TGIF and Insurance Issues

I am so glad it's Friday!  Tired this week.  I think I've been staying up too late reading.  Also, my horse trainer is at a show so I've been going out to the barn most nights--which is OK because I want to spend more time riding anyway...

I received a call from Cara, Dr. Balnap's physician assistant (see earlier post about liver surgeon)  she said my insurance said that they consider him as "exclusive" but I think she meant to say "excluded"....  They will only pay him as an assistant surgeon at 20% and he wouldn't be an assistant surgeon!  So no 60% for out-of-network coverage.  I didn't know an insurance company could "black-ball" a surgeon...  I'm not surprised since Select Med is part of IMC and that is where he started the liver transplant program.  I'm still going to see him on Wednesday.  I just want to know what he thinks..  It did make me angry for a minute and then I got all frustrated with this stupid CANCER!  Why does everything have to be so difficult?  Why can't there be a "standard" treatment protocol?  OK. Enough of the negative!  I feel better now.

Here's my plan... go see Bruce B. on Monday (oncologists P.A.).  Talk to him about my options.  See what he thinks about Belnap and ask him about seeing a "specialist". I may even talk to their Patient Advocate to see if they can help me with getting the insurance to approve a specialist.  I'm thinking Dr. Liu at Vanderbilt University in Nashville.  They have this scan called a Gallium 68 PET that is not offered everywhere as I think it's still experimental.  It shows much clearer images of tumors, etc.  Better than the octreoscan.

Go see Dr. Belnap on Wednesday--get his opinion.

Then I'll probably just be waiting until next month to get my blood work done and follow-up scan in November.  If scan shows any progression of tumor growth or new tumors, go see a specialist ASAP. If everything is stable.... wait and worry!

Hope everyone is well and have a great weekend!

Insurance

I just check my insurance and I do have out-of-network coverage.  $1,500 deductible and then they pay 60%.  Not great but at least it's something... if I decide to have surgery.  I can also appeal if they will not cover it, if I can prove it's necessary.  Many options...

Liver Surgery Possible?

Sorry it has been so long since my last post.  There a two reasons. One, I haven't had anything to update. That is why this cancer is called "wait and watch" but I call the "wait and worry".  The 2nd reason is I couldn't figure out how to!  I was signed in under the wrong email address and it wouldn't let me create a new post!  Hahaha.  I'm not very technical. I did figure it out--obviously.

I do have something to update.  I went on a trail ride with my friend Ellyne.  She works at the hospital where I had my surgery.  I was giving her the "update" and I told her how they said there wasn't a surgeon in Utah who would remove my liver tumors.  She said she thought she new of one who had actually started the liver transplant program at Intermountain Medical Center but that they had gotten rid of him because he was a "cowboy".  By that, I think she meant that he was a bit of a wild card and perhaps unorthodox.  She told me his name so I planned on looking him up to see where he was practicing now.  I procrastinated on that and hadn't looked into him yet when I ran into another acquaintance who happens to be an anesthesiologist.  I'd wanted to talk to her since my diagnosis but hadn't run into her. She has a horse at the stable where I keep my Abbie.  Anyway, I saw her so I told her what I'd been through.  She told me that she worked with a surgeon who did liver surgery all the time!  It was his specialty.  Guess who it is?  The same surgeon.  Dr. Legrand Belnap is his name.  She asked me for my cell so I gave it to her.  She was going to talk to him for me but said he was on vacation this week.

I went home to look him up and of course, he works out of another hospital that is not on my insurance plan.  Sigh... I figured he wouldn't be since NO ONE had mentioned him to me!

I received a text from Julie, the anesthesiologist, yesterday and she said his PA was going to call me.  Wow.  it was only about an hour later when I got the call.  Very nice lady named Cara.  She said he did debulking and resection surgery on Carcinoid patients all the time!  He gets referrals from surrounding states and even from my oncologist!  I told her he (Dr. Belnap) wasn't on my insurance.  She said they could try and get it approved but that my insurance company probably wouldn't OK it.  I ask her to try to get them to for a 2nd opinion-type appointment.  She set me an appointment up for next Wednesday at 7pm!  Late clinic hours and he wants to see me last so we have plenty of time.  I have to go pick up my CD of the CT Scan I had done in June today so he can see it.  I'm a little nervous about it but I just want to see what he says. I know the insurance won't approve it but I have a couple of options.  I can appeal their decision with letters from doctors stating the facts--that removing 70% to 90% of the tumors can increase life expectancy by 10 years!  I can also wait until June and change my insurance plan for the new plan year starting July 1, 2013.  I could then have surgery.

I'm not really sure what I should do.  Should I have surgery when I'm feeling good, have no symptoms, liver function is normal?  Should I wait until things progress (if they haven't already)?  I will be asking many questions of Dr. Belnap I am sure.  I also have an appointment this Monday with my Oncologists PA, Bruce.  He is very smart and I have a bunch of questions for him!

I will give you an update after my appointment on Monday.

A quick update... I'm very happy to say that I've had no bad side effects from the Sandostatin LAR shot!  My oncologist warned me that some people do and that they can be quite bad... I did have a headache for about 3 days but it went away.  My symptoms have also abated.. diarrhea and heart palpitations!  So it is working as intended.  Now just hoping it stops my tumors from growing or spreading and with time, might evens shrink them!  Next shot is scheduled for the 20th...

Cost of Treatment!

Wow.  I called my insurance company to see how much the monthly injection of Sandostatin LAR was.  I about fell off my chair!  My oncologist told me it was $10,000 per month.  They charged $17,000!  This is per month, every month for the rest of my life (or for how ever long it works).  CRAZY... also, thank god for insurance and no "lifetime maximum"....

To date...

My diagnosis....

I thought I'd start a "blog" to let my friends and family know about my newly diagnosed cancer!  I'm not much of a writer so I ask for your forgiveness in advance.

I had my first screening colonoscopy on June 14th.  I didn't expect it to be more than routine.  When I woke up, I was in a great deal of pain and very nauseated.  That passed with some medication and I got dressed.  When the doctor came in, he sat down and told me they had found a large tumor in my small intestine, which was too big for him to remove.  He said he'd biopsied it but didn't think it looked like "cancer".  I should have asked him "why not" but I didn't.  He then told me he wanted me to go have a CAT Scan and some blood work, which they scheduled for the very next day.  

The CAT Scan went fine.  I did have to drink contrast so that was fun after drinking the horrible prep for the colonoscopy the two days before!  Ick... If you've never had a CAT Scan with contrast, they also give you an injection just before they start which makes you "flush" and it feels like you pee your pants!  Luckily, I had one years ago and was ready for it!  It's a very strange feeling.

Monday the doctor called me back and said "I'm so sorry but you do have cancer and it's spread to your liver".  Well, to say the least, I was devastated.  Those of you who know me, know that my mom, Norma, died from liver cancer very quickly (we're sure it was from her colon cancer but they could never biopsy it).  He told me it was Carcinoid, which is rare but not much else.  I did the Internet search that afternoon and read a lot.  Yes it's rare and it's slow growing (usually).  These tumors produce hormones, mainly serotonin, which can wreck havoc with your other organs, including your heart.   I did have an echo cardiogram and my heart is just fine :)...  the hormones produced by these tumors can cause what is known as "carcinoid syndrome".  I had only been having one of the symptoms, diarrhea, which is probably why I hadn't gone to the doctor earlier-- I thought it was from not having a gallbladder--and we're still not sure.  

They had already set up an appointment for me with a surgeon the day I had the colonoscopy.  It was scheduled for Tuesday, June 19th.  Things were moving very quickly.  I'm not sure if it was the fact that I'd told them my insurance was changing on July 1st or the fact that I had CANCER!  Either way, I was glad.  

To make a long story short, I had surgery on July 2nd (yes, after fight with new insurance company for approval but that is another blog).  Surgery went very well.  They removed part of my colon, cecum, ilium (small intestines) and appendix.  They would have removed my gallbladder as well since the treatment causes gallstones but I had mine removed years ago.  I actually had 11 tumors in all.  10 in the small intestines ( I think they were all grown together) and one in my appendix. 11 of 13 lymph nodes were also positive for cancer. They also biopsied some in my liver.  All came back as expected, which is technically now called well-differentiated neuroendocrine carcinoma.  That's a mouth full so I'm sticking to Carcinoid!  Same thing...

Treatment..... I'm seeing a great oncologist at Utah Cancer Specialists, Dr. Jonathan Whizenant.  While not a Carcinoid Specialist, (there isn't one in Utah) he is very knowledgeable about it and treats most of the "Noids" here.  This cancer doesn't really respond to general  chemo since it is slow-growing and most chemo targets (kills) fast-growing cells so at least I don't have that to look forward to!  The treatment right now is a monthly long acting shot called Sandostatin...  It last 28 days and blocks the tumors from producing those pesky hormones that I mentioned earlier.  It also has been shown to slow and even stop tumor growth in some patients.  I had my first shot on July 23rd.  I haven't had many side effects.  Some people have worsening diarrhea, abdominal pain, nausea, etc.  I had a very sore butt and leg that night but it was fine the next day.  I did have a headache for a couple of days but it's gone now.  I'm hoping I don't get anything worse.  My doctor said it can be immediate or take a couple of weeks.  

My next shot is scheduled for August 20th.  The hardest part right now is waiting.  We will re-scan and do the blood work in October or November.  Doc said November but I'm not sure I want to wait that long!  I know a month probably won't make a difference but the waiting right now is the hardest thing ever!  

Next steps...  some people do great on Sandostatin for years.  they have no tumor progression or spread of disease.  If things progress, there are other treatment options available.  Right now, I'm hoping the shots work and this will be more like managing a auto-immune type disease--almost like diabetes.  There are also new advancements in treatments being made all the time.  There are some great clinical trials going on now in Europe.  Who knows what the next few years might bring!  My goal is to stay positive, take good care of myself and try not to worry too much!  

If you would like to read more about this type of cancer go to www.carcinoid.org