Thanks Tess.

Violaob:  Hummmmmm, very interesting.

Tess:  I agree that you need to be soooo pro-active.  It takes ONE doctor to smile and say, Yes, lets try this.  Keep me posted.

My RFA is scheduled for January 5th.  I'll be paying for the surgery for the rest of my life.  I am preparing for the External Review with the New Hampshire State Insurance Commissioner.  It's a board of doctors, I was told and I have a 50/50 chance of getting my refusal reversed.


(13 replies, posted in Introductions!)

I found days when I was eager to search for information and then there was days I just took a break and had a "normal" day.  Don't let this research exhaust you.  Your Mum needs someone to cook her dinner, clean the bathroom or play a game of scrabble with her.  Chat later.

I was denied a RFA from the Blue Cross Blue Shield Anthem/Lumenous company.  The two denials are in writing and I'm now taking it to the next step - an external review by New Hampshie State Insurance Commission.  Has anyone been though one of these?  How was the outcome?  I have put together a preliminary packet.  I was told doctors make up this review and they do their own research, so make sure medical statements from my doctors are included, along with my own words.  Awaiting your input...


(13 replies, posted in Introductions!)

Marc:  I did have a liver resection last year.  My tumor was 9 cm. and it did invade the Infererior Vena Cava.  I was a good health.  No jaundice though.  I have recovered from the surgery.  It was a hard road.  I was very tired.  It took a year to get back to work full time.  I'm glad I did have surgery.  You didn't say how old your Mum is.  I was 57 last year.  My vote is for surgery.  The liver regenerates.  I had about 3 inches of my vein removed and replaced with synthetic material.  I'm on an asperin per day to keep the blood flowing.  This website is full of great information.  You will be in my thoughts.  I'll check back later.  Gale

I like good news.... no... GREAT NEWS..

I am going through with the RFA.  The hospital will get a monthly check for the rest of my life.  I think I will go through with the external review.  That way if we decided to sue in the future, we can.  I'm waiting for a date for the surgery.  I called the State Insurance Commissioner's office and she said that IF this external review rules in my favor, then the insurance company will reimburse me for the surgery.   Chat later.

I spoke with the hospital yesterday.  I'm going ahead with the surgery without insurance.  I don't want this density to grow to the point nothing can be done.  I'll just give them so much per month.  I will get in touch with my Senator to let her know about this.  I'm waiting for the hospital to get back with me with a date for the surgery.  Chat later.

Thanks so much for the encouragement.  I see the oncologist today.  I want to see what she can do to help.

I received my second refusal for Radio Frequency Ablation... ERRRR

Well, talking with the doctor at the insurance company didn't work, so the surgeon is taking it to the next level. Chat later.

THANK YOU for your responses.  I received an email from the surgeon and he received the news on Friday.  He has already put in for a review. From the wording of his email, he does this all the time.  Carol, I'm so sorry to hear about your situation.  I personally know our State Senator and I will keep that in mind.  I'll keep you posted.  Chat later...

I got a letter yesterday stating that the ablation was not approved by the insurance comapny.  Cholangiocarcinoma was not the the insurance doctor's "cheat sheet" for this type of surgery.  Hepatosecullar carcinoma, yes, but not cholangiocarcinoma.  I'll be making phone calls on Monday.  Since the doctor does this surgery once a week, he MUST run into this situation all the time.  I'll find out Monday.


(23 replies, posted in Announcements)

I received my brochures.  Thanks.  I'll try to get them distributed.  Our local clinic has a new cancer library.  Good place to display them.


(15 replies, posted in Chemotherapy & More)

Thanks.  I plan on calling the oncologist today.

Thank you so much for the encouragement.


(15 replies, posted in Chemotherapy & More)

I honestly don't remember the name. What do you know about Xeloda?  I just remember it will be a pill and I won't loose my hair and I'll be taking it for six months.  Need input..... Thanks in advance.


(15 replies, posted in Chemotherapy & More)

I had a resection and the doc team said no chemo because healing from a resection was plenty to deal with.  I'm healed now, 1 1/2 years later, and another tumor has started.  I will be scheduled for a RFA in December and chemo after.  Doc said it was a pill and I won't lose my hair BUT I can't remember the name of the pill.  Any answers on chemo pills would be grateful?

Sean, Neal and I met with Dr. Gemery Wednesday afternoon.  We saw the CTscans from April, May and October.  It's not scar tissue.  The tumor will be burned by the Radio Frequency Ablation surgery.  We talked about doing a biopsy but the tumor is small, so he's going to burn it either way (cancerous or non cancerous).  I will probably get a PET scan to make sure this is the only tumor.  It is very close to the inferior vena cava vein, so he said he may not be able to get it all.  I will undergo chemo after.  The surgery is laposcopic, so 1 possible 2 day stay in the hospital.  He said he tells his patients to take two weeks off, and if I'm feeling good I can go back to work sooner.  He does this surgery about once a week.  It will take at least a couple of weeks to organize the surgery.  I'm still hopeful with the fact the bloodwork all came back NOT ELEVATED.  I'm looking at this as a bump in the road.Up

The insurance is Blue Cross/Blue Shield, Lumeous.  It's a PPO (Preferred Physician policy). It's also a major medical policy.  Comes with a VERY high deductible, no co pays.  After the deductible is met, I've paid for nothing, including prescriptions.  It comes at a high cost also.  Work takes $178 out of my paycheck every two weeks.  Given my condition, I'm not complaining.  I've been getting bladder infections, one after another lately.  I hope this doesn't interfere with the RFA.  I'll keep you posted.  Chat later.

My insurance company does cover RFA.... YEAH.  I was told it's considered "experimental" but if the doctor deems it "medically necessary", it's covered.  My consulation is Wednesday.  My oncologist gave me a prescription for Lorazapam to help with the anxiety.  It still can be scar tissue!!  But I'm ready to hear what ever news it is. I won't know until a biopsy is done.  Chat later.

You have peaked my curiosity.  I'm calling my insurance company today to see if it covers RFA's.  Tess:  My tumor invaded my inferior vina cava.  I know many surgeons don't operate.  Sounds like your dad is very fortunate to have a daughter that is informed with knowledge.  Chat later.


(45 replies, posted in Hospitals)

My lead surgeon was the Director of Transplants for my liver resection in June 2007.  He told me that if this resection failed, I would be on the list for a transplant.  Having read the above information, helps me know that the surgeon/doctors involved in my cancer are capable and I'm comfortable in their decisions.