Endometrial stromal sarcoma (ESS): What treatment did you get?

Hi! I had a hysterectomy for fibroids more than 10 years ago and everything was fine then. Last year, thanks to an elective heart score scan, a small tumor and numerous tiny spots were discovered. I had the small tumor removed immediately. After a very long process like 2 1/2 months of waiting for pathology from Mayo's and I believe in Texas, it was determined that mine is slow-growing ESS. I'm on a hormone blocker wiping out the estrogen. (I understand this medicine is also used to treat Brest cancer but I don't remember for sure). Every other test I've had is clear. No chemo or radiation. I've had CT scans every 4 months now and lab work every 2 months. On supplements now calcium, magnesium and exercise most days to maintain good bone density/strength. It throws you into immediate menopause so think those symptoms, too. That scan saved/extended my life as I am in my mid 60s and very healthy(diet and exercise) and asymptomatic. A freak of nature thing I guess. I am thankful and receive good care. It is so, so rare indeed. Blessings to you and all...

How is your mom doing now? Did she have any other treatment other than radiation like chemo or anything? Is she healthy and able to work and all.. did she have abdominal hysterectomy? I am almost her age and recently diagnosed without any risk factors and just a day of minor spotting as a symptom to perform D&C thats revealed this diagnosis.. still waiting other tests before they can decide on hysterectomy..

Thank you. So the tumor and tiny spots discovered in pelvis area? If the hysterectomy was all clear 10yrs back, how can it be endometrial sarcoma now?

Sorry. Everything is fine in the pelvis. My tumor and spots are in my lungs. Somehow, some time some cell(s) mutated who knows how long or recent it's been, but showed up. PET scans showed everywhere normal and healthy. Now, I have the contrast CT chest scans which have shown the medicine working and I'm stable. It was more than quite a shocker to learn I have ESS with this going on in my lungs after so many years from the hysterectomy and feeling great. Thankfully, they were able to run the genetic testing to determine course of treatment and it took forever to get the all of the results.

Hello @nzq21p —

You are asking some great questions. It is always good to be informed so you can advocate for yourself.

A chest/abdomen/pelvis CT scan was done a few days before my surgery to look for spread (none seen). I had a robotic-assisted (DaVinci) hysterectomy, with all the incisions made in my abdomen.

The clinic I go to is not an official sarcoma center (as defined by the Sarcoma Alliance), but my gyn oncologist is knowledgeable about sarcoma. Everything happened so quickly for me that I didn’t even know to ask the question of her before my surgery. However, I had a lot of trust in the referral my regular gyn made for me to this surgeon.

That said, after my surgery I did informational consultations at two sarcoma centers (one was the Mayo) to learn more about sarcoma and specifically ESS HG. It was helpful, I’m glad I did it.

Thank you..I just joined ESS facebook.. testimonials over there for HGESS were horrible, I couldn't take it..
Did you ever have any genetic testing done to find any root cause?
Did you have any pain before you were diagnosed ? Is the diagnosis from the biopsy or after hysterectomy?
Until the diagnosis, I didn't have any pains and walking 10-12k steps every day even on the day I had d&c.. but since the diagnosis every body part seems to be painful and couldn't sleep at all.
Apologies for asking too many questions, I am so terrified about prognosis

Hello @nzq21p —

Never feel you need to apologize for asking questions. This is a rare cancer and it can be hard to find information. I have asked a lot of questions myself.

I did not have genetic testing. Samples from my biopsy and the hysterectomy did have testing to determine the exact gene mutation which led to the final diagnosis. My understanding is there are a few ideas about what might predispose someone to have ESS HG yet is it is very difficult to determine the root cause.

No pain prior to the diagnosis. Like you, I felt terrible after being diagnosed. I’m sure it was all the stress and anxiety. A cancer diagnosis is a very traumatic event!

You are not alone in feeling terrified, especially right after getting a diagnosis. There are so many uncertainties and everything feels overwhelming. Keep asking questions and look to your support network as you move forward. Be kind to yourself. Prayers and positive thoughts headed your way.

Thank you so much.. your replies are so comforting..
Are you perfectly healthy and able to do things like before the diagnosis? I feel like I never be normal again.. 😥

Also, did you have ER/PR positive or negative.. I have been reading that matters and being positive is good.. mine er negative and pr positive

I did have ER/PR as part of my testing. Your oncology team will best explain what your results mean for you!