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BKSANDERSON

 Hello.  My Name is Bruce. I am 61 years old and presently live in central Indiana. Last week I was informed that I have at least stage three throat cancer. I am still waiting on the results of a biopsy and PET scan. I, of course, am a bit nervous as I do not know what to expect in the future with treatment. Spiritually I have no problem passing on, but we now have guardianship of our 14-year-old grandson who was having all kind of problems in Texas and has now over the last two years made a remarkable turn around and has even made the A-B honor roll; I would like to at least get him through high school. I am in Indiana now because I just found my now 84-year-old mother, 15 years ago, and moved here to get to know her. Three years after moving here her husband, a 15-year cancer survivor, passed away leaving her with no one else but me. On his death bed I promised him that I would not leave her alone – though now I desperately do want to be with my children and grandchildren in Texas, and of course, she refuses to move.  My mother had a husband in the past die of Huntingtons and two sons who killed themselves when they found out they had it also. I really would like it if she didn’t have to bury another son. So for my wife, grandson, and mother, it would be nice if I could be here a bit longer. I have done some reading, maybe too much, and am just looking for some positive things to hang onto.

 

CivilMatt

welcome

BK,

Welcome to the H&N forum, sorry you are here.

You certainly do have a host of priorities; just take them one at a time

To say you have throat cancer is fairly broad, i.e. I had base of tongue cancer. Unless it truly is your throat it is probably a more specific location.  Treatments for head and neck cancer are commonly surgery, radiation and chemotherapy.  Most of us have one, two or all three of the treatments.   It is scary and rough but many have gone the road before us and they made it and so can you. 

With a little luck all of your priorities will be served.

Good luck,

Matt

phrannie51

Hi BK....and welcome

to our little home away from home.  I'm sorry you had to find us, but I can assure you, you've found a great place for knowledge, support, and positive people.

It's natural to be scared, especially when you're still in the wait and see mode....waiting to move into to treatment was the scariest part for me, anyway. 

It seems you are feeling pulled in two directions...stay in Indiana with mom, or go home to Texas to be with your children and grandkids.  This I can tell you....you are most likely going to need some help during treatment....help for you!  How is mom's health?  Is she drving?  Is she able to care for you?  It might be beneficial for you to talk to her, and see how she'd feel about moving to Texas temporarily....so you can be around your own kids, the caretaking can possibly be spread around.  Also, depending on where you live....Texas has a few of the very best cancer hospitals in the world.  The chances are....you are going to ge through this....minus some spit and some tastebuds....but generally back to yourself within a few months after treatment is over.

Hard as it is to do....I think you've got to put yourself first for the time being as it sounds like there are people who depend on you...your grandson (congrats on his turnaround!!)....and your mom. 

p

PS...Quit reading the internet.....it'll scare you to death.  Too much is out dated....every single day new stuff is cropping up....there are MANY survivors here....stick close, and we'll help you get through this.

wmc

Welcome to H&N group

Welcome to the H&N group, but sorry you need to be here. The others have covered it very well. Unless you are really good at research, and know which sites are up to date it is better not to Google. You will land on wrong, out of date, and some that is so off the mark. Head & Neck covers so many areas, from the brain to everything to the esophagus, which is different. The term throat also covers mant area as well. Mine was laryngeal cancer, SCC  in the supraglottic [just above the vocila cords] and hitting the left true vocal cord and stopping it's function. T3; N0; M0; [ T=Tumor; N= nodes; M= metastasized]. which is stage 3. Just befor surgery it was thought to be T4;N2;M0, but I got lucky and it was not as bad as thought. They did a neck dissection on both sides and remover a total of 86 lymph glands [Nodes]. They did surgery and removed my larynx, and glands, but I never had chemo or radiation. I have other health issues so my treatment was different than most, bad lungs.

Being a little scared is very normal as just the word Cancer from a doctor will really shake you up. You will have many questions for your doctors, so write then down and leave room for answere, then just hand it to your doctor. You will ask a question, and he will anwser and it will throw you, and then you go blank.

Survival for this is really good, but it is the second hardest to go through. You will do better if you have someone to drive you and go with you to the doctors. Most likely; you will have radiation and chemo. Might have some surgery as well. The chemo and radiation can knock you on your butt. I do always recomend having a second opnion, unless you went to one of the top 10 hospitals. Do not go local. you need to go to the best place you can, and you will want help to care for you. You are torn between your Mother and your children, I do understand. Just dont forget, you won't be there for any of them unless you fight and beat this, which you can. You are fighting for your life, and it will be one rough fight. Going through radiation and chemo effects everyone different, as some have it much worse than others.I will include a list of Nationally ranked hospital, and it really does matter. My local hospital is ranked as the #2 in the central valley, and though of very highly. There Oncology is considered as one of the best, but they have no National rank, and there survival for cancer is 1/10. I went to Stanford ranked #9 in ENT and #10 in cancer with a survival of 9/10. Also my local top rated oncoledge doctor told me I do not have cancer so don't worry. He did blood work and looked at symptoms. Now if he would not have been so wrong, I night still have my vocal cords. You will not be alown in this as this is the best support gouup you can find. Just take one day at a time, drinl lots of water and stay hydrated and sip often it helps swallowing often. Will add you to my prayer list. Remember we're open 24/7 for support.

http://health.usnews.com/best-hospitals/rankings/cancer

I do recomend reading the Superthread (Read Only) at the top of the board.

Bill

tomb247

Welcome

Welcome to the group.

A lot of great people and information here.

You will get through this. The support offered here is invaluable. Better information here than just googling blindly.

One step at a time and don't hesitate to ask questions. Someone here knows what you are dealing with and wildl be able to give you spot on information.

Peace,

Tom

BKSANDERSON

God Bless and Thank you all.

Thanks everyone!  All the concern is touching and the info is definitely appreciated. Tuesday I have an appointment with the ENT and I suppose that is when I will find out exactly what cards I have been dealt. Thursday we are set to meet with the chemo and radiation people. As far as going to the best hospitals, my insurance as an IBEW construction electrician, which would allow that, will run out in June, so everything is being set up with St Vincent’s Hospital Network where my wife is employed as a Cardiac and ER RN, and whose insurance I will end up on when mine runs out. Not sure it was the best thing to do but we were concerned about possibly in a few months having to switch horses in “mid-stream”. It has been a bit overwhelming trying to navifgate this as novices. Though Indianapolis University Hospital here, where Lance Armstrong and my deceased stepfather – a 15-year survivor of bladder cancer - were treated, has an outstanding cancer center, with my wife's insurance we are only allowed to use doctors and facilities that are in the St. Vincent’s network or we will have to pay a lot of extra money which we do not have.

 

wmc

BKSANDERSON said:

God Bless and Thank you all.

Thanks everyone!  All the concern is touching and the info is definitely appreciated. Tuesday I have an appointment with the ENT and I suppose that is when I will find out exactly what cards I have been dealt. Thursday we are set to meet with the chemo and radiation people. As far as going to the best hospitals, my insurance as an IBEW construction electrician, which would allow that, will run out in June, so everything is being set up with St Vincent’s Hospital Network where my wife is employed as a Cardiac and ER RN, and whose insurance I will end up on when mine runs out. Not sure it was the best thing to do but we were concerned about possibly in a few months having to switch horses in “mid-stream”. It has been a bit overwhelming trying to navifgate this as novices. Though Indianapolis University Hospital here, where Lance Armstrong and my deceased stepfather – a 15-year survivor of bladder cancer - were treated, has an outstanding cancer center, with my wife's insurance we are only allowed to use doctors and facilities that are in the St. Vincent’s network or we will have to pay a lot of extra money which we do not have.

 

Indianapolis University Hospital

UI Hospital

They Rank #47 in the nation for cancer, and not ranked for Ear Nose & Throat

http://health.usnews.com/best-hospitals/area/in/iu-health-academic-health-center-6420020/cancer

St. Vincent Hospital and Health Center

They rank #35 ENT  Not ranked on cancer

This will have many advantages with your wife being there as she will know the Doctors and nursing.

http://health.usnews.com/best-hospitals/area/in/st-vincent-hospital-and-health-center-6420715/rankings#adult-performance

 

 

 

phrannie51

BKSANDERSON said:

God Bless and Thank you all.

Thanks everyone!  All the concern is touching and the info is definitely appreciated. Tuesday I have an appointment with the ENT and I suppose that is when I will find out exactly what cards I have been dealt. Thursday we are set to meet with the chemo and radiation people. As far as going to the best hospitals, my insurance as an IBEW construction electrician, which would allow that, will run out in June, so everything is being set up with St Vincent’s Hospital Network where my wife is employed as a Cardiac and ER RN, and whose insurance I will end up on when mine runs out. Not sure it was the best thing to do but we were concerned about possibly in a few months having to switch horses in “mid-stream”. It has been a bit overwhelming trying to navifgate this as novices. Though Indianapolis University Hospital here, where Lance Armstrong and my deceased stepfather – a 15-year survivor of bladder cancer - were treated, has an outstanding cancer center, with my wife's insurance we are only allowed to use doctors and facilities that are in the St. Vincent’s network or we will have to pay a lot of extra money which we do not have.

 

I feel for you losing....

the IBEW insurance.  I had it for 13 years, and ran out last August.  I miss not having all those "choices" that our insurance covered....MDA for instance.  I was free to fly down there for treatment with a caretaker with a $5000 allowance for flights and living expenses.  Ah....those were the good old days.

p

MrsBD

Welcome

This group will be a valuable resource for you and I'm glad you found it before your treatment starts. You will find advice, support, and prayers from people who have been down this path ahead of you. No matter what course of action you choose, someone here will have had a similar experience.  Stop in any time.

BKSANDERSON

I now finally know the hand that I have to play

Found out today that it is actually stage four squamous - he said there is very little diffeence between stage 3 and 4 - AND.... also found out, praise God, that the PET scan shows that it has not spread to any other places. The doc was very positive and expects it to be cured. Now to meet with the chemo and radiation folks, as we are opting, and he agrees, against surgery at this point, and get this over with. Thanks again and I will be still listening to everyone here.

BKSANDERSON

phrannie51 said:

I feel for you losing....

the IBEW insurance.  I had it for 13 years, and ran out last August.  I miss not having all those "choices" that our insurance covered....MDA for instance.  I was free to fly down there for treatment with a caretaker with a $5000 allowance for flights and living expenses.  Ah....those were the good old days.

p

Where did you work under an

Where did you work under an IBEW agreement?

BKSANDERSON

I have repeatadly tried to

I have repeatadly tried to upload a picture of my beautiful self but for some reason it nevers makes it here.

Hondo

Welcome to CSN H&N

Sorry to hear all the problems you been having but rest for sure you are now in the best place to get answers to your questions. For many of us just click on our name and it will pull you up to our all about me page and see what we went through getting to where we are today. The treatment for cancer today is far better than it was just a few years ago, and the survival rate is a lot higher, so get forces on your treatment and plan to live. I am 60 and I don’t plan going any place soon, I due do a lot more praying then before as it helps my faith grow stronger.

 

If you like visit my web-site and read my story about people like us  http://www.restoringgodstruth.com/prison/

 

God Bless

Tim

Barbaraek

BKSANDERSON said:

I now finally know the hand that I have to play

Found out today that it is actually stage four squamous - he said there is very little diffeence between stage 3 and 4 - AND.... also found out, praise God, that the PET scan shows that it has not spread to any other places. The doc was very positive and expects it to be cured. Now to meet with the chemo and radiation folks, as we are opting, and he agrees, against surgery at this point, and get this over with. Thanks again and I will be still listening to everyone here.

Welcome BK

So glad to hear that the PET had encouraging results for you. Is it throat cancer, or is there a different tumor site such as base of tongue, tonsil? Although we all fall under the "Head and neck" category...sometimes the treatment will differ based on the exact location of the cancer.

Surgery was not an option for my husband since it was a nasopharyngeal tumor and thus in the middle of his head and not accessible. Chemoradiation was our route. You will find lots of info here about the side effects of chemoradiation - what to expect and how to manage the side effects. It is truly a difficult journey...but many here on the board have traveled it and met NED (no evidence of disease) afterward. Your doc should be positive - results are improving from the old data you will find online. Here you can see members who have survived and are several years post treatment. Feel free to post questions, seek support and vent when you need to. You'll be in my prayers.

Barbara (who also happens to be a BK!)

the_wife

BKSANDERSON said:

I have repeatadly tried to

I have repeatadly tried to upload a picture of my beautiful self but for some reason it nevers makes it here.

Hi Bruce

Welcome to the H&N thread. Hopefully you'll be a member of the NED club soon! Did you find out where your cancer actually originated or did I miss something? My hubby had stage 4 SCC tonsil cancer and was treated with 7 weeks of chemoradiation. 

This site is a bit clunky - I tried in vain to post our story in the profile section, but it doesn't upload. Try contacting CSN - there's a link at the upper righthand corner of the page. They should be able to help you post a pic. 

 

donfoo

welcome

Hi Bruce,

Nice you found a place for great support and practical experiences. We are not medical professionals so you need to follow the options your doctors offer. One thing to seek out is getting your case heard before tumor board. This is where many medical professionals hear your case, discuss, and weigh in with their opinions and recommendations. Try to attend and you will likely leave with your head spinning but one think you will take away is the collective wisdom and experience in that room outweighs what you may think.

Quite a few folks seek second opinions and that is great if that can be arranged. If that second opinion comes from another tumor board, at at point rest assured you've got a huge amount of professional review and the options are pretty well what fits for your situation.

Everyone's case is unique so do not get swayed toward any of the mentioned treatments you have read here. You need to keep an open mind and wait until you get the final options on the table. If you are not clear, ask, ask, and ask away, until you understand it all in details and you are comfortable with the treatment plan you follow.

Check in often and ask away here to as there is always someone who can offer something.

good luck,

don