Hi folks, I'm a 40 years old lady living in central London.
I've recently been diagnosed with a very rare cancer, low grade endometrial stromal sarcoma, stage 4b with several metastasis.
Last September I had total hysterectomy (my ovaries were removed), so on top of incurable cancer I've got menopause as well on my plate.
My sarcoma specialist said I have "many more" years to live but so far I haven't been brave enough to ask him how many years roughly I've got left. Anyway "many more years ahead" sounds hardly reassuring given the super scary diagnosis. He said my cancer can and has already shrunk since I got the ovaries removed (it feeds on oestrogens produced by the ovaries) but will never disappear completely, I'll have to live with it.
Needless to say at the moment I'm very nervous, worried and scared. I'm not working at the moment and I don't know what to do with my life, I'm unable to make any plans.
Also I'm in pain, I'm taking several painkillers, I've got "warm chills" through my back, pain in my middle back and sacrum and the back of my head feels like it's in a vise grip. Fortunately I've been referred to a holistic medical care team who should be able to see me soon and help me manage these symptoms.
If you're going/went through something similar please get in touch! I'm happy to meet face to face, over the phone or via the internet.
Looking forward to hearing from you, have a nice day!
Hi Valita and welcome to the Online Community, a Community that no one ever really plans to see themselves joining, and so sorry to hear about your ESS diagnosis.
An incurable cancer diagnosis brings a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.
I have a totally different type of incurable cancer but the Community has various support groups that you may find helpful so can I direct you to our Living with incurable cancer - incurable patients only and our Womb (uterus) cancer groups, as these are the groups where you will connect with others walking the same journey.
Follow the links I've created above then choose ‘click to join' when the page opens.
You can then introduce yourself and post questions selecting '+New' or '+' (depending on your device) you can also join in with existing discussions by clicking on 'reply'.
Its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear.
The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information.
You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Our Online Information and Support Section is a good place to find information covering diagnosis, treatments and pages covering most types of cancers.
All the very best.
Hi again, I had a quick look in the Living with incurable cancer - incurable patients only group and I can’t see if you have put up a post?
Yes, I could join the group but after 21 years being on my blood cancer journey I am happy living in the now not in the ‘what if’s’
I actually found remission in Sep 2016 for the first time in 17 years which is amazing as back in 1999 I was not only incurable but would never see remission.... so living the dream at the moment and yes, living a normal life as much as we can in these COVID times.
You can hit my community nameThehighlander and see my story. Do put up some posts in the group links above and let’s look for others to connect with you.
