list immensely because I am in a bit of a numb state at the moment and can't think clearly. A nurse left a message for me earlier but I was out and haven't been able to contact her since. The idea of a third party to listen and understand things is great - I wish I had had the forethought, I honestly expected to be sent home with no no problems, I even had my 9 yr old daughter in the waiting room....
Thanks so much for your concern and help,
Gary.

Hi Gary,

This is the list of questions we took with us. Paul's lump was at the side of his neck - this turned out to be a secondary and the primary is at the base of his tongue. You may have to change a few of the questions, but may be a starting point.

1. Specifically, how many tests have been performed and what exactly were the tests on e.g. tonsil, tongue, lump.

2. Are all the tests results available at this meeting - what are the results of the tests? If not present when will they be available.

* Fine needle aspiration
* Blood tests
* CT scan
* MRI scan
* PET scan
* Biopsies
* Ultrasound

3. Where exactly are the biopsies showing a problem - in the back of the throat, in the neck or both?

4. How do you tell the difference between a primary and secondary cancer?

5. What is the stage and grade of my cancer and what does that mean.

6. What is involved in the surgery, what exactly does it entail? How long approximately will the operation take?

7. How will the surgery affect my speech and swallowing?

8. How long will I be in hospital and when will I be able to resume work?

9. Will I need additional treatments after surgery and if so what will the treatments be?

10. If additional treatments are needed, approximately how long will they take?

11. Will I be able to work whelst having treatment?

12. If I need to have radiotherapy, I would like to know about Intensity Modulated Radiotherapy or Conformal radiotherapy and are they
available at this hospital?

13. How will my cancer be monitored following treatment and who will be looking after me?

14. What is the prognosis of my cancer and what will my quality of life be after treatment?

Hope this helps Gary. The day after our meeting Paul had a neck dissection. He is a building contractor and has been back at work properly for the past fortnight and bits and pieces the previous two weeks. He is due to start radiotherapy and chemotherapy on the 10th November. He is fine, very positive, sense of humour still as keen as ever - says this is another one of lifes adventures!!! He said he can either sit with his head in his hands feeling sorry for himself and why me - or he can say why not me and just get on with it, he has chosen the latter. For my part I have put together a box of anything that may be useful or help to try and keep him as comfortable as possible when he starts his treatment and a few preventative measures as well, all picked up from other members on the forum and of course Dr Joshi - so ask away cause you will get all the support you need here.

L o L

Joan xxx

Joan,

What a great list! I'm copying it for myself so that if someone needs it, I'll be prepared.

Thanks for sharing this.

Mimi

More advice:

• Questions To Ask Your Doctor About Your Cancer
• Next Steps After Your Diagnosis
• Barbara's Book

There are other resources on the MCF website in the "Cancer Guides" section.

Many thanks for the list, I will be talking to my people today. I was told yesterday that I am being transferred to a different department, not ENT any longer so I guess I might be in the wrong forum from now on......If that is the case, I would like to wish everyone good luck with treatments and thanks for all the help and information this forum and its users has given me.
Gary.

Hi Mimi,

Thank you for your kind words regarding the questions, however I cannot take the credit. I tailor made them to fit Paul's case from the links that Dr Joshi had put somewhere else on the forum, it was the same list. To be honest I trawled around in the beginning and stumbled on this forum and think that is where they came from. The consultant however was amazed when we gave them to him, said he had never seen anything like that before and said he would like to keep them in his file. Was surprised about that.

Hellow Gary, good luck today and please let us know how you get on.

LoL

Joan xx

Hello Joan.
I have been transferred to a Haematology team. My Lymphoma has been sent to Cardiff to be Graded and identified. This will take three weeks..... meanwhile I have to have bloods taken and a ct scan to look for any other signs of cancer elsewhere.
The waiting is possibly the worst kind of torture possible...
I will keep you updated if you like.
Sorry for sounding negative - its how I feel at the moment.
Hope you are well.
Gary.

Hi Gary,

I am so sorry that you now have to wait and I cannot offer any advice as to how best to do that. Years ago I had a lump in my breast, which turned out to be a small cyst, worst 10 days of my life waiting for the result to come back. I think that the waiting is terrible and in the end it is such a relief to just know. Don't think you have apologise for sounding negative in the circumstances but time will pass and then you can get on with whatever treatment will make you better. I am fine, thanks, you just look after yourself. Keep us updated, plenty of love and support here.

L o L

Joan xx

Hi Gary

I am so sorry to hear your news. It must have been such an awful shock. One of my best friends has just been diagnosed with Hodgkins lymphoma, a year after my own diagnosis of mouth cancer. She is currently having chemotherapy and is doing well. She had all the tests you mentioned, plus a bone marrow test, and her cancer has not spread. Like you she had to wait months to get her diagnosis confirmed (but was reassured that this would not affect her outcome). The waiting was dreadful, but now she has started treatment she is coping and just feels relieved that they are dealing with it.

I hope everything goes as well as it can for you and that you will soon be on the road to recovery as well. The time of waiting is awful, but it will eventually pass - I have had two such experiences myself. I will be thinking of you - do please let us know how you get on.

Yours

Gwyn

Hi all - sorry for delay in replying, I've had a lot of tests and results to wait for.
Turns out I have Low Grade Non Hodgkins Lymphoma at stage 1 (which is very early).
I am not receiving any treatment but have been put on a watch and wait regime where I am monitored at 3 month intervals for signs of anything unusual.
Any way - its nice to have some answers finally and i can concentrate on being well.
Thanks for all the support from this forum and I wish you all well.
By the way Gwyn, I am originally from Leicester, now in N.Wales - small world isn't it...
Gary