The news we’ve all been waiting for is finally in……
The cerebellum lesion seen on my CT is NOT CANCER!
Woo-hoo! The fact that it’s not a metastatic lesion is awesome. My MRI was read without any comment on the lesion we saw on CT, and that he was unable to ‘access’ my CT. But he did comment on a bone lesion in my skull. We have known that was there. It’s in the bone, has been there since my bone scan last March from KU, and is unchanged. He also mentioned that my brain appears to have small vessel disease-more on this in a minute, but this has never been mentioned on any of my previous imaging. And my Oncologist was not happy with the read and the fact that the Radiologist had access to my scans and for whatever reason just didn’t look for them.
It was a blame game all week-Rad blamed tech and PACS system, radiology manager blamed Radiologist, and so on and so forth. We even started questioning if it was my actual images attached to my name and medical record number! (Yes, that happens) Listen-I worked in this business for 26 years, I can likely tell you exactly where the breakdown happened, but I’m just ready to move forward.
We just want answers. And answers that are made using ALL of the available imaging I have! So my Onc called one of the Neuro Rads at Missouri Baptist-where I had my MRI, and he went over it with her AND compared it to my CT, Bone Scan and clouded imaging from KC.
It appears that area in my left cerebellum is a subacute/chronic stroke. Or in laymen’s terms an ‘old stroke’ meaning greater than 5 days old and more likely weeks old. But I’ve had no stroke-like symptoms (or so we thought) This is where the diagnosis of cerebral small vessel disease comes into play-the tiny blood vessels in my brain appear to be blocked by tiny blood clots. This is common in an aging population and contributes to cognitive decline, early dementia, Alzheimer’s and Parkinson’s.
BUT…..(always a but in my case). I don’t fall in the aging category, and they actually think I may have a hole in my heart sending these tiny blood clots to my brain. This is becoming more and more common, and actually just happened to my best friend a couple years ago and a friend of Hailey’s. The foramen ovale, is an opening between the right and left atria of the heart and closes on its own shortly after birth. A PFO is a patent foramen ovale, or one that didn’t close on its own, and is usually found when testing for other health issues. And there is school of thought that having a PFO can cause blood clots to travel to the brain and cause strokes. And even though it can result in a stroke, one may not have typical stroke-like symptoms.
Treatment plan:
• I get to start taking a baby aspirin every day.
•Echocardiogram with bubble study (inject a solution with bubbles that can be seen on ultrasound during echo to look for PFO)
•Appointment with Neurologist
•Repeat MRI in 6 weeks
If the bubble study is negative we have to look at other causes for the small vessel disease and one is if I was having atrial fibrillation episodes-irregular heart rhythm-which I’m not, but I do experience other symptoms of afib so will look into that also.
I have also been on estrogen suppressing medications for 10 years because of my cancer and birth control for years prior to that, which all carry the risk of stroke.
And there are studies that show a Covid infection can cause these tiny blood clots to form and potentially cause a stroke. Awesome.
Ahem.
It’s a lot of medical mumbo-jumbo I know. But basically I don’t have any cancer in my brain (just on my skull bone) but I do have another medical issue we have to address quickly. Good news and not so good news. I won’t say bad news because it’s not really bad and having the MRI found something we didn’t know about that left untreated could have devastating results.
If it’s not one thing, it’s another. And before long I’m pretty sure my husband is going to smother me with a pillow! Just kidding-it won’t be that obvious. Lol
In the meantime we are working on cleaning up our diet and exercise regimen because I finally have some energy back! My onc started me on a low dose of Ritalin because it has been shown to improve cancer treatment induced fatigue-and it has! #betterlivingthroughpharma
I feel like a normal human on most days thanks to the Ritalin.
We are heading to Dallas this week for Hailey’s White Coat Ceremony and I’m excited because all 5 of us will be together along with my sis Kate and niece Abi. Hailey’s dad is going and her Texas family will all be there too. Will be nice to get away from these 20 degree days to some warmer weather-even if it is only 45 there it’s warmer than MO! Can’t wait to see Hailey in her white coat!
Then Hailey comes to STL for her first clinical site-we get her for a whole month!
Just wanted to update everyone on the MRI results and that they are good (being that there’s no cancer) and how much I appreciate the prayers and good juju!
much love,
K
