English Community

Hello,

I'm Montréal-based and a bit of an outlier - I was diagnosed with endometrial cancer in November 2023. Underwent a robotic total hysterectomy, 6 cycles of CarboTaxol, and 25 sessions of EBRT (5 days x 5 weeks) plus 1 brachytherapy boost to treat Stage 3A1 Grade 2 adenocarcinoma.  One of my CT scans showed a multi-nodular thyroid goiter, with a TIRAD5 nodule. Fortunately, that has been benign since we began following it in 2024.

I've been NED since November 2024, and am getting back to racing now that treatment is behind me. I've completed three 5ks post-treatment and am hoping to tackle longer distances again by the spring. The half-marathon is my favorite distance.

These days, I'm figuring out what a Cowden Syndrome diagnosis means - it's a rare inherited condition that raises your risk of several types of cancer, so my journey now has a new chapter.

I saw some recent social media posts that endometrial cancer survivors are welcome, so I thought I'd see if there are others here? I also participate in the OCRA Staying Connected support group for endometrial cancer patients, and am active on cancerconnection.ca

- Brenda 

@BrendaSan thank you for sharing your story and yes, everyone is welcome! So many cancers have adjacency's that understanding and sharing helps build our collective knowledge. 

After what you've been through I'm thrilled you are and remain NED. Three letters that are so meaningful to us (and of which I had no knowledge prior to Feb '24). As well, how great that you are back to running. We are repeatedly told how important exercise is for this journey we are each undertaking.

If you don't mind sharing, how are you monitored relative to your Cowden Syndrome? I had to google that as it was a new item to me. Per my "username", I do like to learn and understand. 😁

I appreciate your engagement with this group!

#Introductions 

@BrendaSan welcome to the group.  I too had to look up this syndrome.  Learning so much about genetics thru this journey, so much I haven't found out yet, scary but interesting at the same time finding a genetic mutation that increased my risk of certain types of cancers and wondering if my siblings have had the same gene too.  We have all had cancer just each a different type of cancer.  Interesting.  anyways off topic.

welcome and great that you are back to running marathons, that's an amazing feat!💪🩵

Yes! I'm learning so much about genetics along the way. My family history includes breast cancer, colon cancer, and uterine cancer, all on my mother's side, so there's a strong indication that there's a genetic link.  

Thanks for the warm welcome.

Monitoring for Cowden means more scans annually, so we can catch any new primary cancers early.  I will have an annual breast MRI along with a mammogram, a colonoscopy (or equivalent because with my radiation history, colonoscopies are higher risk.) Screening for kidneys gets combined with my CT scans for recurrence monitoring, and then I have a skin check every two years with a specialized clinic here at my hospital.

It makes my project management skills handy! My overall monitoring is coordinated by a medical geneticist. For me, my diagnosis is Cowden-like, because I don't have the typical gene mutation (PTEN) but meet all the clinical criteria. I'm part of a research study now, and my DNA is being analyzed in Finland to see if any of my unique variations help classify Cowden symptoms.

@BrendaSan thank you for the education on Cowden. It sounds like you are getting very thorough monitoring. Out of curiosity, how did you get connected to the DNA Finland study. 

#Clinicaltrialsandresearch

The Finland connection was through my medical geneticist. She originally connected me with a study in Cleveland, but my variations didn't fit their scope, so they recommended Finland - Blueprint Genetics, who focus on rare, inherited mutations - https://www.blueprintgenetics.com/about-us/. They are building a DNA databank to test new research assumptions for genetic mutations. 

And yes, I do get very thorough monitoring as a consequence! 

@BrendaSan that is so interesting. Thank you for sharing all of this information. I hope you will continue for many years NED!!!!!