Endometrial metastic to both lungs

Hello Joyce, I am sorry for everything your going through. Thank you for sharing it gives us hope.

Lynn

I’m glad you are having good results with your chemo. Saying prayers for strength during your journey! My oncologist told me she would not be doing follow-up CT’s on me. I don’t understand that, but I will push for answers on my next visit. She told me it would be based on symptoms, but after my total hysterectomy there won’t be spotting and sometimes when cancer is present you don’t have symptoms.

i am glad it’s working for you. I am wishing for you good results.

You're a little longer survivor than I am. My original diagnosis was in 2012. After five years I was discharged back to my regular gyn. I went to ortho with hip pain 6 years after the original diagnosis and an MRI found the recurrence as a pelvic mass with hip damage. A PET scan showed metastasis to both lungs. Following chemo and radiation the pelvic mass is stable, and possibly only scar tissue. Lungs are okay. At no time did I have shortness of breath or other lung symptoms.

Did you have a biopsy? Is it the same or a different cancer?

I hope you have the best outcome!🩷

So sorry to read about your recurrence. From what I have read, the long latency period does indicated a slow growing type of cell. If you have the same mutations in the recurrence. And also from what I have read it does not change your stage. You remain the same stage, but with recurrence. I did read a study that presented a case of late recurrence, but they decided it was a new cancer based on mutations in the new endometrial cancer. Sometimes we have endometriosis, and that leaves endometrial tissue in the abdomen. It is rare.

Guess I'm in the same boat. ER+ endometrial adenocarcinoma in one lung nodule that was being watched because it had been doubling in size since 2019 - waiting for the ngs results. Will either have cryoablation or radiation.

However, I am on a breast cancer hormonal regimen and have been for 6 years. Not many people with endometrial cancer are in my shoes.

After 5 ½ on Ibrance and an aromatase inhibitor, the Ibrance made my blood counts go really haywire and I probably spent more time on Ibrance than on. I kept asking for a reduced dose, but my doctor was not convinced that was necessary. (Took aromatase inhibitor the whole time.) This past Sept (2023), the CT/PET scan showed recurrence in the vaginal cuff and something in the lung nodule. Intersystal brachytherapy took care of the vaginal cuff. The outcome was very early not solid ER+ cancer. They couldn't even get the genomics. The lung biopsy was not solid, but not cancer.

So, I remained on Ibrance & the ai, but ended up taking too much time off the Ibrance again. The doctor finally reduced the Ibrance dose. On the Dec. scan, the cancer in the vaginal cuff was nonexistent, but the lung nodule lit up. The lung biopsy last week (Jan. 2024) showed the latest recurrent cancer. For now, I am on the lower dose of Ibrance and the ai.

I think the Ibrance did work, but the ai by itself does not. It didn't work by itself 6 ½ years ago when I got off chemo and had a recurrence while on it alone. Depending on whether or not the genomics has changed, we will probably stay with the Ibrance but change the ai to fulvestrant (painful shot) or imlumestrant (pill). I will probably continue on the hormonal treatment path as they do in breast cancer.

I sincerely wish that some ladies were being treated on this path like me. I really hate having to hang out with the metastatic breast cancer ladies. Sort of lonely....