JUNE
Skin Issues
Cowdens Syndrome has a mountain of things that any sufferer has to look out for, cancer being the biggest one. But one of the things that irritates me, is the skin issues. Before I was even diagnosed, I had started having skin issues. A lipoma on my sacrum. A cyst on my cheek. A keloid scar on my arm. A mole on the crown of my head. All things that had to be surgically removed. I have scars from these minor surgical removals, but they are a small price to pay. The hard part is the wait for results. Is it a benign or malignant lump? Luckily for me, all of them (so far) have been benign.
What drives me loopy though are something called Trichilemmomas. These ‘bumps’ start at the follicle of the hair and are prone all over the body. Me? Oh, I have them. They are on hands, arms, feet, legs, parts of my torso and a few facially too. They are just irritating. You scratch – you catch them. You shave legs/underarms – you catch them. You get my drift. But you know what? There are people in this world that have much bigger issues. A few skin tags are nothing in the grand scheme of things.
MAY
Thyroid Dr
I had an appointment this month; time for my yearly thyroid check with the wonderful Dr Donovan. I have known him since I had my hemi-thyroidectomy back in April 2023. Now it is time to review my yearly scan, for potentially removing the other half. My scan results came back and showed what I had expected. Polyps are still on the thyroid, but they are stable. However it did show something that could be (and I stress could be) indicative of an autoimmune disorder.
I saw the surgeon and had a discussion. Cowdens Syndrome does put me at the risk of thyroid cancer, although this is low. But seeing as there are polyps there, I am of the theory, ‘take no risks and take the rest of the thyroid.’ As I am asymptomatic, he begs to differ.
Following review from the surgeon, it has been decided that he will monitor the thyroid. So, off I go next month for a baseline ultrasound, and we will play it from there….
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!!
