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Big Joe
Posts: 5
Joined: Feb 2014

Hello my name is Joe I am 50 yrs old and I have neck and head cancer,  Just got this here problem 4 weeks ago and dont understanded it!!!  Having a hard time dealing with it also,  I have it all over my body places like CHEST LYMPH NOTES, RIGHT RIBS 8TH AN 9TH LEFT RIBS 4TH AN 5TH, SPINAL VETEBRA T1, T5, T12 AN STERNUM (CHEST BONE) SACRUM (BOTH HIPS) If you could please help me leave a message.  Thank You an God Bless Joe

KTeacher
Posts: 891
Joined: Jan 2011

Did you just get diagnosed 4 weeks ago?  Are you reading your own PET scan?  Are you going to a comprehensive cancer center?  Sorry for the questions.  You will find information on the Superthread.  Info for before, during and after treatment.  Will you be having any surgery?  Chemo, radiation?  You will need to take notes at your doctors appointments, do you have someone that will go to appointments with you?  It sounds like you are in for a fight, we will be here to give support and encouragement.

hwt's picture
hwt
Posts: 1840
Joined: Jun 2012

Sorry that you had the need to find this site. Are you saying that you have head & neck cancer that has moved to the bones? Where is the primary? What sent you to the doctor in the first place? Are you being seen at a major cancer center? Cancer is a very scary thing. You are not alone in being scared.

Prayer are being sent your way.

 

Big Joe
Posts: 5
Joined: Feb 2014

Thks for your concern;  Yes I have head and neck cancer!!  The primary spot is on my left side of the neck and it spread to all those places I said!!  Cancer Center is Loyola univ cancer center very good doctor I have!!!  May I say thks for the concern any advise would help or your support thk you!!! Joe

Hondo's picture
Hondo
Posts: 5655
Joined: Apr 2009

 

First Welcome to the family, I know about Loyola Cancer Center and they are very good, so you will get the help you need there to deal with your cancer. On another note it sounds like you have more than just head & neck cancer if it has spread like that. Try and get a second opinion, the reason I say this is because when I started having pain in the neck a few years ago. One doctor said I have a tumor in my neck and the second doctor said I don’t have any cancer or tumor. Always get a second opinion. Glad to have you here with us and pray that everything works out for you.

 

God Bless

Hondo  

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

I'm assuming you've taken the first step, seen a Oncologist and had a CAT scan. Next will be a visit to see what your team has planned to treat the cancer, I advise taking someone with you, to take notes..you're not alone in " not taking the diagnose of cancer well". We have all walked in your shoes and are in various stages of recovery or just starting treatments.

Once, there's a plan, all you have to do, is relax and follow what you're told to do...please keep us updated and you'll find lots of help and caring on this site.

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Big Joe,

Where ever you have cancer, I wish you great luck in your battle and your recovery.  It is s fight many have won and you can do it.  Next up will be your treatment plan, don’t be afraid to ask questions or seek another opinion.  You want to give yourself the best plan available.

Matt

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Joe, I am praying your treatment goes well and you have a full trcovery. Keep us posted, we will be walking with you during this journey

Debbie

donfoo's picture
donfoo
Posts: 1164
Joined: Dec 2012

Hi Joe,

Welcome to OCF. You have found a great place to help offer first hand experience in dealing with HNC. If you can provide more detail about history and events and the current plans, we can help a lot more.

What have you been told, what is the actual diagnosis and staging? SCC, staging, HPV status, smoking/drinking, general health status, other chronic conditions, history, biopsies, scans, tests and results, second opinions planned, currently discussed treatment plan, curative or pallative paths, etc.

Based on what you have described so far, it would generally be classfied as M1 - distant metastisis. If that is the case then your cancer is quite advanced and your doctors should have pretty clear opinions and preliminary recommendation and options. Your case needs to be presented at tumor board to get more doctors to review your case.

NCCI Staging

Everyone gets scared and in a tizzy. It is really important to have someone else attend all doctor appointments to listen and write down what is being said. You are not in the best state of mind to catch it all and it is all very important to understand.

Please provide more info and we can help.

Don

debbiejeanne's picture
debbiejeanne
Posts: 2285
Joined: Jan 2010

joe, i'm so sorry that your news was not so good.  you already sound like you've given up, DON'T!  many of us here have faught the battle and WON!  YOU CAN TOO!  the first thing you need to do is get more info from your docs about the cancer and what the plan is to get rid of it.  you may want to take a hand held recorder with you to appointments so you don't have to remember all that is said, that will be hard.  another suggestion is to take someone to all appts with you.  2 sets of ears is always better than one.  it sounds like you've had a lot thrown at you with no understanding of whats to follow.  take a deep breath, think of all your questions and WRITE THEM DOWN to take to appt with you.  you will not remember the questions once you're at the appt so it is important to write them down.  you have enough on your mind already.  let anyone who offers to help you, help!  you don't have to do this alone.  friends can help take you to tx, go to the store for you, help you think of questions for the doctors, prepare meals for you when you're in the thick of tx and not feeling up to it, and anything else you need help with.  let friends help!  the road you are about to embark on is not a cake walk but it is VERY doable.  take it one day at a time and come here ofter.  bring all your questions and concerns or come just to vent, we don't mind, we're here to listen and help.  for now, slow down and try to calm your nerves.  you will get thru this and we will help along the way.  be sure to let us know when your docs have a plan for your tx.  we will be here to cheer you on.

God bless you,

dj

wmc's picture
wmc
Posts: 295
Joined: Jan 2014

Welcome to the CSN, and also sorry you had to be here. Just like everyone said take someone with you to all apptments. You will think you are ok but you don't always here all of what they are saying. You are in a state of shock and might not know it.  I had my wife even tape the meeting with some doctors and they were all fine with that. You can and will get some of the best advice from those who have been there and survived. Stay strong and try to eat the best you can now, because you will loose some weight. Take care and prayers are with you and your family.

Bill

Big Joe
Posts: 5
Joined: Feb 2014

Hello everyone'  Thks for your concerns and prayers I shure can use them wright now!!!  I dont no where to start never had to do this before so ask your questions and I will try to answer them.  Sorry if I soud lost but I am,  I dont know what questions to ask the Dr or how to answer yours so just ask and I will do my best Thank You and May GOD BLESS you all Joe

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Joe, do you have someone who can go with you to doctor and help navigate the paper work etc.? It is best to have someone who can go with you to your appointments because often the patient doesn't hear or remember everything and the person can write it down. Everyone is different, you will hear that a lot, but my husband Jim was unable to drive to his appointments and the pain meds made him sleep alot so having me there to drive him and keep track of his meds was very helpful. The super thread at the top of the page has a wealth of information. You will probably not need it all but I would suggest reading through some of it to get an idea of things that are helpful. And take advantage of any counceling help the treatment center offers.

Praying for you, Debbie

 

Big Joe
Posts: 5
Joined: Feb 2014

Hello Debbie;

How are you today Thks for the info I sure can use all the help I can get wright Know!!!  Please feel free to contact me anytime with any help thks joe

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