APRIL
Scans
Here we go again. This month is scan month for Cowden Syndrome. It’s 2 months early this year due to needing it done for the thyroid surgeon next month. This is round 4 for me and is a yearly event, almost like a pageant! I parade around Sunshine Radiology in a divine gown that allows the technician access to boobs, kidneys, and thyroid. Then I have to drink copious amounts of water and not pee. Sounds easy, but when you have a bladder like mine, it can be problematic.
These scans are part of the ‘preventative’ part of Cowdens to ensure that I am checked regularly! Odds and ends usually show up and when you get to the next year, you just hope that those little odds and ends haven’t grown.
MARCH
Where did I get this from?
I’ve been diagnosed with Cowdens since early 2022, about 3 years now. Several medical issues and a genetic blood test confirmed what I had been dreading. Since then, I’ve had countless tests, scans, day surgeries and general surgeries. Cowdens is genetic, to do with the PTEN tumour suppressing gene that we all have. In me, there are mutations to that gene which mean that I am 85% likely to get a form of cancer in my lifetime. Putting that aside, where did I get this from? This syndrome had to came from somewhere.
The more I think about it, the more I am certain that it came from my mum’s side of the family. There are no symptoms on dads’ side, nothing that ticks any boxes for this syndrome, but on mums…I can see a few things. My maternal aunt has some neurological difficulties which had similar markers to autism, a known issue for Cowdens. That same aunt also had breast cancer – a known Cowdens risk. Both maternal grandparents had thyroid issues, another marker. My mum had several medical issues that were markers for Cowdens, issues that I now have. Things like cysts and other lumps being removed, as well as gastrointestinal issues.
Of course, it’s easy to see looking back now. Hindsight’s a wonderful thing. While I regret that she is not here for me to ask more questions, I know she would hate to think her genetics gave this to me.
FEBRUARY
Waiting for Results
February marked the start of the year’s tests for my Cowdens Syndrome. I was diagnosed in 2022 by my gastroenterologist and geneticist. Each year I have mammograms, scans, and a colonoscopy. Welcome to my world.
February is test number one. On the 5th of February, my mammogram was completed. I always remember my aunt telling me, “leave your dignity at the door. It’s like having your boobs squashed between two plates of glass.” She wasn’t wrong!
Here’s my question. Why don’t BreastScreen Queensland have a table to lay on where the patient lays on their stomach and ‘literally’ drops their boobs through a hole in that table? Why can’t we scan that way instead of squashing our boobs like we do?
Anyway, mammogram done and the wait for results begins. The nurse in me knows how long the results take and why, but the woman in me wants the results yesterday. Waiting is the toughest part.
This time round, the results came quickly. All clear and come back in 12 months.
JANUARY
Planning the years tests.
Diagnosed with Cowdens in 2022, I am subject to a yearly battery of tests and procedures. The 2025 plan is already in place and some things are already booked.
February – this is mammogram time.
April – GP check in for scan forms and complete the scans on breast, thyroid, and kidneys.
May – appointment with general surgeon about thyroid.
September – colonoscopy time.
That’s what I have so far…. I’m sure there will be more to come!!
