This past week was going to be busy, but I know it is just the start of what is to come.
First up - Genetic Testing
I had genetic testing done with my first go round with cancer in 2013. At that time, my BRCA (genetic testing to see if you have a greater chance for hereditary breast and ovarian cancer) came back negative. I suspect it will be negative again. (Addendum - my tests did come back negative again.)
When I was 38, I signed a bunch of forms allowing the company who would process my test the ability to used my information for research and got the test at a discounted rate. So, I have a vague memory that it was expensive... it has been a long time... so a very distant vague memory... but it was in the thousands.
And let's be honest - I tested negative for BRCA in 2013 and I am dealing with a whole new cancer in 2023. Tests are not always 100% right.
Now of course, my cancer is a new primary cancer so all the testing feels somewhat irrelevant. Right? Or at least, I do not feel super secure with whatever results I get back now. I guess that makes it one test I don't mind having to wait on the results. Or a test I wonder why I need again?
I guess I was somewhat surprised that the Oncologist wanted to do the testing again. She said the testing has changed some in 10 years, and it tested for additional genetic issues and markers (and I think mainly to see if I am going to make it another 10 years... ha!).
Another Day, Another Vein
I never got a call from the Oncologist's billing department to give me the heads up that my insurance was going cover this or a warning on if they were or were not going to cover the testing or even give me an estimated cost.
Once again, I find myself in the position to ask questions and do some self advocacy. I feel bad that I even need to ask questions to the nurse, but she was the first person I saw. Unfortunately, I had to have a pretty head strong conversation to the before she took my blood. I was not rude, more explaining why I was not sure I wanted to take this test. (And of course, this is a conversation I should be having with my Onc - not the nurse - but that would mean the Onc would have met with me... which hasn't happened.)
I made sure to relay that I was not wanting to take this test again if it was going to be over a few hundred dollars (out of pocket for me). Or at least, if it is going to be ridiculously expensive, I need to know how much so I could have the option to decide if I want to do the test or not. And this is even more my thoughts, since I don't even put a huge amount of belief in the results (considering they didn't really ring true for me in 2013... here I am with cancer again). I got a bunch of avoidance and placating answers - so, I am putting faith in my doctor's office... but now I think I have lost my mind trusting them. There is one thing that I am realizing, I have lost a lot of faith in my current Oncology group!
In the end of the brief visit, she got multiple vials of blood - for genetic testing and standard blood tests.
In typical breast cancer fashion, it's time for the go - stop - wait for test results - go again game.
Cancer is full of stop-go type of situations and testing. Now, I have another lingering test result to wait on that they say will help determine what they are going to do. And while I guess this one is necessary, it seems more like a big unnecessary money pit test. If it was my first time taking this test I would think it was essential. Now, it just seems like a waste of time (and money) because the first test gave them an answer... and despite the answer saying I did not have the BRCA gene I am still here for cancer round 2.
With so many issues from feeling unheard, bad communication from the Onc, dismissive treatment, and broken trust, I am starting to look for a new Oncology group and doctor. I feel like I have had to argue, explain, and beg for my healthcare. I have been forced to make a ridiculous effort to get things done leaving a underlying concern that there was some (I hope) unintentional incompetence on my doctor's part too.
All these issues make a bad combo. However, time is not on my side. I still need to get stuff done right now too. So, I can't just drop my Onc and go rouge. I need to get my MRI and FISH and genetic test results back. I need to figure out what treatment I need, and start it. I may need to do these things quickly... so, I am going to start looking while also doing my best to get necessary things done at the same time.
Soap Box Moment
It is a business. And we are paying for it. Never forget, you are paying for your doctor and your care. You have every right to ask questions and advocate for yourself. It is your right!
Trying not to dwell on the financial black cloud looming over me, I spent the rest of the week busy with my normal life. I had appointments, driving kids to their activities, and even got some time in for a bit of fun exercise with my daughter.