Was your endometrial cancer tested for mutations in the gene POLE?

@dlgbb Aww, these photos are so beautiful. I'm really happy that you and your husband were both present to celebrate your daughter's wedding. Yes, I'd have to agree. It's time to make those bucket list items happens! Biking in the Netherlands during tulip season sounds awesome!

@naturegirl5
Hi Helen,
I am so happy for you that you have had four years of NED. I hope that continues for you! I am glad that the worry gets less as time passes. I can’t say I have been horribly worried about a recurrence of this particular cancer (because of the POLe mutation), but I do worry about a new cancer. I was very relived to have a good colonoscopy last week. It seems like I can relax and just get on with it, but when so much testing happens, then my mind goes back onto “alert”. I have had several heart tests lately too, and have another one next week, and I am just ready for all of them to be done and to just be away from the doctors for awhile, even though they have all been absolutely fantastic.

I did cry when my husband and I walked our daughter down the aisle. I was just so relieved that we both made it to see the wedding. My husband had a heart attack last October, right while I was waiting for my initial hysteroscopy to see what was going on. Originally the kids had planned to get married in France, because they live in Germany (they are both opera singers). After everything broke loose with our health, they moved it back to Canada, specifically Toronto where they used to live. It was so magical to see the happiness on their faces. I couldn’t cry long, though, because the bride began to cry and didn’t have a tissue, so I gave her mine. After that, I had to keep it together! The ceremony was so happy and joyful, though, it was hard to cry. They were both just beaming. Their ceremony and reception involved a lot of music because most of their friends are professional musicians, and the bride and groom sang a duet to each other. It was so beautiful. Now they are back in Germany, and my husband and I are hoping to visit in the spring. Our health seems to be stable, and my next big goal is to plan a trip so that I can also bike in the Netherlands during tulip season. I think we have to try and make all of our bucket list items happen, even if health is good!

@dlgbb Thank you for sharing such happy news and for the photos. The painting is huge and the setting is lovely. What an elegant place for a wedding. How much crying did you do? I'd have been crying the moment the bride walked into the room.

When my brother and I were in Eastern Canada a few years ago I asked him if he'd ever visited Niagara Falls (he lives in California). When he said "no" I figured everyone has to visit Niagara Falls at least once, So off preferably from the Canadian side. So, off we went. We also visited Niagara-on-the-Lake. What fun to get there by bicycle and stop at vineyards along the way.

It's been six years(2019) since I was first diagnosed with endometrial cancer. I had a recurrence in 2021 and that's when I had radiation therapy. My next appointments will include CT with contrast of lungs, pelvic region and abdomen and a physical exam. Almost four years since the recurrence and NED all that time. For some time after the recurrence I was anxious and worried about another recurrence or a new primary cancer. Sure, it could happen but the worry isn't present anymore. Like you, I am making new and wonderful memories!

@naturegirl5
I agree! Fall is the best. It gets so hot here. We have had many days in the mid 30’s, so activity is either early morning or late into the evening. Now I can get out and walk the dogs or go for a ride any time of the day again. The wedding was held at the Windsor Arms Hotel in Toronto. It was a really beautiful venue. The picture that you mentioned is incredibly tall. I will attach another picture so that you can see the scope of it. After the wedding, our families went to Niagara Falls for the weekend, which was wonderful (and a very wet boat ride!). We biked from Niagara Falls to Niagara on the Lake, and stopped at vineyards along the way. This past weekend, before my appointment, I went biking with a friend in Canmore and Banff. It is all about making as many wonderful memories as you can!

@dlgbb Hello! What a delightful summer you've had! Thank you for the photos and especially the photo of the bow of your kayak. Congratulations to the proud mother of the bride. The wedding photo is lovely with the painting in the background. Where did the wedding take place in Toronto? It's such a beautiful setting.

Glad to know, too, that your stomach is better and that your latest visit showed NED (no evidence of disease).

Although we've had very warm weather for the past few days (26 degrees!) the leaves are turning and Autumn is upon us. It's my very favorite season. The days are still warm enough to be outdoors, the nights are cool, and best of all--the biting flies and mosquitos are gone. I grew up in Southern California and so the change of seasons is still a remarkable experience for me.

I hope you continue to get your energy back. Like you, I'm so grateful to have my cancer care team who has continued to take such good care of me.

@naturegirl5
Hi Helen!
I am feeling very well. I would say my energy is probably back to 80% of what it was, and my stomach has settled down a lot. I still have some swelling, but that may go on for some time. I just had another follow up appointment in Calgary this morning, and all is well. I will have one more appointment with just the physical exam, and then it will be time for an appointment with a scan. I have really enjoyed the summer, and have line danced, kayaked, hiked a bit, and bicycled. I am just so grateful that I have felt well enough to do these things! I also got to see our youngest daughter get married in Toronto. I am so, so grateful.

If you had a next generation sequencing (NGS) panel done on the tumor tissue, POLE should have been one of the genes included. But if you had a genetic test done on your blood looking for inherited mutations, that won't tell you what you want to know. (There are also "liquid biopsies" where they take blood, remove the blood cells, and sequence the free DNA in the blood, which may include "circulating tumor DNA (ctDNA)". Depending which test, that might detect POLE mutations from the tumor. But these tests only sometimes work.)

Thanks for that explanation. I also did an extensive genetic test once I had a confirmation of cancer (otherwise would have been out-of-pocket). I skimmed it for red flags (no doctor reviewed it with me), but I'll go back and look if it's in there?

POLE testing is not done routinely in the US. The NCCN guidelines, which list recommended tests and treatments, suggest POLE testing. BUT they do not change treatment recommendations based on the results, unlike in the UK or Canada apparently. Probably because of this, insurance companies won't pay for it for patients at their initial diagnosis. They will after a recurrence. (Hospitals will happily perform any test that insurance will pay for.)

So, just like when I originally started this thread 3 years ago, if you want a POLE test, you have to beg and pay for it yourself.

@dlgbb Thank you for the explanation of what was found in your pathology and what and why you decided on radiation therapy.

How are you feeling? Are you back to your routines and outdoor activities?