Hello, I’m new here. I was diagnosed in Oct 2022 after hysterectomy to remove a 10cm “fibroid” that was actually cancer. It has metastasized to my lungs. I had a two nodules removed with lung wedge resection Dec 2023. Pet scan last month showed new growths in lungs, responsive pelvic lymph nodes and a new 12cm mass in my pelvis. Just had surgery two days ago to remove my ovary’s since LGESS is responsive to estrogen. The new mass was actually one of my ovaries. Pathology just came back from the ovaries and pelvic lymph nodes, showing the tissues were cancerous, consistent with my known LGESS.
supposed to start aromatase inhibitor, Letrozole, to help shrink and stop growth. Anyone here have LGESS? If so, any advice or lessons learned that you would like to share?
Hi again Rebecca42
I have just replied to your post in the soft tissue sarcoma forum to 'bump' it back to the top of the discussion list. I'm doing the same here and I'm sure some forum members will be along soon to share their experiences with you.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Rebecca42 I have just replied to your other post in the sarcoma group, and then saw this post here. I have LGESS with metastatic tumours in my lungs. I have been on anastrozole now for nearly 10 years, and my tumours are stable. I will send you a friends request, I am happy to chat any time, there’s not many of us with LGESS as it’s so rare.
Not everyone has the same side effects. I would say give it a go and see how you get on. I still have joint stiffness and pain on anastrozole but for me it is better than letrozole. I am also on zoledex because they left one ovary behind ( wish they just removed it but that’s a different story ) so it’s hard for me to say what is causing the most side effects. Living with estrogen blockers is not easy, but you do learn to adjust. Make sure you have a bone density scan so they have a base line to check further scans to. Osteoporosis is a risk on these meds.
