Topic: Radiofrequency Ablation is in the cards for Gale918

Hello all.  I saw the lead surgeon who did my liver resection and he feels the CTscan is not scar tissue but a tumor starting to grow.  His team of doctors are meeting on Tuesday, to discuss my case and he's sure a liver biopsy will be performed followed by Radiofrequency Ablation.  Burn that tumor!!! Anyone with experience, please let me know, as I need input!  The web had some good information.  I read that radiofrequency ablation can be performed many times, as tumors grow.  I'm in wonderful health, the doc said.  He even pointed out that my weight is up.  Risks are low.  He said it should not harm the synthetic material that replaced my IVC (which is where the tumor is located in the liver)  My game plan is go for it.... I've gotten this far and I'm standing on my two feet and smiling.  Thanks for letting me share.

Re: Radiofrequency Ablation is in the cards for Gale918

Hi Gale, Charlie had RFA in April this year.  It went really well with just an overnight stay and he bounced back pretty quickly too.  It was completely successful and they burned 1 tumor, but at the same time found other tumors they had not been aware of and that were too big for RFA.  I hope everything goes great for you.  Let us know.  Burn that tumor!

Carol

Re: Radiofrequency Ablation is in the cards for Gale918

Gale, I also meant to mention about insurance for RFA.  We're still fighting a $15,000 bill for it.  The doctor said he got it approved, but when the bill came in, our insurance said they wouldn't pay it.  So be careful.  It's so draining having to fight the hospital and the insur. company.  I hope you won't have any problems. 

Carol

Re: Radiofrequency Ablation is in the cards for Gale918

Carol158:  I've had no problem with insurance so far.  About $11,000 has been out of pocket, but I made arrangements with the hospital and I've had no problems.  Thanks for letting me know.  I have questions about RFA.  1.  Once you have a RFA, does that part of the liver regrow?  I've read where the docs can repeat RFA.

Re: Radiofrequency Ablation is in the cards for Gale918

Hello Gale, I've just started asking about the potential of RFA for my Father. I thought it was odd that one of the first things the nurse mentioned was the issue of insurance- suggesting to me that it's been an issue in the department before. I also heard back from Sloan-Kettering this week, that RFA is not an option for Dad because of the size & of the mass and proximity to a major vessel.  However, as an aside, below is a link to Sloan's Dr. D'Angelica. He may be worth contacting for a second opinion or with questions. Sloan was very accommodating in reviewing my Dad's imagery & paperwork. D'Angelica's bio reads:

"I am a surgical oncologist with expertise in surgery of the liver, bile ducts, gallbladder, and pancreas. I am currently interested in developing new and innovative ways to treat liver tumors with non-surgical techniques such as radiofrequency ablation (uses heat to destroy tumors) and cryoablation (kills tumor cells by freezing them). Additionally, I am interested in developing minimally invasive (endoscopic) techniques in hepatobiliary surgery."

http://www.mskcc.org/prg/prg/bios/708.cfm

Good luck!

Re: Radiofrequency Ablation is in the cards for Gale918

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.

7 (edited by tiapatty Mon, 17 Nov 2008 15:53:10)

Re: Radiofrequency Ablation is in the cards for Gale918

Once again I am amazed at how smart and on the ball everyone on this board is--it's a very complicated cancer and, with the exception of a few, none of us are medical experts. If it's a question of intelligence and diligence, we will one day beat this cc!

I am encouraged by Dr. D'Angelica's approach since I think older patients or those with other health problems are weakened by more conventional treatments. Go Dr. D'Angelica!

Patty

Re: Radiofrequency Ablation is in the cards for Gale918

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.

Re: Radiofrequency Ablation is in the cards for Gale918

Yeah! That is such good news. Let us know what happens with your Wednesday appointment.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Radiofrequency Ablation is in the cards for Gale918

Great to hear about your success with the insurance company.  If you don't mind asking:  Which one is it?   Still crossing my fingers for "scar tissue" but am looking forward to your report after Wednesday.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiofrequency Ablation is in the cards for Gale918

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.

Re: Radiofrequency Ablation is in the cards for Gale918

Gale,
Good news about the insurance. Please let us know how it all goes. I am thinking very positive thoughts for you. And please forgive me, I cant help myself....Burn baby, burn. Healing inferno.  (off to go hide in shame and embarrassment)

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Radiofrequency Ablation is in the cards for Gale918

Gale...we had the same insurance company as you and not nearly did we have as much success  as you have.  Have a great Thanksgiving.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiofrequency Ablation is in the cards for Gale918

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

Re: Radiofrequency Ablation is in the cards for Gale918

Gale

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiofrequency Ablation is in the cards for Gale918

Thank you so much for the encouragement.

Re: Radiofrequency Ablation is in the cards for Gale918

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.

Re: Radiofrequency Ablation is in the cards for Gale918

Gale,

Ooh, this makes me so mad! Hit 'em where it hurts!

Patty

Re: Radiofrequency Ablation is in the cards for Gale918

That's crazy - you either need it or you don't.  What difference does it make if it does or doesn't fit into a neat little category for the insurance company?  It really is a challenge for us to have this orphan cancer.

Re: Radiofrequency Ablation is in the cards for Gale918

Gale, let me know if I can help out in any way.  We're still fighting the bill for the RFA Charlie had done in April this year.  We were told it was approved by the doctor, had it done, then BC said it was never approved and of course, no one wants to help resolve it.  They just want us to pay it, which WE ARE NOT GOING TO DO!  I've had to get my local Senator's office involved (Sen. Richard Burr). There is a health constituent advocate in his office and she's been very helpful - also she's a cancer survivor herself so she is not pleased with how we're being treated.  Maybe something will be resolved by next April.  I think all the Senator's offices have these advocates if you need to go that way.  I've also threatened media, etc., but I don't really want to put our family through all that.  I hope it won't come to all these extreme measures for you.  I hope you get to sail right through and have it done.  Wishing you the best.

Carol

Re: Radiofrequency Ablation is in the cards for Gale918

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...

Re: Radiofrequency Ablation is in the cards for Gale918

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

Re: Radiofrequency Ablation is in the cards for Gale918

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

Re: Radiofrequency Ablation is in the cards for Gale918

I'm so sorry Gale.  When first diagnosed, after researching, we had this whole big list of possibilities. In our case, BC won't even pay about half of them.  So insurance is really limiting quality of life.  I wish something could be done about insurance companies.  Keep fighting.

Carol

Re: Radiofrequency Ablation is in the cards for Gale918

Gale,

I also am so sorry to hear this. The insurance companies have become big business. You pay all your life & when you need them they aren't there for you. They will find any excuse not to pay! It is so sad & so unfair. Don't give up!

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.