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A Very Merry Christmas to Me

pinky104
Posts: 574
Joined: Feb 2013

I had my gyn/onc appointment yesterday to give me the results from my recent CT scan and CA-125.  My doctor had been waiting for the mass in my paracolic gutter to grow big enough to find when he had to go in to remove it surgically.  The mass was found in late May in a CT scan ordered by my family physician's office when I had some pain, and I'd seen my gyn/onc twice about it already, with a CT scan and labs in September.  My gyn/onc came in announcing "great news."  He said the mass hadn't grown at all since September, and since cancer grows, he now doesn't think it's cancer.  He's going to do one more precautionary round of tests and a scan in June, then I won't need any more work-ups for it.

I also talked to him about genetics.  He said there is a relationship between UPSC and the BRCA 1 gene.  My mother and grandmother both had breast cancer and my father had prostate cancer.  All were successfully removed and none of the cancers killed any of them.  They all died of other causes.  The doctor had his staff call and get insurance approval for genetic testing, then I had blood drawn for it.  Unfortunately, late this afternoon, my insurance company called and rescinded the approval and explained why.  I can fight their decision or have my doctor talk to the insurance company's medical director to get it approved.  If this doesn't work, I have a new insurance carrier in January that I can try getting it through, but then I'll have to make the hour trek down to the doctor's again to have blood redrawn. My sister told me that the test at her doctor would cost $4,000 and she was told that insurance doesn't cover it.  I hope I don't get a $4,000 bill if the outside lab has already received the specimen and worked on it.  

In spite of all that, I'm very glad that this scare is over with, and that it looks like I'll be a 5 year survivor in another 5 months, knock on wood.  I had stage IVb UPSC, so it's pretty amazing that I'm doing so well.  Now I can spend Christmas in peace and not be worrying about when I'll have my next surgery.  I had my cancer surgery in May, 2010 and had an incisional hernia repair in August, 2012.  As we all do, I want to be done with all this.  I hope the rest of you can have similar success in your treatment.   

AWK
Posts: 364
Joined: Mar 2013

I am so glad you are thriving and inspiring me while still in my fight.  I. have no idea how my doctor got my genome testing approved, I know it was declined and he took another whack at it And was successful.  We just got the results and are waiting to meet to talk about next steps.  Keeping you in my prayers and wishing you a very very Merry Christmas!  Hugs, Anne

pinky104
Posts: 574
Joined: Feb 2013

Thank you both for your positive feedback.  I wish you both as much success with your own health.  I know you're facing an especially difficult road, Anne, so I hope your genetic testing helps to smooth the way to a faster, better treatment tailored to you.  I hope you both have a wonderful Christmas. I wish everyone on this site peace of mind for Christmas.

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Great news and just before Christmas.  I am rejoicing with you.  A Christmas present.  So glad to hear you are almost at 5 years.  I'm Stage IIIa  UPSC and just finished my 3rd three month check-up.  In Feb., it will be a year NED.  

Have a great Christmas.  Thanks for sharing.

Jeanette

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

So happy for you, Pinky!  I love to hear this and gives so many of us hope! 

My two cents?  Get your doctor to talk to the insurance company and see if he can get it approved now, rather than waiting until new year/new insurance.   My mother always said, "what's the worst they are going to say?"  Besides, you have probably knocked off some of your deductible for 2014! 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

glad you will be able to enjoy Christmas.  You deserve a Very Merry Christmas.  Each day is a gift.......enjoy.  You are an inspiration for everyone.  In peace and caring.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I have been keeping my fingers crossed and saying some prayers for you to receive this wonderful news.  This makes Christmas extra special!  May you always be cancer-free.

 

Cathy 

flyerette65
Posts: 65
Joined: Oct 2014

I'm so happy for the good news that several of you have received.  It's a real victory! May the Lord bless you and keep you and let His countenance shine upon you.  Merry, Healthy, Christmas to all of us!

Barb or Flyerette 65

pinky104
Posts: 574
Joined: Feb 2013

Thank you, ladies, for all your nice comments.  I don't have a deductible on my current insurance plan.  I'm changing insurance plans next year, and I'll have even better coverage, with no copays for any medical visits (labs, x-rays, scans, doctors, hospitals, chemo, etc.).  Drugs are on a separate plan, and they're a different story (more costly than before) but it looks like that's true of all the Medicare drug plans available in my area. I've read that no plans across the country cover the donut hole anymore.

Anyway, I want to let you know that my current plan has now reversed its decision and will pay for my genetic testing, as long as I get it done by March.  I got a letter from them about it on Saturday. The letter said I might be responsible for a portion of the bill.  It costs $4,500,  so I hope I don't have to pay a large portion of it.  I suspect my gyn/onc fought for me and spoke to the medical director of my local insurance plan to get coverage for this.  My gyn/onc's a really nice guy.  Now, I need to call and see if I have to have my blood redrawn.  It may have been thrown out at the lab where it was sent, or it may be too old to use by now. The results take 3 weeks from whenever the blood is sent there.  I'll let you know if a genetic link is found when I get my results.  It'll be interesting to see if I can blame something besides my environment or lifestyle (or just the fickle finger of fate) for having gotten this.  Of course, it could be a combination of many different causes.  

I already know I have a genetic defect that caused me to get a rare form of hemochromatosis, which appears to have come down through my father's genes.  My mother had a genetic defect which caused her and a couple of grandchildren to get celiac disease.  I'm curious to know if I got a different bad gene from her side, one that may have caused hers and her mother's breast cancer, even though they both had it at a later age (60's, 70's, and 80's). My father had prostate cancer, so there could be something bad in his genes, too. It's hard to believe that my ancestors were at the Plymouth Colony, surviving stormy seas and bad winters back in the late 1620's and early 1630's with all these health probems in their genes.  I wonder if I inherited some of their tough pioneer spirit to have survived this cancer. My surgery was really rough on me, and recovery took a long time, but I suppose that's normal when a person has stage IVb.    

 

   

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am convinced that a genetic flaw caused my uterine cancer, as my paternal grandmother died from it and my paternal aunt died from either ovarian or uterine cancer. They were in their 80's.    My Dad had prostate cancer, urinary bladder cancer, lymphoma, and two types of skin cancer. He almost lived to 98-years-old and did not die from cancer.   My oldest sister went to see a gynecologic oncologist because of our family history and he told her that she had a 50/50 chance of getting uterine cancer. Wow!  He said that I got my uterine cancer from my father's side of the family.   He also said that my three siblings should have genetic testing.  I think I should, too!

Cathy 

pinky104
Posts: 574
Joined: Feb 2013

I had gotten a letter from my insurance company over the weekend saying they had approved Colaris genetic testing for me at the lab where my blood had been sent last week. My insurance company had originally approved my testing for the BRCA gene defects, then rescinded their approval the next day, so I assumed my doctor had fought for me and gotten the approval for the BRCA testing.  I called the gyn/onc's office on Monday to see if I had to have the blood redrawn.  They said I didn't.  However, the girl I spoke to told me that the testing that was approved was for colon and endometrial cancer genetic defects. When the insurance denied the BRCA testing, my gyn/onc had requested approval for this other genetic testing and received it.  One of the reasons they approved it was that I'd also had a basal cell carcinoma on my neck once. This surprised me. I'm not sure what the relationship is with that.  

I'll be shocked if this comes out positive, as nobody else in the family has been officially diagnosed with these, as far as I know. My father did claim that after his surgery for prostate cancer, his doctor examined him very carefully, then told him that he'd thought my father also had colon cancer, but he was not seeing it with the latest exam.  My father had been to a faith healer in between surgery and the doctor's visit, and claimed the faith healer must have cured him.  My mother had breast cancer twice, my grandmother had it in both breasts, my uncle, an MD, got brain cancer but was a smoker, my much older half sister had lymphoma, and a cousin's child had some kind of cancer as a toddler; I never found out what kind.  My uncle and my half-sister died from cancer.  My father lived to 84 and my mother lived to 90 and died of other things.  My cousin's child is healthy now, I believe (the family lives across the country).  

I wish my insurance would just pay for what seems to be the most appropriate testing. I learned from the nurse at my insurance company that there are strict standards regarding testing for the BRCA gene defect.  You have to have at least 3 first or second degree relatives with certain types of cancer and you had to have at least one of these yourself.  She ran through the list of acceptable cancers, and they were breast, ovarian, fallopian tube, and primary peritoneal or pancreatic cancer.  Uterine cancer wasn't on the list, in spite of the fact that my gyn/onc told me UPSC has been known to have a relationship with the BRCA 1 gene defect.  I had hoped that when I switch insurances in January, the new plan might pay for the BRCA testing, but the girl in my gyn/onc's office said that wouldn't happen because the standards are national.  I'll just have to keep on wondering.

It would be nice if we all could have genetic testing without any insurance company hassles.  It certainly sounds to me like genetics played a huge role in yours.     

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