Any endometrial stromal sarcoma survisors out there?

Hi Valita. I was diagnosed with endometrial stromal sarcoma when I was 39. I’m now 51. If you have a look at my profile you can see the journey I’ve been on. 

You say you’ve had a hysterectomy, but are you on any hormone treatment to block the oestrogen? Our cancer is very rare, any although it is incurable, it is treatable. 

Being put into medical menopause is harsh. Some of the symptoms you are experiencing could well be because of the drop in hormones. 

I’ll send you a friend request, please feel free to message me with any questions. 

Hi Valita,

I too was diagnosed with LGESS following a hysterectomy in 2019 when i was 40.  It came as a complete shock to myself and my consultants as we were all of the belief that it had actually been an adenomyoma and not in any way cancerous, and had been since 2017 when i had my first consultation.  Unfortunately, like yourself, i also have multiple lung metastasis and have had to deal with medical menopause and the other side effects of the treatments. I am now on both Letrozole and Zoladex to stop Oestrogen production.  

I can stay that 2 years ago i was in exactly the same place you are emotionally and physically, with the same worries and uncertainties. But 2 years on, i am feeling fine, albeit still suffering with the dreaded hot flushes (acupuncture really helped, but is not an option due to covid restrictions), my life is my own and other then the 3 monthly checks, I am in control, and not my cancer.

There is hope  and there is support.  Be strong and stay positive

x

Hi Anon19, you have scans every 3 months? I do them every 6 months.

Feeling quite defeated at the moment... At the end of March I fell badly at work and landed on my hip. I thought it was just a big contusion but no, I actually dislocated and fractured my right hip, I had to get surgery and I'll be on crutches till -/+ May 10th...

I've been diagnosed with osteoporosis too, that's probably why I managed to fracture a bone just by falling stupidly while walking fast. I recently had a special calcium injection, I hope it's going to help strengthen my weak bones.

Since I've always been thin I've been told probably I've always had slightly weak bones but I'm convinced hysterectomy and removing the ovaries really deteriorated my bone density; I suffered with crazy intense back pain after hysterectomy for about 3 months, I thought it was bone cancer (mercifully I was wrong). To this day the oncologist surgeon and rheumatologist have no explanation for it, I did all sorts of scans.

Anyway, yes, enough with feeling sorry for myself, it's pretty pointless, I've got to try to stay strong and positive.

Thanks for you kind and reassuring words, take care!

Hi,

sorry to hear about your diagnosis and you are so young to have to cope with all this.

Hooefully your hip will mend OK. I have broken bones due to osteoporosis as did my mother. I take calcium tablets she took injections to strengthen her bones.

I hope they can help,your pain. At least the osteoporosis has been diagnosed. My mother broke many bones before they diagnosed and started treating it. 
I am glad there are others with your type of cancer you can talk to. 
I have lung and base of skull metastases for a long time now with drug treatment to slow things down xxx

Valita I am so sorry to hear that you fell and fractured your hip! Just when things were starting to get back to some normality for you too! I am so sad to hear this.

I have osteopenia from taking anastrozole and Zoledex so I am on calcium and vitamin D tablets, and I also have 6 monthly injections of denosumab to strengthen the bones. I used to have terrible hip pain, but this has eased since starting the denosumab so I hope this will help with your back pain also. 

I hope the hip heals well for you, and you can get rid of the crutches soon.  Please take care. No more rushing around. X