Genetic Testing–The Protocol

12 02 2008

When I went to bed last night, again it was raining.  The forecast for today was rain.  Occasionally during the night, I tossed and turned about making the trip to Vanderbilt Medical Center in the rain.  I often project my own fears on others.  I pictured Sandy calling this morning and canceling our trip to Nashville, Tennessee because of the rain.  How silly!  She would never do such a thing. 

Sandy was going to work at her office until a little before 11:00 a.m.–then she would pick up Vera and me. I spent my morning sifting through all of my routine chores.  Every so often I would look out my window and groan within.  The rain was really pelting hard on the ground.  I think my restlessness had more to do with learning more about genetics than the rain.

For three months now– I’ve been challenged to find out more about genetic testing because I’m a third generation breast cancer patient.  Since my surgery in late December, I’ve made quite a few trips back to my surgeon for minor complications.  He keeps pressing me hard to have genetic testing.  It is an issue that I’ve not wanted to deal with.  In fact, at times the word cancer is so insidious to me that –I have to go days without mentioning it.  And all I’ve heard about genetic testing is hearsay.  I’ve not wanted to do a google search or even to check out the website my primary care physician gave me. 

After I finished my morning chores–I had an hour to spend anyway that I wanted to.  I had a nagging voice in me that said: “Check out the Myriad Test website–learn something before you go to Vanderbilt.” At last–I checked the website out.  I viewed a video about four families that had made the choice to have genetic testing done.  I also learned that men can carry  the BRCA1 and BRCA2 genes for breast cancer.  It can be passed on to their daughters. My cancer doctor had told me that if I have genetic testing that my insurance company will drop me like a hot potato.  He also told me that the cost was something like $4,000.00 dollars.  That is way beyond my scope of financial ability.  Sure, I could come up with the money with a little creative planning.  However, that seemed like a poor priority–when Maria, my daughter, has no health insurance at all.  My thinking was that if I was going to pay out money–it should be to help Maria with her medical bills.

What a surprise to learn that most insurance companies will pay something toward genetic testing.  Also, a l996 bill makes it illegal for insurance companies to discriminate againt genetic causes for illness if one has a group policy.  Thus, I actually learned a great deal while I was waiting for Sandy pick us up. 

The 70 mile trip in heavy rain was nerve wrecking for me.  I tried not to show my fear.  Sandy always picks up on that kind of thing.  I tried to dispel my fear of the rain by sharing what I learned from the Myriad video.  We finally arrived safely in Nashville.  Our plan was to eat lunch at the Alektor Cafe and that we did. This is an Orthodox bookstore and cafe.  We had a relaxing lunch.  I always enjoy visiting with Father Parthenios and his wife Pres. Marion.  Each time I had a test done in Nashville during the fall–Jim and I would eat there.  Sandy took me to have my biopsy in November.  We had a wonderful mother/daughter time that day eating at the cafe, after my biopsy.

Sandy’s appointment at the breast center was at 2:00 p.m.  She didn’t have to wait long.  We both pictured sitting at a desk going over our family tree. Actually, there was a big misunderstanding.  They had her down to have an actual physical examination.  I went back with her.  We were both disappointed.  The nurse was a sweetheart.  When she realized how everything had been messed up–she promised that Sandy and I would at least meet the genetic doctor–and be able to get started on our journey.  We met three wonderful women this afternoon.  The nurse practitioner came in first and talked with us.  She then promised she would track down the genetic counselor and the genetic doctor.  We had to wait a bit.  However, we got to talk with each of them for about 20 minutes.  They explained that they ran a free Family Cancer Risk Service.It meets two Fridays each month.  The doctor told us that she would send us both a packet of information to fill out.  Then she would schedule an appointment to talk with us.  She would develop a family tree out of our information and create a model for us using statistics.  If we decided that genetic testing was something we wanted to do then she would contact the insurance company and find out how much the insurance would pay.  The doctor said that I would be the one to be tested.  If I had either one of the breast cancer genes, then Sandy or my other daughters would have a 50 percent risk for breast or ovarian cancer.  This doctor also explained the law that people couldn’t be discrimated against for genetic problems.  Thus, we learned there is a protocal that should be followed before genetic testing is done.

We both felt relieved that our trip to Nashville was not a total waste of time.  We were both thankful  that there is a protocol.  I was especially pleased to have something tangible to tell my surgeon tomorrow. The grey areas of my thinking are gone.  I have reliable sources now to help with the journey.

Maria has a needle biopsy on Monday, the 18th.  If it just a cyst–then Sandy and I will wait until after tax season to attend the cancer risk service.  ( She is a busy Certified Public Accountant).  However, if Maria has cancer–then we will begin getting genetic counseling as soon as possible.

It was still raining hard on our drive back to Kentucky.  I was still a little fearful.  Yet, I had a peace that the physical rain and the unseen rain of caner would not over take our family.  Again, I knew that positive, clear thinking always wins over crippling fear.  At last, we were home.  I had Sandy drop me off at my cancer support group.  Jim was already there.  They were waiting for a report of my trip.  All was well.

May God’s peace be with each of you!

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2 responses

13 02 2008
shadowlands1501

I was glad to see your posting on your genetic counseling. The information that you were given is something that I will pass onto my family. On my mother’s side, there are five generations of different kinds of cancer. The lastest case is my great nephew, my sister’s oldest grandson. He becam ill at the same time as my husband. He was diagnosed with testicular cancer. For a time, the cancer was resistant to all treatment. The last hope was Dr Einhorn, Lance Armstrong’s oncologist. It was his regime of treatment that has eradicated the cancer from my nephew. There is a genetic component to this disease. The only question is whether to live you life knowing the odds, or live life with the possiblity as a shadow…Difficult choise…Prayers are still going up for you, my friend…..

13 02 2008
nichole3

Shadowlands,
Glad the information was helpful to you. My son was diagnosed with testicular cancer when he was 26 years old. It was caught very early and he had five years of seeing a doctor. He doesn’t like to talk about it though. He is a much more private person than I am. Keep me up about your husband.

YOur friend,
Nichole

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