Greetings! I am Mike Masterson, living in south Wiltshire; and have been struggling with cancer for the past two months; lump on my neck that is seconday-still looking for primary (deeper biopsy on base of tongue) as the growth is too small to cause secondary. This may sound strange, but all I want to do is get this sorted! I know that difficult times are ahead, and I will need all the help that I can find. Right now I am waiting for another biopsy, and treatment will most likely begin after that. My wife is in the States for the next two weeks, so I'm felling vunerable at this moment

Hello Mike

Your story sounds similar to Pauline's. Hopefully her story will inform you of what might lie ahead and also inspire you. You will find us all willing to help where we can. Take care.

Best wishes
Vinod

Welcome Mike there is a sackful of support and experience here please feel free to ask away on here we have been through it.

Thanks Nigel, Vinod,
I guess my biggest question (fear) is that if a primary source is not found (so far the cells on the base of my tongue have not been classified as cancer), it looks like I will have general radiation and my fear with this is that if the primary wasn't found before the radiation, how will I/they know that it is gone after the radiation? Also, if the need is to get the entire area clear, would it be a good idea to have chemo as well?

Hello Fovant

I am not sure that you will need chemotherapy but your oncologist will advise you.

quote:

Despite the ominous situation of an undiscovered primary, a significant number of patients do achieve cure by both surgical and radiotherapeutic approaches. In some patients, long-term repeat examinations will eventually disclose the primary tumor, and at a treatable stage.

Hope you find these articles helpful:
Metastatic Squamous Neck Cancer with Occult Primary (PDQ®): Treatment
Neck Cancer, Unknown Primary Site

Best wishes
Vinod

Hi Mike.I think the toughest thing you will have to deal with is the Radiotherapy. That is tough going and drags you down.
Fortunately as previously mentioned by Nigel, we all have our experience to fall back on and all have top tips to offer to make your date with cancer as comfortable as possible.
it's going to be a trying time, and during your recovery period you may well spend a lot of time on this site....i did. We are all here to help.

Hi Favot, don't worry before or when you have the news whatever it is, just be very bloody minded that you will get through this most painful episode in your life, and gather as much info, from this website; I wish I had found it prior to surgery; just ask away here, many have been through the worst of the worst, and still here to tell their stories. Big Bear Healing Hugs.

Thanks Garance/Heathrow Steve!
Your support means alot to me at this time. I was wondering if anyone has had a radical neck dessiction, and if they thought that they did not need to have 32 lymph nodes out when only one was cancerous? I have been in touch with the M.D. Anderson Cancer Center in Houston Tx (I used to live in Texas) and they tend to remove only what is infected. Does anyone have experience with this issue?
No surrender! Mike

Hi many of us have had the radical neck resection, I still feel as though I have been hit on the side of the head with a cricket bat eery morning, also without the lymph glands, the fluid has to drain out, so I wait for my nose to run like a tap, and then I am ready to face the day; yes go for it, you want to get rid of any bit of the creep cancer cells. End of Nov will be two years since my 'ops, Big Bear Healing Hugs

Hi, I also have had a radical neck disection and was told they take out most of the glands as a precaution. Like Garance, I have to wait for the fluid to move or gently massage my neck until I can turn my head of a morning. It's a small price to pay for peace of mind. Good luck. Bx

Mike

I had a radical neck dissection the week after the cancer was found on my left tonsil. There was a lump on my neck, which gave the consultant the view that the primary was some where to be found and the tonsil proved to be the winner.

I had 32 lymph glands removed, only the one that had shown itself and was needle biopsy had shown itself to be containing cancer cells. I was pleased to get this news so I could concentrate on getting through the RT/Chemo.

The removal of all the galnds makes sure that the access to the lymph channels are removed and gives you the chance of preventing spread futher into your body which is the last thing you want.

The neck dissection which took place in May does leave me stiff still, but as I had RT I think there maybe a combination of the pain. I am having physio for the shoulder and some of the numbness that was caused by nerves being strecthed is going.

I actually think the neck dissection was the easiest part of the whole treatment, but it did have its painful moments, but the morphine was always on hand!

The one side effect of the neck dissection was a double chin as I am told fluid drains into it and RT will cause more to do the same. It is going and my consultant told me as time goes on it will go.

Hi Nigel

I also had a neck dissection,and I too have stiffness and pain from that side.
I had a check up yesterday and mentioned this to my consultant, he said that was to be expected because of all the treatment I had.And this could last a while yet. I don't know about you but I also have a swelling on my neck, but he didn't seem too concerned about that,he said it was probably scar tissue.
It's funny you mentioning the double chin, mine has gone since the surgery!Plastic surgery without costing a penny!

Best wishes
Tracey

Thanks All!
I am going to RSHH tommorrow for blood work and paperwork for the next biopsy; all my doctors on on hols or conferences and I still I'm not sure exactly what they are doing: A phone call to the RSSH results in "you have alot of work being done!" What do you think my chances of getting an NHS consultant to talk to an ENT specialist in the US would be (or is it worth my/their time)? Visit- http://www.mdanderson.org/Care_Centers/HeadNeck/display...D4-AEC300508BDCCE3A, to review what I am referring to


No Surrender
Mike

Hi, I have read the notes on the web site you printed up, I suggest the bloke who wrote that should get one done and then re write, I can tell you I was in no state to come out of hospital after mine, I am sure no one could. !