So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to. I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.
Today it was an abdominal MRI. Now if you have been following the story at all you know my abdomen is missing a few things. You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome. Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.
So, why the MRI? Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma. A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem. So, they like to screen for it – twice a year with an abdominal MRI.
http://www.ncbi.nlm.nih.gov/pubmed/22252256
Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.
I really am not in the mood to lose any more organs. I think I have reached my quota for the year. And I have to tell you, this is one hell of a way to lose a few pounds.
So, somtime tomorrow or Monday the oncologist will call me. She will tell me that the kidneys look great. She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is. She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all. She will tell me all that because that is what I need to hear. And hopefully it will all be true.
I need it to be true. Because I will be busy. An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!
Some days I wait for the break. The time when we will be without doctors. Then I realize this is all so new. They are all so scared and confused they are doing all they can when they scan this, study that… Hey, it worked for me when they saved my life with the breast cancer. And, it will work to keep my girl safe as we scan her thyroid religiously.
I am tired. I would be lying if I said anything else. I am TIRED of doctors. But, as I said before… I will keep going, necause there is no choice. Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit
At least I am not afraid of the MRI tube anymore!
I have my colonoscopy/endosocopy on 9/5. 🙂
This comment—oh my gosh lol
Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.
Do I ever know how you feel. I have Cowden’s too–found out in 2007. A month and a half ago I had a segmental omental infarction—another really rare thing of course. While in there seeing that caused the pain they found a lung lesion. I had DCIS and dysgerminoma twice in the past so now I’m waiting 6 months to find out if something completely unexpected is something to worry about or not.
My kids have it too (they are almost 9 and 7 1/2).
I’ll certainly be coming back to your blog. I think you were probably the one Lauren from PTEN world told me about. I used to blog on Yahoo Contributor Network but haven’t been able to in a while. So just by looking we have lots in common!
Good luck to you.
I am on PTEN world too. I am fairly sure I remember thinking we have a lot in common. Maybe you will start blogging agian! In the mean time – welcome!
I’ve nominated you for a blogging award. Congrats!
http://gegebearbear.wordpress.com/2012/12/29/my-firsy-blogging-award-thank-you/