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Endometrial Stromal Sarcoma

1 Oct 2018 18:48

Hi,

I am almost 41 year old and recently diagnosed with endometrial stromal sarcoma, which was initially thought to be a degenerating fibroid. It is considered high grade with some low grade component. Unfortunately it has spread and I have some small lung nodules. I had surgery in June 2018 and I am in the 2nd round of chemo with adriamycin & Olaratumab. Just wondering whether there is anyone with ESS who had Olaratumab as well 

Re: Endometrial Stromal Sarcoma

3 Oct 2018 14:17 in response to Safina

Welcome to the Cancer Chat forum Safina although I'm sorry to read that you were recently diagnosed with endometrial stromal sarcoma and that it has spread.

I haven't been able to find anyone on the forum that has olaratumab with this diagnosis but I wanted to put you in touch with @marie13 ‍ as she was diagnosed with ESS in 2015 and hopefully she'll pop by to say hello and share her experiences with you now I've mentioned her in this post.

You may find more useful information and support on the sarcoma uk website so do have a look when you get a chance.

I hope the rest of your treatment goes well Safina.

Kind regards, 

Steph, Cancer Chat Moderator

Re: Endometrial Stromal Sarcoma

15 Oct 2018 18:04 in response to Moderator Steph

Dear Steph,

Thanks so much for your kind help.

Best wishes,

S

Re: Endometrial Stromal Sarcoma

18 Dec 2018 13:12 in response to Safina

Hi Safina,

I too have been diagnosed with Intermediate Grade ESS, Stage 1b.  Thankfully it had not spread so I did not require any chemo of radiotherapy.  Just wondering how you are getting on and whether you have been able to find anyone travelling the same road as you.  I had a TAH-BSO on September 4th this year so we were probably diagnosed within months of each other - my pathology report came back on October 5th.  I have just had my 3 month follow-up and been told that all ESS is Low Grade, when I said that the pathology report said Intermediate Grade, he said that was still LG - very confusing.  I am ER/PR negative as well.  I am 64 so the loss of my ovaries was no big deal.

I hope that you are ok and that you are coping with the chemotherapy and that you are able to look forward to Christmas.

Best wishes

Sue

 

Re: Endometrial Stromal Sarcoma

12 Jan 2019 10:52 in response to SkippySue54

Hi Skippy Sue,

I just finished the Sixth cycles of Doxo/Ola. Things were looking good in the mid cycle (my CT showed that the residual lesions got smaller, some disappeared), but I felt a bit low as  the last CT showed something suspicious in my liver so I am waiting for an MRI to confirm this. Hopefully it  is nothing bad that I need to change my treatment plan (I just started my Olaratumab maintenance). Otherwise I feel my general health is improving and I have gone back to work.

All the best for you and I am glad to hear that you are fine with low grade ESS.

 

Best wishes,

Re: Endometrial Stromal Sarcoma

12 Jan 2019 12:34 in response to Safina

Hi Selina,

Thanks for your reply.  Hope the results of your MRI Scan will be ok - always a worry although I have only ever had one scan pre op and I didn't really know what they were looking for - all a bit of a blur.  You seem to be going through a hard time, I will be thinking of you.

 I queried my Intermediate Grade ESS diagnosis at my 3 month follow-up appointment a month ago and they said that they would look into it and also took the two research papers I had printed off.  The consultant insisted at the meeting that there was only ESS and Undifferentiated ESS and that all ESS was Low Grade even though I had Intermediate on my diagnosis.  He was really nice though and didn't mind me giving him the reports.  A few days ago the CNS phoned from the hospital and said that they had looked at the reports and relooked at my pathology report with the pathologist.  They have come to the conclusion that I do have the HGESS that I suspected, but didn't want.  On the positive side, I am now getting annual scans and 6 monthly chest X-Rays.  

Hopefully it will not spread - the tumour was almost to the outside of the myometrium but had not come through the wall of the uterus and it had not spread to the cervix.  Pelvic washings were clear and the tumour, uterus and all were taken out as one with open surgery.  If however it does spread, I now know that it will be treated as HGESS which is a bit of a relief.

Keep in touch, there do not seem to be many of us about with this diagnosis - have you been referred to a sarcoma specialist or are you just seen by the gynae-oncologist?  I am not sure what difference this would make - I have not seen a sarcoma specialist and there has never been one at the MDT meting.

Bye for now.

Sue