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ESS for 13y

Colouraddict
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Hi just wanted to introduce myself, I was diagnosed with endometrial stromal sarcoma in 2005 so over 13 years ago when I was pregnant with my son.  At the time the surgeons etc couldn't tell me anything about it, I was full with happy hormones and so it was all a bit surreal.  Although I was aware as I was keeping an amazing diary for my son, should something happen to me. 

I didn't get much support from family and friends either but it later transpired my husband at the time had been contradicting my plees for help by telling  me & other people I didn't have cancer. Dear of him! 

it grew back again and was removed and I think I had biopsys. I refused the hysterectomy so I was given hormone patches which have stopped all bleeding but I think they're increasing my migraines greatly. My ca125 are apparently OK so no surgery in 10y?  I'm just wondering who else is out there with ESS and how you're getting on.  Is there any better understanding now? 

  • Welcome to Cancer Chat colouraddict and thank you for sharing your story with us.

    I know you're hoping to connect with others so I've had a quick look through the forum for you and found three other members - [@SkippySue54]‍, [@Safina]‍ and [@Sundial]‍ - with the same diagnosis who I'm sure will pop by when they can to say hello and share their experiences with you now that I've mentioned them in this post.

    I hope this helps but do feel free to join in on other discussions you may find using the 'search forum' option in the blue bar above.

    Kind regards, 

    Steph, Cancer Chat Moderator

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    Hi

    i was diagnosed with endometrial cancer in April 2918. I had a total keyhole hysterectomy, ovaries and tubes removed plus three sessions of internal radiotherapy. My treatment finished in October. I’ve just had my first check up and there is no sign of any return. I was 64 and post menapausal  so no problem with the hysterectomy. What would you like to know? Please ask.

    Sundial

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    Hello,

    I also have ESS and was diagnosed in mid 2018 at the age of 40. I had an extensive surgery. Unfortunately my ESS has spread and it is hormonal negative. After the surgery I was left with few small lung nodules and two nodes in the abdomen. I have undergone 6 rounds of chemo and now in the middle of second line chemo as the first one only transiently worked. Apart from this, I feel grateful that I am fine in between the chemo days. So I continue to work part time, doing gentle exercise regularly, and enjoy my life. Hope this chemo will work, otherwise they will test the genetic of my tumor for suitability of a new drug.

    Best wishes,

    S

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    Hiya, welcome to the ESS club.  

    There is perhaps far more information out there than when you were first diagnossed.  I was diagnosed with ESS in September 2018 and it was quickly followed by a hysterectomy plus tubes and ovaries removed - all gone.  I queried my pathology report as I think that my wonderful oncologist (and I am not being sarcastic, I think that he truely is wonderful and very caring) was not aware that in 2014 the World Health Organisation (WHO) changed the classification of ESS and divided it into high grade (HGESS) and Low Grade (LGESS), leaving Undifferentiated Uterine Sarcoma (UUS) in a category of its own.  I have HGESS.  Unfortunately as this condition is so rare, the majority of oncologists have little knowledge of it or how it should be treated.

    It sounds as if you must be LGESS or you would have never have got away with such a long time being No Evidence of Disease (NED).  LGESS is usually hormone positive, which is great for you as you can shrink any recurrances with hormone therapy - it grows on oestrogen and/or progesterone.

    You say that you were given hormone patches - that sound ultra scary - they feed the cancer and increase the risk of a recurrence.  Together with the fact that I assume that you still have your ovaries pumping out oestrogen also feeding any baby tumours that may be trying to grow in your tum.

    I think that the time has come that you need to go back to see at the very least a Gynaecological Oncologist but if you live anywhere near London, ask your GP for a referral to a specialist hospital in London for a complete evaluation of your case.  If not then there are specialist sarcoma centres in Southampton, Birmingham etc...

    Again, an assumption - you have had your children now and are not planning any more - the time has probably come for you to get rid of all those girlie bits, face menopause but also get rid of migraines - mine all went when I hit menopause - happy days.  Hot flushes much eaiser to cope with than migraines.  

    If you really want to live to see your grandchildren, you do need to see someone and get the best advice possible for the way forward - sorry, that sounds super scary but it is reality.  The problem with husbands is that they see the cancer as that nasty thing that you had removed and therefore you don't have cancer any more - it doesn't quite work like that.  They say that LGESS is an "idolent" cancer ... but it can come back 20 years after the initial cancer.  Go and see someone.

    A great source of information and support is an American Group (don't be put off) - http://ess-sarcoma.com. .  They have a secret Facebook Page that you can access via their website.  You get so much information and support from the other ladies on the Facebook Page that are travelling the same journey as you are.

    The organisation - NCCN (American again - what isn't) have pubished a great patient guide that I think will help you:  www.nccn.org/.../

    Keep in touch, let me know how you are getting on. 

    Sue xxx

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    Hi Colouraddict, I just read your post and am I right in reading you have not had a hysterectomy, and it's been 13years? I am only diagnosed with LGESS a month ago as I had a myomectomy to remove a suspected fibroid. (We had been TTC) I still want to have a pregnancy, and I am visiting a specialist in London (coming from Ireland) to see if this is a possibility before I have a hysterectomy. My LGESS has not spread. I have been searching the interent for women who had LGESS and still managed to carry a baby so your story gives me hope. How is your health now? 

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