My Experience With Cancer Genetic Testing ~ Simplify for Happiness
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My Experience With Cancer Genetic Testing

I have had cancer genetic testing and am happy to share my opinions in case anyone is interested. I have no medical training, so please be sure to talk to a medical expert about any of my opinions that you are interested in.

My family has a long and sad history of cancer.  I always thought that it was environmental.  There must have been something in the well water.  Perhaps a tannery in the area polluted the ground water and it made it into the well that my dad's side of the family grew up drinking from. There were cases of breast cancer, colon cancer, uterine cancer, melanoma, brain cancer, thyroid cancer, and possibly others that I don't even know about.  Really, how could so many cancers occur in one family?!  I went most of my life believing that the causes of cancer were environmental.  However, I visited a new PCP doctor and he changed my view of the world. He recommended that I visit a cancer geneticist to be tested for Lynch syndrome and other possible cancer genetic problems.  Let me share my experience.

First, my insurance requires referrals and he sent a referral to a geneticist that specializes in general genetics. That is, she would have tested for Alzheimer's and other health problems.  When I called to make an appointment, they refused to give me an appointment because they said that I needed to go to a cancer geneticist.  I actually would have liked to do both, but they said that if I didn't have a sincere need, that I shouldn't take a coveted spot on their schedule.  I called my PCP office and had them send a referral to the cancer geneticist that they recommended.  

My appointment with the cancer geneticist was at a cancer center.  Prior to my appointment, I was asked to document a complete family history of cancer cases.  Well, given that many in my family have passed away, this was a challenge. I didn't know of the ages and types of cancer of many of them. I was able to contact an aunt though who gave me all of the information that she knew. I then used the web to find birth dates and ages of death.  I also found that the hospital who treated my family members before death was not able to give me any medical records about their cancer history. While my intent was good, I guess that it doesn't matter. The answer was a sympathetic "no" due to ethics issues.

So, moving on, I took all of the data that I had to my appointment with my cancer genetics counselor. When I checked in, I was asked for my insurance card and told that there was no charge for my appointment with the counselor, but they needed my insurance card in case I wanted blood tests done.  I don't know if this is the case everywhere, but I love that they make the counseling appointment free because I think that anyone who is worried about having high chances of having cancer should be able to visit a genetic counselor.  

My cancer genetic counseling meeting was approximately one hour long and my genetic counselor was amazing.  She was kind, thorough in our discussions, knowledgeable, and compassionate.  She even gave me her email address and phone number in case I found more family history later or in the case that I had questions.  I actually did email her a couple of times and talk to her on the phone. She was very kind and helpful.  She is someone that anyone would want on their team!  She seemed genuinely interested in solving the puzzle that is my genetic makeup and helping me to create a preventative plan.

One thing that I wish that I would have known sooner is that cancer genetic testing exists.  If some of my family members would have done the same testing before they passed away, it would have been really helpful knowledge for me.  My counselor encouraged me to ask other family members to get tested so that we could hopefully have more pieces of the puzzle. For instance, did other family members have BRCA2, Lynch Syndrome, or some other gene that I was lucky to not inherit or is it still unknown why they developed their cancers?  In any case, I am not able to go back in time, so my data is all that I have for now.

After my cancer genetic counselor reviewed my family history, she recommended an 80 gene panel.  She was really great about making sure that my insurance would cover it before running the tests.  It was interesting that she promised me that the lab would not run the tests before checking with the insurance and would call to ask my permission again if I was going to owe more than $100.  I was grateful that they were so considerate about the billing concerns.  I had already met my deductible for the year, so I actually paid nothing for the testing.  (This is the opposite experience of many of my hospital visits where I struggle to even confirm the anesthesiologists on duty and if they are covered by my plan, etc. I recently had surgery and couldn't find out who the anesthesiologist on duty would be until the morning of my surgery!  It was stressful to have to wait until the last minute and confirm whether they accepted my insurance. It's not just that they could be out-of-network, but I live in Texas where they are also allowed to balance bill patients. It's terrible.)

I had my blood drawn the same day as my appointment with the cancer genetic counselor, so it was nice that I wouldn't have to take more time off from work to have blood drawn at another time.  She also offered to call me with the results and email me a report so that I wouldn't have to miss more time at work.  She was so truly caring.

I waited a few weeks and then my cancer genetic counselor called with the results and her recommendations for preventative screenings.  She said that she would also contact my PCP and Gynecologist to share the results.  She is still working on the written report and I should receive that soon, but she wanted to call me with the results as quickly as possible.

I have the results and I may share those in the future, but in the meantime, I am only ready to share about my experience of getting the cancer genetic testing.  It's a tough thing to share, but I really want to share because it made a big difference in my life.  My counselor said that some people feel sad, angry, relief, or other feelings.  Mine is a bit mixed, but one feeling is definitely a sense of gratefulness because she gave me a preventative screening plan that could potentially dramatically help to improve my quality of life if things are caught early. 

I have absolutely no medical training and you should talk to a medical expert if you are reading this post. All opinions are honest and my own. Your opinions may differ. 

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