I had a hysterectomy to remove growing fibroids and was diagnosed with Leiomyosarcoma stage III, that was five weeks ago finally booked in for further scans and oncology appointments.
It already feels like an incredibly long journey, they are indicating I will have to have chemo...I think the scariest thing is being that this is a rare cancer - and then feeling along with no positive narrative to refer to. I have read a few research papers hoping for reassurance - unfortunately there are not enough to give reassurance.
So, I am here. It feels lonely. Its all so very new.
I am sorry to read about your experience. I went to my GP about what I assumed were fibroids over five years ago now. Within a few weeks I’d been diagnosed with stage 3 uterine serous carcinoma, I was post hysterectomy and looking at chemo. I think I can imagine a little of what you’re going through.
You’re right in that the cancer you have is rare and no, I imagine the research papers don’t offer much hope. I can understand the urge to research but an important lesson for me was learning when to step back from Dr Google. Reading the same depressing stats again and again merely created an anxiety feedback loop (I’m feeling anxious; knowledge is power; I’ll research and get some knowledge; OMG I was right to be anxious). There came a point that I needed to stop beating my head against a wall.
The hope I can offer is that you’re not alone and there are plenty of people here in this community who have been through something similar. The best way to find them is by joining a group. As I understand it, a uterine sarcoma differs from endometrial cancer in that it’s a cancer of the muscle of the womb rather than the lining of the womb but both are treated the same. The womb cancer group is very active and full of wonderful women who offer a lot of support and experience of going through treatment.
Don’t forget to explore the other resources here on the Macmillan website. There’s a support line where you can talk to someone one-to-one and lots of info about how to cope emotionally.
I wish you all the best as you start on the next phase of treatment
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