Hi Dawniep,

Welcome to Cancer Chat.

We have had quite a few women chatting on here about Endometrial stromal sarcoma.

Perhaps you could get in touch with them on an existing thead?

for an example.

Best wishes

Renata

Cancer Chat Moderator

Thank you Renata

Hi Dawniep

You have possibly read  up on some of the  other people with low grade Edometrial Stromal Sarcoma, which suprisingly to me are a few.  I was diagnosed back in Oct 2002 with the same. Mine didn't come to light 'til a few years after my total hysterectomy (back in May 2000), as the cancer makeup had leaked previous to removal, it took  just over 2 years to establish itself.  As you have probably been told it is very rare and none of my medical team had even heard of it at the time.  I joined this site back in Jan this year as I was looking about and came across the site and was curious to know if there was anybody else with post hysterectomy ESS.  I was rather surprised at the different responses, it either seems to be getting less rarer or more people are coming forward. The information that my oncologist found on it was one paragraph at the time, so I should think there is a lot more about it now.  I have had no set back since removal of my tumour and a few hiccups along the way, but no other tumours. I was treated with a male hormone replacement, Megestrol, which I am still taking and will continue to take.  I have some cancerous cells still on my bowel as they were too many and minute to remove, (the tumour was in the pelvic region and attached to my bowel so had a colostomy for a year) but are dorment still and hope they continue to stay that way.

Good luck for your next surgery, any questions I will be pleased to answer them if I can

Take care

Linda

Hi Dawn

How did your surgery go? Do let us know how you are.

I joined the group a couple of weeks ago. I too have LGESS - a recurrence following my initial diagnosis in 2004.  I'm currently taking provera in the hope that it will shrink the tumours enough for surgery.

Best wishes

Ruth

Hi Ruth

Thank you for your message. It is so nice to be able to people who are going through this, I've been reading some of the stories, although some very sad, others are so reassuring and positive.

I am sorry to hear that your have ESS has returned. I hope that the drugs manage to reduce the tumours.

Surgery went as expected. I am feeling a little sore...  Im still not sleeping well, so extreamley tired at the moment...

I should have gone to the hospital today, but they called me this morning to say that the results had not been received, so I am having to wait another week! I suppose it can't be helped because of the 2 bank holidays!!

Will keep you updated.

Take care Dawn x

H Linda

How are you?

I am not sure if you can see my reply to Ruth's message!!

Sorry bit new to this 

Best wishes Dawn x

Hi Dawn

I am glad the surgery went ok, even though there is inevitably pain and tiredness.  From my experience now, you have done the right thing having your ovaries removed.  I didn't and that is now where the ESS has come back (although in other places too). I think things have changed in the 7 years since I was diagnosed - it seems much more standard to have ovaries removed now, although it's hard to have to have 2 surgeries one straight after the other. Has it been suggested if you need to take any drugs?

I know what you mean about the two bank holidays affecting everything, but I hope that when you get the results everything is all clear.  I am waiting to find out about my second opinion, but I am going to be patient and not phone them till Monday.

I find it really helpful to talk to other people who have this rare cancer and I am glad I found this site.  I also use the Sarcoma UK gynae support group which is a small group but all women with similar problems.

Anyway take care, I hope you are back on your feet soon - but don't do too much!!

Love Ruth

I am so glad to have found this site. I was diagnosed afte a D&C and ablation on April 11. My doctor called me two weeks later on April 23. On April 26 I had a total hysterectomy. This has happened to us both at the same time. Considering how rare this disease is, I feel like I already know you.

Having two surgeries so close together has been extremely difficult. I haven't been to an oncologist yet, but the Mayo Pathology lab said the tumor was confined to my uterus. It was stage 1 grade 1. We caught it very early. I hope you are feeling and healing from your two surgeries. Did they use robotic or lypocscpic? I am finding it difficult to not do everything for my family like I used to.

I am like you, I am in shock! I turned 40 in April and now my life is upside down. I know the disease is very treatable, but it is still very scary. I am sure after I have my scans and visit with the oncogist I will feel better.

Are you in Britain? I know this is a UK site, but I am in the states, Kansas. We have two university based medical centers that deal with this type of Sarcoma, one in New York and one in Houston. My insurance company covers the one in Houston, so I will be going there. It is about a 14 hour drive, but at least I will be working with doctors conducting the latest research. I am waiting to hear when my appointment will be.

What kind of scans and how often do they check for reoccurance? Also, I am still taking bio-identical hormones, which includes estrogen. My gynocologist and I talked and there are so many benifits to the bio-identical hormones. She is not sure what the oncologists will say.

I am so sorry for the long reply. I haven't talked to anyone who understands. I think I will just scream if I hear, "Well, that isn't a bad cancer. You will be just fine." People can be extremely incensitive. my family is tired of me being stressed about it, and I am tired of the aches and sharp pains in my abdomin from the surgery. And now my doctor thinks I may have an ulcer from the double dose of antibiotics I had to take for an infected incision.

Let me know how the next few weeks go for you. It will be interesting to see how our treatments and disease progresses.

Jackie