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From My Blog I started today...............

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

After reading all afternoon I realize I am on a journey of undetermined endourance. I have had sinus problems all my life. Get a couple three sinus infections a year like clock work. Three or four years ago I had a small benigh polyp removed. Two years ago I started to have nose bleeds. Nothing unusual as I have always blead out of my nose easy. Then about 18 months ago I began to have visions problems out of my right eye. The sent me to a eye specialist who said I for some reason was having some blood leakage behind my eye. He started giving me eye injections which are still ongoing. Six months ago my nose got stopped up real bad. Dr. gave me meds. It did not un stop. He checked and turned out I had a blockage from the poylp. Took several months to get the Ok to remove it from my heart doctors. They wanted to do tests first. Well last Wednesday they operated and removed the poylp. I found out today it is cancer. I see the ENT Dr. tomorrow afternoon (Wed.). I now think it was all tied together. Man I have questions now. I have a Health Spring Advantage HMO plan. I wonder what it will cover at a Cancer Hospital and Drs.? I wonder if the cancer has spread to the brain or any where else? I wonder if they will do a MRI or a Pet Scan? I suspect the cancer has a two year head start. I am 61. Got remarried 5 1/2 years ago to a wonder lady. Life was finally really good. Nurse said the Cancer was a type of melanoma. The Dr. told my wife last week that it was stretched all the way up to the bone below my eye and that he had to scrap it off the bone. He thought he got it all. He told me in recovery he did not think it was cancer. But he did say it grew fast and was aggressive. That word aggressive worried me all weekend. It does not look good. I suspect I have some version of ONB. I live near Tyler/Longview, Texas. I hope this makes sense.   DougNTexas51@gmail.com

Ladylacy
Posts: 509
Joined: Apr 2012

Am so sorry to hear about your health issue.  My husband has a recurrence and we see the specialist on Thursday to go over a treatment plan.  Head and neck cancer is one of the hardest to go thru as far as radiation.  My husband has been thru 70 rounds of radiation a little more than 1 1/2 year apart and we know that he can't have any more.  He just finished his second round in July and had his second PET/CT scan last week and now we are dealing with a recurrence.

As far as your insurance, my husband has Humana Medicare Advantage PPO.  We have had some troubles in getting certain things paid for.  I am having to protest for his nutrition for his feeding tube, his other supplies and even the PET/CT scan he had in September that they approved before the test was done.  They did pay for it and put it down to a coding error on their part. ANd so far I have always won.  Guess they don't expect me to protest.  Have thought about getting a Medicare Advocacy to help but so far haven't needed one.   As far as his radiation and chemo, we had a co-pay for everything.  Just make sure the centers and doctors you use are on your HMO plan.  With a PPO we aren't limited like a HMO as to where he gets treatment and as long as the centers and doctors are on the plan, we have no deductible, only co-pays.   REMEMBER:  Each plan is different depending on where you live, just be sure the doctors and centers are on your plan.  And if you aren't happy with the ones near you, you might want to check into other places as long as they take your insurance.  Always good to get a second opinion too.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Well, the good thing from what I gather, is nobody has done a biopsy as of yet, and told you conclusively it's cancer..unless I missed that somewhere.

Well, actually I'm not sure...you should know by now if it's cancer I would presume... The nurses comments are just comments as far as I know. The MD said he scraped it off, but didn't think it was cancer...(didn't he do a biopsy of what was scraped)...?

More than likely I would presume you would have a PET, not sure with your insurance and MD's...

Knowing what I know now, I would ask the MD that did the scraping if a biopsy was performed..., as far as I know, biopsy of tissue is the only definitive way of determing cancer.

Sooo, hopefully maybe you won't have cancer, and what ever is going on can be treated less aggressively than chemo or radiation.

Best ~ John

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

One step at a time and hopefully you will have great confidence in your team of doctors. My theory is to take things as they come and deal with them. Sometimes easier said than done but needless worry uses too much energy. Holding good thoughts for you!

 

Candi

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

The Nurse told me yesterday on the phone that the biopsy was cancerous. I have had eye problems for 18 months. Been getting shots in my eye. I now think the eye problem is connected to the cancer.

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Wish you were not having to go through this, but glad you found this support forum.  The good and caring people who post here are an awesome source of support and experience.  I learned something from your blog today.  Your mention of ONB was an acronym that I had never encountered so I searched online to find out more about it.  If what you suspect is right, then your situation is a rare one.  For anyone else interested in ONB, you can read about it in this article...  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2811627/

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

You'll get more response this way. 

Most of us went thru at least a couple of months of antibiotics etc, before we actually saw an ENT with cancer as a suspect.  Since the Dr. said this is aggressive, then you probably haven't had it for a long time....tho with all your sinus problems, you might have had the perfect storm brewing for a long time.

Until you have a PET or a contrast CT, the extent of the tumor can only be guessed at.....I know it's not easy waiting to find out exactly what you're looking at for future treatment. 

One thing for sure....you've hooked up with a wonderful group of people here.....supportive and knowledgable....they saved my bacon when I came last March quaking in my boots....

p

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

for the kind words Phrannie51. I am counting the seconds til tomorrow.

katenorwood
Posts: 1853
Joined: May 2012

DougNTexas,

You will be run through the wringer shortly.  Did they confirm ONB ?  You can ask at your appointment exactly what type of dx you actually have.  I always asked for pathology reports also.....and made my oncs. explain every detail on them.  Boy I hate it when in the begining they use the word aggresive.  No matter what head and neck cancers stink......but so many on board here will get you through the bumps in the road you will encounter !  I have adenoid cystic carcinoma, also a rare cancer but slow growing.... one that will come back eventually.  They use the term insidious alot to me.  Nice hunh ?  Please keep us updated, and again welcome aboard !    Katie

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

I will find out tomorrow. Least I guess I will. I have all the sympthyms of ONB, but no I do not know yet.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Well I'm so sorry you had to join our little group but we welcome you with open arms!
Please try and relax a bit and know that treatment has come so far and is so successful. I wouldn't worry about having HMO insurance and what they will cover. Many of us have HMO's and have had perfect care and treatment. HMO doesn't have the stigma it used to have years ago. The law (here in California) does not allow discrimination of any kind as far as treatment goes. You will get the same treatment that a person with private or PPO ins has. The only difference may be that you may have to go to a certain facility then some others go to. Not in my case tho, there were all types of insurances coverages where I went.
I have never been denied any test or procedure that my Dr's have requested.

After you have your PET scan you will know more and have a plan of attack. Keep us posted and ask any question you might have....nothing is silly or stupid to ask.

Take care and take a deep breath.
Billie

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

Taking any breath right now is tough, lol. In more ways then one. 

bjohn
Posts: 17
Joined: Oct 2011

I do not post often but I started reading this board for suggestions when my hubby was diagnosed in  2011 with ONB. It is very frustrating with a rare tumor because there is very little standardized treatment. I have learned a few things along the way I can pass on if per chance your turmor does come back with this diagnosis. There are many other diagnosis out there so you never know until the results come back.  Good luck and hopefully the best news possible tomorrow.

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

 The mind does some crazy things to You sometimes. Thanks for the kind words.

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

Hi Doug,

 

I am sorry you find yourself here, but want to remind you to wait until all the reports are in so you know exactly what you have.  Don’t borrow trouble, you have enough on your plate.

 

Good luck,

 

Matt

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I would go to my Social Security office right away and see if you are eligible for Disability. Most head and neck cancers qualify for immediate benefits for 18 months. If you qualify for disability benefits, you should be able to get Medicare which will pay for 80% of your medical expenses. Also, if you are allowed to get medi-gap insurance, that will pick up the remaining 20%. It's well worth looking into.

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

George I lost all my hearing in my left ear with the measles at age 5. The I worked 27 years as a Locomotive Engineer for a private company here in Texas. Pretty much lost most of the rest of my hearing doing that. I am now on SS already. Good thing is that all this treatment will not make my hearing any worse.

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

My Mother used to say Do not borry troubles all the time. LOL i still need to work on that some more. thanks. You are right about the plate looking mighty full right now.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Sorry you find youself here ...but one advice many, inlcuding me, will give and it is the hardest advice to actually do...don't sit and well in your mind on all that coulda, woulda or may be bad.  Soooo much of what you are about to go through is a waiting game.

And so you are hot lying awake at night or sitting in front of the tv and only thinking aobut the woulda, coulda or may be...get involved in reading the literature they provide at the treatment centeron things like radiation, begin stockpiling the things you will need, a great source for advice / help is not just us, but also check out medical articles on the oral cancer foundation /  www.oralcancerfoudation.org ...lots of good stuff there too. 

 

Be sure and read through the superthread, and when you finally do get your results and your team of docs presents a plan..be sure and take great notes and be sure and speak up and ask questions like WHY this and not that or what are the pros and cons...be very engaged.  Get 2nd opinions if you do not feel good with hte team you get.

It wil be a tough ride ...but at the end you will come out healthy, wiser and more appreciative of life and along the way you will make some ggood friends on this board who will hang in there withyou when you are up, down or just plain sideways..share it all....becasue we have all been there my friend.

Tell the wife hi.

Best,

 

Tim

 

NOTE:  Whispered a prayer for strenght, wisdom and wellbeing for both you and your wife as I hit post

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

life is a challenge isn't it. And yes, Darla is a pretty wife. Thank You.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Welcome Doug and Darla.

Can't add anything but a welcome to all of the other posts.

Thinking about  you today and hope that you will find some answers and direction.

Once you have a plan in hand, it will make things a bit easier to wrap your head around all of this.

DougNTexas's picture
DougNTexas
Posts: 15
Joined: Jan 2013

I went to the Dr. today. He said my polyp was NOT cancer, but that it was not totally benigh either. Kinda pre cancerour. I am over joyed. He said I will be seeing him for a long time to come, but NO cancer so far. I am speechless. The Nurse must have jumped the gun when it did not say benigh.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

WOW, great news for sure.  

Definitely you will need to keep a close eye on things, but it sounds pretty good so far.

(I would fire the nurse who scared the **** out of you.   There is no excuse for that happening.)

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

I heard it from here! Good news!

"T"

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

That was my reasoning on asking you if the MD confirmed cancer, or it was just the nurses comments..... Until my MD's tell me it's something, it's not...

 

Awesome news..

Best ~ John

katenorwood
Posts: 1853
Joined: May 2012

A huge high five goes out to both you and that wife of yours !   I am so over joyed !  Pre-cancer is doable....and just keep on top of it !  Please visit us still, you are a very uplifting and wonderful guy !  Will be thinking cancer free forever and a day for you !   Katie    Surprised

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

I'm going to have to dance you around the kitchen!!!  This WONDERFUL!!  And.......

It's another lesson in "it ain't cancer till the Dr.'s SAY it is cancer".....that nurse ought to have her wings clipped!!

p

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

oh what many of us would give to get that on this board....but of course we are delighted you did and well deserved!!  Now you and Darla can take a step back and see if the sky is actually a bit more blue and the grass just a bit more green ...I bet it is....

Keep us posted ...and again, congrats!

Best,

 

Tim

PS  you might want to put that up as a new thread so all can see your great news....  :)

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

What wonderful news Doug ! It doesn't get much better than that . How terrible that the nurse caused you and your wife all that worry . I hope you told the Doctor what she said. Now y'all can go back to enjoying your life .  Stay well , Peggy n Texas too !

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