Hi, I was diagnoised with a cancerouse lympth node on new years eve 2009, and had a precautionary right tonsilectomy on the 21 jan which turned out to be the primary now waiting for chemo and radiotherapy on 15 march!
finding it difficult to get info on how bad / good this is! help

Hello Mike
Welcome aboard! You've certainly set the year off to a full-on start, haven't you?
I'm sorry you've had to come looking for our support but believe me, you'll find no better spot to meet your needs. If you have a good roll over the various posts you will read some pretty scary stuff, some great advice and some very inspirational stories of survival against the odds.
It can be a very rough ride, however there are many who have taken the trip before you Mike and despite feeling that life would never be worth living (if, in fact they did live!) there are so many survivors who can tell you how they have adjusted to life as it is for them now ~ never quite the same but fabulous nonetheless.
Hang in there, mate and ask away any questions you want answered (no dounbt there are hundreds racing through your mind), unload all of your fears for yourself and your loved ones. There will always be someone here to listen and get you through.
The early days are tough because everything seems to be in slow motion but once your treatment plan is plotted and you're into the routine of things, time will soon have you on the other end of it all, wondering where the time has gone.
You can do this and we're all here to make sure it's as smooth a ride as possible.
Take care, Mike
Thinking of you from Down Under
Deborah

Thanks for the welcome Deborah. This has been a great shock to both my wife and I. i was told on 31 December that it was urgent to start radio therapy as soon as possible! However if a PET scan could be arranged within 3 weeks they would hold back treatment un till then. The PET scan was arranged for the 14 jan then they decided to take out my right tonsil before getting the results (my ent consultant did not think it necessary but the MDT did so he went along. The PET scan was clear but the tosil proved to be the primary! Thank god they took it out. Now they have decided I need Chemo as well as 7 weeks radiotherapy but they cant start untill 15 March. This waiting is the hardest thing. I dont even know the grade etc of the cancer other than what I have tried to work out from the internet!( IVa i think) Seeing ent surgeon on Monday for a chat.
Does having chemo, cisplatin, and radiotherapy at the same time make the side effects much worse or just the same?

Hi Mike,
Sorry to hear you are going through a difficult time and with so much uncertainty.I haven't been diagnosed yet but have to have a biopsy done in the next couple of weeks so can really relate to how you are feeling.
One great thing that i have discovered about this forum is that people know "exactly" what you are going through and you can get loads of advice and genuine support from other members who understand and can help you through your journey and to come out the other side.

"The best way out is always through"

All the best,

Dave.

Hi Mike ,
Sorry about the bad news. I am into my 6th year post surgery/rads. I had 2ndary tumours which had burst out of 2 of my neck lymphs - quite large. I was grade 3b or 3c so I don't think you are on a grade 4.
I presume you are going to have a neck dissection too. The waiting isn't too good but once the treatment begins you will have found a whole new focus. Take it easy - day to day - don't rush - set yourself small goals.
It's not easy - but with help and support you will get through it.

Plenty of moral support and good advice off this site.

good luck - tony k

Hello Magpie Mike,
Your story is not unlike mine, I was diagnosed with tonsil cancer in December and then had surgery to remove lymph nodes and the left tonsil, recovery after this was not too bad. Met with oncologist who said ideal time to start radiotherapy was 6 to 8 weeks after the surgery. So on 15/2/10 the treatment started. I went into hospital as a day patient and was given cisplatin the chemotherapy part of the treatment. This meant a drip in my hand where I was given a big bag of fluid, to stimulate my kidneys followed by more fluids then the chemo (cisplatin) then another big bag of fluids this time with some minerals to replace what had been taken out. Then I had my first radiotherapy and after being weighed to make sure I had not put on more than 2.2 kilos I was allowed to go home.
I have been going daily to have my radiotherapy since then and have done 5 and have 28 to go. From talking to the oncologists, nurses etc I am told the radiotherapy is the really important part of the treatment, The chemo being "belt and braces" apparently it makes the treatment work better. After one week I thought I would feel ok but to be honest I am really tired I just want to sleep, I get up and get ready for the hospital which is an hours drive have my treatmeny and come home, I did have all the ideas I would drive myself but this hasnt proved to be the case. Once home I just sit and watch TV.
Im under no illusions I think that things will get harder but I will just try to do one day at a time until this treatment phase is finished. I am told its gruelling because it can be cured and I rely on this.
My best advise to you at the moment is to concentrate on your health and eat as much as you can of quality foods as this will help in the future, go out for walks.
When you start your treatment I have found that the nurses/doctors/radiographers are ahead of the game and seem to second guess what medication I will need and when. So far they have been really good.
Take care and stay in touch I have picked up a lot of helpful information from this site and it is really good to know that you are not alone and other people have had this and come through the other side.

Gd and Mike,

I am currently doing chemo and I did radio last year. I am a stage 4 I was told it is stage for when there is distant mestasis. So no need to worry Mike.

I was very tired after my first chemo but I think it is the nausea medicine so a laid back on it with the second treatment I took it when needed but didn't continually take it. And with the second treatment I was not so exhausted. Eat as much as you can with the radio I lost a total of 54 lbs over 6 months. Most was lost at the end of radio and after. When you mouth is too sore to eat your dr can get you a liquid numbing medicine which will numb you enough to get some food in. I used a lot of orajel.

Best of luck to you both.

Pam

Sorry,
what I did also mean to say was that the planning for the radiotherapy takes a number of weeks as this involves doctors, oncologists, radiographers and physisits so dont be worried by the time taken to sort this important part out. Have you had your shell made yet Mike?
good luck and keep us all updated.
My treatment is very similar to yours and I would be happy to answer any questions although I realise we are all different.

The wait time is also to allow healing of the wounds inflicted by the surgery.The radical neck dissection can take some healing! Also you may have to have dental work carried out. All this takes up the time. Plenty to focus on I know.
BTW I was in Northampton last night at the Derngate theatre. Very nice.

cheers tony k

Tony K
You are right the surgery does take some time to heal, mine wasnt too bad and healed quiet quickly. I keep getting comments from nurses and radiographers to say how neat the scar is, Im afraid my answer is always the same that is the last thing on my mind at the moment, but they tell me in the future it will mean something. I am only one week into my treatment and I am so very tired, lack any energy and keep feeling sick.
I have my treatment in Northampton but I live as close to Northampton as I do to Leicester. I agree with you the Derngate is very nice.

Hi Mike
how lucky you are to live in such a beautiful part of the world.I spent a lovely week in a cabin looking over Loch Eck a few years ago and drove every inch of the argyll forest down to the peninsula.Not so lucky with the diagnosis but ut sounds as if things have a resonable outlook.Rob had to wait for 6 weeks after surgery before he started his radiotherapy but its a trying time just waiting.Really the surgery is the easiest part of the treatment plan,the radiotherapy is the worst and with concurrent chemo you will no doubt feel like crap for a while,but its good to throw all the big guns at it and you will get all the support you could wish for from this site.

Wow!!
Just turned te computer on, what a fantastic supprise. had to go and give the wife a hug. I am not alone!.
I realise i have not given all the info so a quich summery.
I am 49 none smoker and only slight alcohol, 50 on 21 march all celebrations canceled.
Found swollen lymph node on right side 4 sept
saw gp 21 sept had fine needle piopsy 1 oct all OK! Precautionary ct 16 Oct 29 Oct results negative but gland had swollen again given option to leave it to see if it settles down or have it removed as the hospital was "quiet" leading up to Xmas. Opted to have it out.Had the lymph node removed 15 December with outpatient appointment for 14 Jan. Got call 29 dec to come in on News years Eve. The rest is History.
Squamous cell carcinoma with unknown primary The tonsil turn out to be the primary, but not picked up by PET scan.
I am sure i will get through this as whatever cancer is left in my throat and lymph nodes is small i.e. less that 1cm as it would have shown on the PET scan. It is just the treatment that scares me.
I live a 2 hour drive each way and a ferry ride from the hospital. They have offered to put me up for 7 weeks, mon - fri, in a hotel on site but obviousley the wife, 3 dogs and 5 chickens would have to stay at home. I am hopefull to be able to do the journey at least for a few weeks, am I being to optimistic? 23.5 hours in a hotel between treatments does not appeal.
Thanks again for the support i need it. My wife is nurse and is just to close to the situation. She is finding it allvery hard.

Mike,
I was hopeful of being able to drive myself the hour journey to hospital for the first two weeks of my radiotherapy. However I have had Cistplatin Chemo on the Monday and this has heightened the effects, they kicked in slightly last week, but Friday night they came to a head I am now really tired and have no energy. I didnt drive myself. I would take the offer of the hotel and its then there if you need it, If you are anything like me all you will want to do is sleep and watch TV anyway.
Your wife will find all this really difficult, thats only natural we hate to see someone we care about going through things like this.
It was my husbands 50th birthday just as I was being diagnosed, I fully intend to make his 51st birthday special, this also gives me something to aim for.
Take care and you will get through this.

HI! Your story so far is similar to mine except my pet scan did pick up primary in left tonsil. That was back in 2006.
For the first 2 weeks of r/t you will probably be ok (everones different)However, you will get tired. You need to eat well NOW! Put on weight so that you have a bit of leeway as your treatment progresses.
See if you can get a rota of friends to drive you - just ask they are probably wondering what they can do to help!
I had chemo at the same time so side effects are greater. Hey! I'm still here and enjoying life. I miss taste and just being able to grab something to eat when I feel like it (still need copious amounts of liquid to swallow.
Everyone here gives great advice. It is comforting that you can get answers from this special club and you are not alone.
Keep Smiling!
Anne

Hi cookey. Just to let you know Lock Eck is totally frozen with a lovely white sheen of snow today. Had a couple of pints at the Coylet inn, while I still can, today hence bad spelling in my last notificatiion. Can any one tell me how to reply to an individual comment?
I am getting my mask made on Thursday, having a ct scan and going into the simulator. At least it gets a lot done in 1 visit.