I’ve been called one. I’ve felt like one. I assure you I am definitely not a hypochondriac.
There is an upside and a down side to being overly sensitive to what is going on inside your body. The upside- you’re are the squeaky wheel when it comes to getting care. And let’s be honest no one is more concerned with your care then you are. The downside-you are aware of every squeak and creak that goes on inside of you.
Weeks ago I shared my diagnosis of SIBO, which began a life altering transition. Completely changing my relationship to food and seriously slimming my figure, no marathons necessary. Not curable but manageable I was told. After the treatment for SIBO (weeks of antibiotics) was completed I expressed still not feeling right. I continued to have other unexplained symptoms. Ones I’d been complaining of for awhile. I KNEW something was wrong. So the doctor sent me in for an ultrasound to check for an aortic aneurysm. It was thankfully negative. But what resurfaced was my Kidney cyst-originally discovered 3 years prior on a CT of my adrenals.
So perhaps I should jump backwards. Three years ago I had been getting headaches with increasing frequency. Then one morning I suddenly got double vision. It did not subside for hours so I took myself to the doc. My blood pressure was through the roof- 180/100. She ran blood tests and a 24 hour urine test. If you haven’t done one of these you simply can’t appreciate the dread. I had abnormal results. So she sent me on my merry way to an Endocrinologist.
Tumor search began. The endo searched high and low for a pituitary tumor or an adrenal gland tumor. Either one of those could explain my extremely high Cortisol. During the head MRI, Abdominal CT and Ultrasound a cyst on my kidney was incidentally discovered. It was diagnosed as a simple cyst. e.g. written off and ignored as completely normal- 50% of people have them by the time they’re 50 and they do not evolve. They are harmless and benign. So without the presence of any tumors my hormone level was presumed genetic.
During the three years in between CTs of my abdomen I had more issues arise which led to a Neck CT, Chest X-ray, fluoroscope swallowing study and ultimately to a specialist for a scope. The final determination was mild vocal cord paralysis, cause unknown. They wanted me to go to vocal therapy. I decided to take voice lessons instead. Who wouldn’t?
So back to today…. they had rediscovered my cyst. But this time the diagnosis was a complex cyst- Bosniak Class III -possible renal cell neoplasm. Huh? How exactly does a simple Cyst suddenly become a lesion with 60% possibility of being cancer? Simply, it doesn’t. It was never a simple cyst to begin with. Ah! Great. Now I’m a little pissed.
My friend Jen told me when she was diagnosed with cancer it was like the wind was knocked out of her. Everything closed in like looking at the world through a tunnel. I don’t actually know if my lesion is cancerous. But when I got the call I was instantly nauseous, my heart was racing, I felt fear like I never before and I cried all the way home from work.
I could easily land within the benign 40%. The surgical urologist said if he had to lay odds in Vegas, he’d bet benign. So that is good right?
During the two week wait before my surgical consultation I searched the internet. I read everything I could get my eyes on; my mind began to pluck pieces out of my medical history and try to arrange them like a puzzle. I looked up the words on my tests to understand them. Yes I freaked out a little.
In fairness my cousin was diagnosed with Kidney cancer 3 years ago at 43. Sounds familiar. He underwent surgery and they got it all out. He still even has part of said kidney.
I also have a family history of Von Hippel Landau disease-a genetic mutation that prevents the body from blocking certain tumor growth. Just another reason this thing must come out. My cousin with VHL has always been asymptomatic unlike her daughter. Genetically this gene trait tracks back to her father i.e. my mother’s brother, my uncle. So it is possible I have the mutation as well. And renal cell carcinoma is one of the malignant developments from VHL and one of the leading causes of death in VHL patients. If my mother is a carrier then the odds that I am VHL positive are 50/50- a big unknown without testing. So I called the national VHL organization who pointed me to a clinical care center at UW hospital that does the genetic testing for VHL. And since I don’t know what it will cost (BRCA testing produced a $6000 price tag I couldn’t entertain) I plan to wait to explore it further.
A quick side rant. This morning I saw on the news that the FDA is blocking the sale of the 23andme genetic kits. They cite that the accuracy of the results can not be confirmed. And worry that women will undergo unnecessary medical procedures based on false results. They are concerned with the marketing approach and the fact that the company sidesteps health professionals. And we wouldn’t want that right? I suspect big pharmaceuticals aren’t happy competing with a $99 price tag and are applying pressure. But that’s the conspiracy theorist in me. Remember the aforementioned $6000 BRCA price tag. Let’s see if my insurance and medical can bring the test cost down to $99. Because I could use a cost effective test for VHL and BRCA. And I don’t know about the rest of you, but if I took the test through 23andme and was BRCA positive I’d get a second opinion before undergoing a preventative double mastectomy. Information is power and should be readily available. Admittedly I’m highly biased as in my case it could be a matter of life and death.
Okay back to my very real issue at hand. Surgery was the Urologist’s recommendation. Yes, please take this thing out! I underwent another round of testing, MRI, Chest X-ray, and meeting a new Endocrinologist. Due to my cortisol they have to coordinate on how best to treat me during the procedure so my BP doesn’t jump into heart attack zone. And because of the tricky location of my little lump they can’t go in minimally invasive. They need to open me up in order to have the best chance of saving as much of my kidney as possible. Which is fine with me, I’m a little attached to it.
And on top of all this my gynecologist ordered a biopsy of my pesky breast lump. It’s been hanging around for years, palpable but invisible to scans. But apparently it’s time for it to come out as well. How many other shoes is that?
So what does all this mean? I really wish I had access to low cost genetic testing and I’ll be gone from the blog for most of December.