Mothers diagnosis Endometrial Stromal Sarcoma

Hi all,

Hoping someone can help me.

My mum was diagnosed with womb cancer in November. At that point the doc was confident a hysterectomy would remove the cancer so this was carried out just a few weeks after.

She then underwent a scan on her lungs just as a precaution, but told not to worry as they hadn't seen anything to cause concern.

Today she got a phonecall to say that she has a rare and aggressive form of ESS and although they are confident they removed it at the time, it's highly likely it will return. Also confirmed that should it indeed come back there are no treatment options available, the doctor doesn't feel there is any point due to its aggressive nature.

Obviously this is a massive shock and feels very "final" 

Has anyone has any experience around this? Feel helpless at the moment. She's become very depressed and can't get her mind off the thought she may not be with us much longer.

She also has very bad nerve pain that occurred around 2 weeks after the op and seems to be getting worse daily. She's been on to the doctor but to be honest they just fob her off with tablets.

Any help is greatly appreciated.

Kind Regards,

Dean

  • Hello Dean

    I'm sorry to hear about the news that your Mum was given following her surgery and further tests. I can imagine that it's come as a blow to you all and it's understandable that your Mum is feeling very depressed at the moment. 

    It's not uncommon to experience some pain following a hysterectomy but if it's not settling or improving then do support your Mum in getting back in touch with the GP to try and improve things. 

    I've had a look through the forum and although there are quite a few posts where ESS is mentioned we don't have any members currently active living who have been given the same diagnosis. You might find it helpful to give our team of nurses a call. I'm sure they will be able to talk things through with you and offer some advice and support. If you would like to talk to them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    Best wishes, 
    Jenn
    Cancer Chat moderator