My husband was just Diognosed with Carcinoma, its has been along year and 1/2. He found a lump on the right side of his neck when he was shaving, in may of 2007. He went to our family doctor and she sent him to a specialist and it too 5 mths before he got to see him...when we went into his office he look at us and said I don't even know why your here I'm not the right doctor for the type of problem...we were dumbfounded....shocked...This specialist then booked him for a head and neck spec..which we waited another 2months..Xmas around the couner, he went to see the head and neck spec and had a biopsy done...the Dr called us two day before New Years, and told us to enjoy the rest of our holidays that the mass was clear...however it would need to be removed and he would be put on a waiting list...so 6months later June 25 he had a lump removed and every thing went great...he healed quite well...until the shocking call on July 25 that the spec..wanted to see him..we went in and they told us that the mass they removed had a tumor inside which was the secondary cancer. You could have knocked me over with a feather...the next step was a second test to see if they could locate the primary...and remove a toncil....well they removed the toncil and part of the base of his tongue. Which was the primary cancer. He is starting at the cancer center for treatment of Radiation and Chemo...I"m gong out of my mind and don't know what to expect...I'm so angry..not at the word cancer but at our family dr..who I might add is not longer...this could have be done and over with I'm scared out of my mind...sorry for the book but I need to get this off my chest...My shoulders feel like I have a 500 lb head sitting on it..thanks for listening....

I want to reread your message and then I will post more but I just wanted to say a "hello" as soon as I could because I know you need to chat right now - I understand - I am a care giver to my father....more in a bit....you are not alone and have come to the right place!

This disease is scary enough with out all the cr@p you have had to deal with. I can't tell you how sorry I am that you got this horrible treatment with the appointment/diagnostic run around. Unfortunately it seems to happen quite often with this type of cancer.

My father too found his cancer by noticing a lump while he was shaving. It wasn't painful so he didn't think too much of it. Sent them an email....they gave him an antibiotic...no effect....contact again...fortunatley an alert person sent him to an ENT fairly quickly but it was still two months before treatment and he stomped his foot and called and called and took any apointment at any time for anywhere he had to be!!

Did they stage your husband's cancer? how much of the base of teh tongue did they remove? when was that? is he home? my father just finished his chemo and is almost done with his radiation. Are you close by to hosp or do you have to travel. You have come to the right place for support - even if you just need to get something "off your chest" - folk here understand. Give us some more info so myself and others can give you the best help that we have found to work for us. Everyone is different and we all respond differenlty but yet some things are the same...

Hello there Linash and welcome. You have every right to feel angry, if you have been reading some of the posts recently, your will have seen (in court tomorrow) one of our members had a similar problem with the dentist. I don't know how things work where you are but if read Liz's posts, its a bit like knocking your head on a brick wall. Anyway, you have found this site now where you can ask all the questions you like, there will always be someone who can answer your problem. My husband didn't have surgery because the consultant said it would be too radical with not enough healthy tissue left to rebuild a new tongue. He underwent chemo and radiotherapy. This time last year, I didnt think he would see christmas but he has now been given the all clear.

You have a few hills to climb but you dont need to climb them alone, we are all here for you.

Keep us posted on how you are both getting on.

Angie

ps My husband's cancer was stage IV

my father was also not a good candidate for surgery as the tumor was too large....you give me hope angiebaby - thank you...

As angiebaby said, wwe are here for you Linash

Thanks so much for responding to my book...HelpingDad and Angiebaby.. My husband and I are not very far from the hospital which is a good thing...The Specialist that he has is wonderful very caring...and understanding..He has been staged (stage 3)...his first surgery was June 25/08 when the removed a 1lb mass from his neck which they told us months before it was not cancer. My girlfriend and I went to Austraila about 3 weeks after...trip was book for almost a year. I was not going to go but boy he bounced back quicker than I could print of my ticket!!...he healed well and was eating well and told me to go...Well I spent 3week down under...and got home on the 25 of July, he he picked me up at the airport and he looked awesome. Then the bomb was dropped!!! We were told just a few days after. The second surgury was on Aug 13/18..they removed the right toncils and the piece of the base of his tongue was just a bit larger then a toncil...Yes I am lucky that they were able to do the surgery...Radiation and Chemo is a given and I don't want to see him go through it..I'm scared to death for him...Everything seems to be happening all at once. HelpingDAd...I'm so sorry to hear that your dad went through the same thing...and Angiebaby your right about (court)...I'm glad that your husband is doing well and it is people like you and HelpingDad that get me through the day...thanks again for the shoulders and I'm sure I'll be back....it makes it easier to talk to someone that went through the same thing and I so much appreciate your listening...his treatment will more than likely take us through the holidays but damn it I made up my mind I still going to cook a Turkey with all the trimming for me and my girls!!!Have a good night

Wow, Linash, what a rough trip. I thought it was bad that it took about 2 months to diganose my tonsil cancer. Then it was about 5 weeks after that before treatment actually started. Anyway, I didn't have the surgery because the radiation burned away my tonsils. I, too, started with a lump on my neck so my family doctor sent me straight to an ear nose and throat specialist who did a needle biopsy and diagnosed it as a stage 3 malignancy. But then it took almost 2 months after that to find the tumor on my tonsil. As to what to expect, once radiation and chemo have started, he will probably be able to eat for the first 1/12-2 weeks then stuff will start tasting bad and his salivary gland will not produce enough saliva. Also, expect swelling in the throat making it hard to swallow. He probably should have a feeding tube put in. Even with the tube, I lost a lot of weight, so he should try to put some extra weight on before. I had the 7 week treatment and at about week 6 completeltly lost my voice, which lasted maybe 8 or 9 days, and developed a burn on my neck which was treated with silver sulfate. On the chemo side, each session takes about 4 hours during which he will be able to get up and walk around, just have to pull the IV contraption around with him. For me, the nausea hit about 2 days after the chemo weekly treatments. Compazine and kytril helped but didn't totally avert it. That all ended on march 20th and 2 weeks ago I got the results of my last pet scan and am now cancer free. My taste is still messed up though my sweet tooth is coming back and I can eat things like ice cream and jello, and I guess my salivary glands will not likely ever be normal so even when food starts tasting good again I'll have to wash everything down with plenty of water. But the main thing is, I am cancer free and sincerely hope for the same for your husband. It's a tough road to go but, life is worth it. Be strong.

I have much to say but must make this quick as I am off tomeet clients. I am glad you came back

Do you know what type of chemo he will be getting? How many rad treatments? Have you met with the onc and rad docs yet?

I found making lists really helped to stay focused and informed. A list of questions, a list of products to buy, a list of things to do to make his house better for healing, a list a lists and of course that lead me to other lists

I will send you some of the info that helped me when I have more of a chance later - THANKS!!

and btw - it is ok to be scared, normal, even healthy and ratinal feelings in this scary time. I didn't cry until i was looking for some cards and they said "get well soon" WELL he knew taht damn it - I just broke down in teh card isle. I didn't buy any of those cards I bought better sounding cards and mailed them even though I see him all the time - you can do the same even though you live together

I also made sure not to ask him how he was every day - COS I KNEW HE FELT AWFUL - he didn't have to tell me that - I would just say hello and be there - let him tell me if he wanted....

also try - I SAID TRY not to wince if he wince in pain - he is going to have pain but watching your face in pain will only make his pain worse - be there to hold him and love him and support but stilllet him be independant - afterall he his your man more later....

Thanks David...Wow you have been through a rough time...I am so glad to hear that you are cancer free, and appreciate the heads up on what to expect...I've been doing a lot of reading on this type of cancer and it is scary...Sometime I just got to a point where I just could not beleive what had to be done in order to get results...and I must say "all these response are scaring the heck out of me " but I beleive that I will be able to handle it better and be strong for him when the time comes...thank you so much for you story and I hope to hear more....Linash

HelpingDad,,,oh dear me...you have such good ideas..I tend to want to ask him how he is doing more than once or twice a day, and as for the cards I'm going to stop on my way home and get one...I feel a tear now....thanks again

My father also had 7 weeks of chemo and 33 treatments of rad - he just finished on this last tuesday. His chem was once a week and took 7 hours - he had cistplatin - now he had soem pretty good anti nausea meds - they gave him a bag with the chem and then two sep pills afterwards. They also gave him steriods - and after the first treatment he thought he was going to build a new deck on his house (SILLY GUY) by the third day (and the rads had started) he realized that was just the roids talking and instead he opted for long naps rather than deck building ....more in a minute

IMPORTANT - do NOT wait to feel nauseus to take the nauseus pills!! take them religiously or you can find yourself (as my father said) on the kitchen floor, doubled in pain and chewing on pills because you can't swallow but not able to crush them like normal and will do almost anything to stop the pain!

The RT made my dad a little dizzy afterwards and it was good to have rides. Build support groups if possible. We had one friend who was "taxi dispatcher" and he would coordiante all rides. Ask to have a medical support group if you have any friends or loved ones who could help in this area. Have a spirtual support group. Nutritioanl support. and you can be the coordinator and the omsbudmen.

My dad did not need a peg but he did lose 30 lbs in 30 days. he constantly sips on ensures all day long - watered down ensures because they are too thick - even water hurts to swallow. Watch out for thrush - nystatin is a quick fix but it took my dads docs three time to recognize it when we knew better.

My dad loved teh biotene gum but then was to much work. they have mouth wash and there is a spray for "fake spit" yes I said fake spit - the brand here is called stoppers. MY DAD"S FAV STUFF!! buy pure aloe gel and Eucerine Aquaphor ointment - do not put on before rad but glob on after. Some get bad phlegm. I gave my dad paper cups with lids so he could spit into them throughout the day and then cover and then thorw away - so no one has to see it - or clean it and he can remain independant....

My goodness, you sure respond back...he has his appt with the ongl...on the 23rd..consulation...not sure how long after that he will start but I'm sure it won't be long...I do know that it will run for 7/8 weeks, both Rad..and Chemo...but I'm not sure if they will do both together or Rad...first or Chemo first...I'm knew to this and I hope once he is cancer free I never have to go back..See Helping Dad...youv'e got me thinking positive already...well I'll chat with you later....you can be sure I'll be back..now that I know what you do for a living...I work for a life insurance company...and let me tell you it is a hard job now!!!

the information can be scary but allow it to empower you and be STRONG - stronger than you ahve ever known. Attitude is important!!! this is treatable and beatable - mantra. we started to say we will going to kill the cancer but then changed it to the cancer disappearing!!

look at your house and see what you can do to make it better. does he watch TV? get Netflix. might b easier to sleep elavated. meditation music. vaporizor for moister...keep learning adn keep thinking AND MAKE SURE YOU TAKE CARE OF YOURSELF