Anyone else have a uterine sarcoma?

[gardennut]

I'm new here and looking for info. Does anyone else have a uterine sarcoma - also called leiomyosarcoma? Mine was discovered following a full hysterectomy (for a large ovarian cyst) and the removal of 2 inflamed lymph nodes. It seems to be quite rare and I've been told doesn't respond to either radio therapy or chemotherapy, but I will most likely have hormone tablets and wait and see. I would love to hear from someone with a similar experience.

[Yoshbosh]

Hi Gardennut,

A friend of mine has an ovarian leiomyosarcoma, also incredibly rare. Hers has been managed by surgery alone too. She has had two recurrences, but again, both have been treated with surgery and she’s doing really well. I think it’s about 10 years since she was diagnosed.

Vicki

[gardennut in reply to Yoshbosh]

Thanks Vicky. That makes me feel a whole lot better. I don't really mind having surgery. I was actually quite pleased to be told that chemotherapy doesn't work for this type of cancer, though. I think I can cope OK with wait and see because once you have had cancer you always feel a bit wait and see anyway.

[Tesla_7US]

Gardennut, Have you ever taken aromatase inhibitors? I was prescribed anastrozole/Arimidex after my mastectomy. I had serious side effects from this drug. While researching it I found it can greatly (like over 200%) increase your chance for developing uterine sarcoma. I stopped taking it. 9 years later I was diagnosed with 3C OC. I am BRCA negative.

[gardennut in reply to Tesla_7US]

I took Tamoxifen for 9 years and gather that this is a risk factor too.

[Tesla_7US in reply to gardennut]

Biomedical Publications is a good source for peer reviewed research. They have the most up to date study results. My heart goes out to you. I am sending you positive energy!😊

[gardennut in reply to Tesla_7US]

Thank you, Tesla. I will have a look at that. To be honest the outcome wasn't as bad as I thought it would be, as I was expecting to have stomach or lung cancer, because of the situation of the affected nodes, though I must say my consultant was surprised when I said that, so maybe I had it all wrong!