July 2022

July 21st 2022

Yesterday, I had a “growth” removed. The Dr that removed it has every confidence that it is a hamartoma. They are  a benign growth that Cowden’s sufferers are prone to, but it has gone to the pathology lab anyway. Better to be safe than sorry. 

It had been on a “watch and wait” with the Drs for some time, but the time had come given the diagnosis to move on and get it removed. Now the worst part of any treatment…..the wait for results. 

July 1st 2022

It turns out,  that Cowdens Syndrome is presenting exactly as expected. My first round of yearly scans and tests are complete and the results are in. Makes it sound like Eurovision doesn’t it.

The following were located on my scans in five separate body areas. Hemangiomas, cysts, hamartomous polyps, multi-nodal goitre and lipomas. So far, no treatment is required which is good news. A couple of the test results I have to monitor, as they have the potential to be problematic, but I know what I am looking for.

My current plan now is:

– Another colonoscopy in December 2022.
– A referral to a gastroenterologist for ongoing care and monitoring.
– Thyroid scan in August.
– Those results will indicate whether surgery is required.
– Mammogram 2023
– Breast CT/MRI 2023
– Kidney CT 2023
– Colonoscopy 2023 (unless they are nice to me and say 2024)

More symptoms have reared their head, and it’s easy to see looking back,  that they were there all along. Balance and depth perception issues are common with Cowdens. When I think back, I have had these for years. My left side has always been worse for depth perception and from when I was a child, I would always have bruises from walking into things, corners of worktops, cupboard doors etc. Easy to see in hindsight isn’t it. A seizure trigger has joined the mass of symptoms too. A smell that is prone to cause seizures seems more potent to me now. Whether that is linked, I am not sure, but something to be aware of. 

The ongoing plan is monitoring symptoms. That is all I can do for now.