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
Original Post
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 Coffee
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.
SmilerHi 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
SmilerHi 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!
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
Well, I've finally gotten some sense out of the ENT office at RSHH; they are going to do a biopsy on the base of my tongue and a modified neck dissection on the left side of my neck next thursday; the only problem is that the dissection was not spoken about in my last consultation, and I am still wondering about a second opinion. Has anyone had experience at the Southampton Hospitals for treatment/surgery? And is a second opinion a good idea

No Surrender

Mike Masterson
The trouble is Garance...is that all the consultants and medical writers try to generalise oral cancers and often underestimate the intensity of the R/T, surgery, and what it does to you. When my consultant tries to pep me up with comments such as: "you are looking admirably slim" ....to me it means unhealthy looking and under weight. Before treatment he told me I would experience some soreness and some pain....not nuclear war style RAD burns and pain that morphine could'nt stop. The only way anybody can know what its like to go through is to have it done to themselves. Nothing quite like the real experience.
I totally agree with you Steve. I found that the consultants seem to play down the side effects of the treatment. I was told I would feel a 'bit' tired and I would have a 'bit' redness to my neck.........that was the understatement of the century!!
Even now 6 months after treatment I am very tired just doing everyday stuff. As for the burns on my neck, my skin was falling off!I had a nurse come in everyday to change dressings, hardly a little redness Frowner
I just wish they could tell us how it is, hiding it doesn't help anyone, I wanted to know all the gory details so I was prepared. It actually made me feel like I was exagerating my symptoms because they played them down.

Maybe it should be part of their training to have to go through a course of RADs and then they would be in a position to tell patients how it REALLY is.
Maybe not.. I wouldn't wish that on anyone.

Best wishes
Tracey
Absolutely Tracey.
I actually started to feel a little guilty for being so ill, and every time I saw my consultant I felt as though perhaps I was the worst patient on record because of my persistant moaning about the dryness, and stiffness in my neck, the pain, the burns, etc etc etc. Still a bit angry actually about the lack of truth before it started, and i don't want to resent the man who...essentially saved my life. Strange scenario isnt it.
I agree with Steve and Tracey. The consultant was very relaxed about deafness in your left ear, burns, sore throats he never mentioned anything about the burns that required dressing daily as it was raw skin, and the redness and soreness is still there 56 days after RT finished. He never mentioned anything about the mouth ulcers either come to think of that!

However, at least his registrar had more about him on what it was going to be like!
Well, It all begins for real tomorrow; I'm off to Southampton for a modified neck dissection, and laser surgery on the base of my tonue thursday am! I'm not sure what the extent of the surgery will be, but I am glad to finally get rid of this monster! Thank you for all of your information and support, and I will keep you informed of my outcome.

No Surrender

Mike Masterson
hi, i just wondered if someone could help me. My cousin is 46 and has cancer on the base of her tongue, they have oprated on her neck and taken all her saliva gland thyroyd glands and two arteries, she is now haveing radio and chemo she is having a really tough time as every one she has known and loved with this terrible illness has died. I would like some positive input on how i can make her feel better so she can carry on with her treatment as she is seriously thinking of interrupting it. thank for your help
Hello Yolanda, you can tell your cousin that there are people that have lived with this horrible disease for almost 17 years. I can honestly save however that those 17 years have been harder than most. That there have been tears, fears, pain, loss of friends & family, hospital stays, rehab, chemo, radiation, and so so much more. The good side is I have got to see my 2 children grow up, marry have grandchildren. I have got to love my husband, my TRUE friends, my wonderful family. I survived. When all the books, magazines, articles say that 5 years is as long as you will make it....Well I guess for some of us, that just isn't the case...Best of luck to you and your cousin. I will pray that she has the BEST doctor ever....Always, Vicki Lynn

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