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High grade stromal sarcoma, shocked and anxious!

JB-25
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Hello, I have been just diagnosed with high grade stromal sarcoma.  I am in absolute shock!  I had a hysterectomy 10 months ago because I had multiple fibroids and had heavy bleeding.  After hystereomy histology results showed that all clear and no cancer. I was living for 10 months without any problems,  symptoms.  And few weeks ago I had unexplainable bleeding,  went to A&E department where they found the mass on the place where uterus was. After biopsy they said it's sarcoma. Also they done Pet scan and sarcoma spread to lungs and lymph nodes. I can't stop crying. I am 48 years old  I have my lovely aughters 9 years old. I can believe! I have been referred to the hospital sarcoma unit, and my first appointment in 2 days. Is anyone here had a same diagnosis please? Or any advice? I will l be so grateful.

thank you for reading 

Regards, Jelena 

  • Welcome to the forum Jelena although I'm so sorry to hear you've been diagnosed with a high grade stromal sarcoma after having a hysterectomy 10 months ago.

    You must be contending with a lot of thoughts and emotions right now, but our community are here for you Jelena and I'm sure some of our members will be along soon to offer you some comfort and support.

    I can see from your post that you have your first appointment at the sarcoma unit today. I'm not sure what time this will be, but I just wanted to wish you the very best of luck.

    If you have any questions or just want to talk things through with someone afterwards, then do give our cancer nurses a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m and they will do all they can to support you and address any other concerns you may have at this time.

    We're thinking of you Jelena and will be here to support you on your cancer journey.

    Kind regards,

    Steph, Cancer Chat Moderator

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    Hello Jelena. I am sorry to hear that you've had that diagnosis and the fact that this is a rare cancer makes it feel worse! I was diagnosed with low grade endometrial stromal sarcoma in February 2018. I was not sure what to expect at all. I am fortunate in that my tumours are oestrogen positive. I take a Letrozole tablet daily and have Zolodex injections every 3 months to suppress my oestrogen levels as I still have my ovaries. My tumours had all grown my abdomen and not in my uterus. I know that high grade ESS can behave differently to low grade and the treatment may be different. I recommend joining the Facebook group Endometrial Stromal Sarcoma (ESS) Support Group. This group has both low grade and high grade patients from all over the world who are dealing with this rare cancer. Once you find the page you can ask to be invited to the group and can share your story on there. This is a very helpful group and sometimes ladies on their post links to more recent research. There are also a few ladies from the UK on there. It may also be worth looking at the Sarcoma UK website. You are not alone! 

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