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Just Diagnosed

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Hello,

I was just diagnosed with a squamous cell cancer. It started in my throat. A 4 cm growth on the base of my tongue. My lymph nodes in my neck are also cancerous. They did a chest xray and scan and said my lungs look clear. I met with the oncologist yesterday and he says it is stage 4. They want to schedule a PET scan for Oct, 2. On October 15th they will perform an out patient surgery to look in my throat and to get a biopsy of the growth in my throat. They will also put a feeding tube in my stomach. Once week from then I am schedule to meet with the Dr. and begin treatment. He has already said that I will get chemo and radiation at the same time. Seems odd to me with a stage 4 cancer and wait 3 weeks to begin treatment.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

thats quite quit i was stage 4 tonsil into base of tongue with a lymphnode the size of a lemon.
I was misdiagnosed for 3 months told it was tuberculousus .
Then i waited almost 6 weeks to get treatment started.
Mentaly i think that was the hardest. Reading all the bad stuff side effects etc. made me crazy
It wasnt half as bad as i thought .
Because the lymphnode was so large. After waiting 6 weeks then
I got 6 weeks induction chemo Taxol Carboplatin and Erbitux.
Then i got 7 weeks of radiation doubles on fridays plus chemo Cisplatin daily on weeks 1 ,4, and 7
Then i got a radical neck dissection.
Radiation ended about a year ago and the operation was 10 months ago.
I am doing great now taste buds are still off.
Im 53.
Get a port for your injections put in when you get your peg tube.
Eat as much as you can right now pack it on its not quite eggnog season too bad that stuff sure helped me put and keep some wieght on
For me it started getting crappy the end of week 2 of radiation and it was hell till about 6 weeks after radiation.
Then it started getting noticibily better everyday.
I cant believe how great i feel now of course quitting smoking probibly helped alot.
And my sweet taste buds havent come back thats a blessing so i only put nutrious stuff in me.
The people here are great youll get all the tips and tricks.
Eat eat and keep eating thats your job now.
That and get your teeth all checked out and work done now.
I think iwas lucky i have a 3 year old son so when it was bad he kept me moving, if my wife wanted me to move id tell her where to go
if the house was on fire i dont think i would have gottin up but if your 2 year old wants or needs you, you move no matter how bad you feel.
And the more you move and the more more fluid and nutrition you get in you the better you feel its that simple.

.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Thank you for your reply. Yes children are a strong motivator. I have twin 15 month old boys. Hence the name do it for owen and john. thank you for your tips. Yes planning on eating a great deal.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

You will be getting better twice as fast as me.
Things i wish i knew . Are things like home hydration they leave the little needle in your port and you can hook up your own IV's for fluids when things get real bad last couple of weeks of rads and the couple of weeks right after. It sucked having that little needle in there had to be a little carefull around my 2 yearold those weeks but that extra hydration felt great.

Get the port put in with your feeding tube. I dont understand why so many people are against the feeding tube it was great when needed and not that much trouble. Just keep sipping fluids to keep your swallowing reflexs going. I just showered normally and used Cetaphil soap and some triple antibiotic ointment and it was fine.Get some netting its like a tube top from your radiation tech .
A feeding pump i think was good for those ruff weeks i could sleep and get food and water in me real slowly.
And i cant stress enuff the more fluids and nurition you get in the better you feel.
Finding the right balance and kind of pain meds was tricky i didnt like the oxycotin or the fentenayl patches. I settle on a Morphine ER extended release combined that with Roxicet a liquid oxycodone type percocet i really liked that stuff. Got off the morphine no problem just stayed on the Roxicet for a while . The Magic Mouth wash is great also its a lidocaine you swish around and spit out.
The only real crappy part was hacking up all that mucous the weeks after radiation stops.
Im 53 with a 23 year old costarican wife and a 3 year old son i am in Rhode Island now for past year getting the treatments.
I lived in the jungle in Costa Rica on horseback for 5 years before this. Now i am back to normal and i can wear out my wife and son.
I got a great mix of nutrition i still drink that i used to dump down my tube. I will post it to you later i got to run right now.

GotTheMask
Posts: 2
Joined: Sep 2009

It is not good to get a diagnose of cancer, but if you have to get it, this is probably the one to get, very high survival rate. Best advice, get a good team. You must trust them, I had a team that decded to do laser surgy first, then radiation, and chemo together. I also waited several weeks for the whole thing to start. My regular Dr. told me to pack on the pounds while I waited, I think it helped alot. My team decided to do chemo one day a week every week, in my case I think it made it eaiser to tolarate, you might want to ask your doctors about it. Most of your friends (and you are about to find you have more than you know) will wish you well, and pray for you...take the prayers, they help.
You have my prayers, good luck, from a guy who finished chemo and radiation 3 days ago.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Thank you for your reply and suggestions. Congrats on completion and I hope your next PET scan is clean.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Hi, my name is Rick. I was diagnosed in July. I am currently in my last week of Radiation treatments. The three week wait isn't unusual. Relax a little. The important thing is that you are getting a treatment plan established. The Pet scan will show where the cancer is and it's also used to set up the radiation fields. I'm confused how they Know the size and location if you have not had the test yet. Did you have an MRI first.

I know you are anxioux to get started and this is a scary thing but now is not the time to be in a hurry. Have you considered a second opinion? You should be at a major cancer treatment center. If not, at least consider a consultation with one now while you are waiting. You need to see a cancer dentist right now! Or at least your own dentist. Get any dental work or extractions immediately done. Tell your dentist you nned an appt tod

ay.

You should be eating everything in sight right now. Put on as many calories as you can, dosen't matter what it is, milk shakes, cookies, also go eat your favorite foods whatever they are, Steak and Lobster? You won't be able to for some time and everything will eventually tastle like crap.

Make sure you call your insurance company prior to any procedures and ask if you need pre-certification? Will avoid billing headaches down the line.

You need to get organized, really organized. Buy a calendar and binder. Write everything down. Take someone to doctors appts and have them take notes. later you can ask them what they heard the doctor say? You will be in a Wirlwind the next few months. Acceapt help that is offered by friends and family.

Also with those young ones it will be tough. I'm concerned about medications laying about. You will need a dedicated locking drawer type thingy to keep meds, gauze, feeding syringes, ointments, sleep aids, constipation aids, chemicals and solutions out of reach of children and organized for you.

Main thing here, major cancer treatment center and a second opinoin. I didn't do these and wish I had. Once you treatment starts you are pretty much committed. Best of luck, its all doable and unpleasant.

train-nut
Posts: 101
Joined: Jun 2008

All very helpful posts. There are a lot of us survivors around. It's one helluva initiation but plan on joining the group. Best of health to you and yours. Rich

Nidociv's picture
Nidociv
Posts: 10
Joined: Sep 2009

Hello doitforoj,

Do not get too upset about the 3 week wait.It takes time to find where everything is and for all the doctors involved to make your plan of treatment. I was diagnosed May 14,08 with the same thing. Main tumor on the base of my tongue and into lymph nodes on the left side of my neck. I didn't have my 1st chemo treatment until June 30th. My plan went like this.. I had 4 rounds of aggressive chemo(Taxotere,Cisplatin,5fu) They had too cancel the last round because of my blood counts and other things. Then on Sept.9,08 I began 7 weeks of Radiation.5 days a week for a total of 35 along with chemo of Carboplatin 1 day a week. Very very smart to have the feeding tube put in before starting. I had my port put in before starting but decided to wait on the feeding tube cause i am tuff. haha NO WAY I ended up in the hospital for 4 days then had the tube put in. It is a life saver. YOU WILL NEED IT. Anyways I finished my treatment on Oct. 27,08 I am still using the feeding tube for nutrition. I have just begun to eat soft foods like mashed potatoes with gravy, puddings, ice cream,coco wheats because of my salivary glands being so damaged by the radiation, my throat was too burnt and dry for food to slide down. I am able to drink everything by mouth now. It is a very very long road to recovery and every person is different but you will get thru it. Many times I sure wondered but I did. Just had my second Pet Scan and am still cancer free. When my ENT told me what I had, he said you are young and healthy, you'll get thru this but you will go thru HELL. Boy was he right. If there is anything I can help you with don't hesitate to ask. Stay Strong and Positive

pk's picture
pk
Posts: 192
Joined: Aug 2009

I don't think it took 3 weeks for my husband to get started but it was probably a week and a half. He had to have a pet scan, see a dentist for mouthguards(for radiation), have his feeding tube place and meet both the chemo and radiation onocos. His oncologists were all about the sooner the better. Today he finished his last Erbitux injection and has 3 more radiation treatments to go. This sight is great for support and getting questions answered from those who are in the throws of this cancer with you. PK

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Before you have your surgery, it would be a good idea to ask your doctor to have the tumor tested for HPV, the human papilloma virus, when they do the biopsy.
When I had my tonsil tumor removed at my local (podunk) hospital, no one even mentioned HPV. When I went to Johns Hopkins for a second opinion and eventual treatment, practically the first question the ENT asked me was whether my tumor was HPV-related. I told him I didn't know, so he ordered tissue samples and determined that it was.
Either way the treatment is the same, and the treatment sucks. But if you're HPV-positive your survival chances, statistically speaking, are far better than if you aren't. As others have pointed out, this is a survivable cancer regardless -- but knowing, going into the treatment, that my chances were something like 93 percent made a world of difference to me.
So, I'd urge you to have your tumor tested. If your doc isn't cooperative, well ... find one who is.
Hang in there. You can beat the beast.

--Jim in Delaware
(Stage III SCC right tonsil, one lymph node involved, one year out of treatment)

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

I Want to thank everyone for their support and suggestions on what I am about to face. I can already tell that this will be a valued part of my treatment and eventual defeat of this disease. I look forward to corresponding with everyone.

Kurt

naturenaw
Posts: 26
Joined: May 2009

Kurt - I just wanted to let you know that there is hope and lots of it!
I am FOUR years post-treatments and I also was stage 4 squamous cell carcinoma in tonsils and spread to multiple lymph nodes on both sides. I had surgery, max radiation (IMRT), and chemo and a tough time of it (I struggled with losing too much weight more than anything) but am here to tell you how great life is now! I get to enjoy watching my boy play soccer and my daughter maturing into a fine teenager in the blink of an eye and I know those 2 little boys of yours will provide you with many happy thoughts to keep you focused and getting through it all - there's lots of hope! I'm hoping the treatments will go easy on you. Take care!

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