Uterine sarcoma

Hi @jane,

My wife's Leiomyosarcoma was only diagnosed many months after an emergency hysterectomy that was given for another reason altogher.

She has had two sets of chemotherapy and the second one caused her cancer to become stable. We have been in that happy state now for over six years and only get to go for a checkup about once a year.

<<hugs>>

Steve

1. Hi Steve. I’ve no idea why I wasn’t alerted, but only just seen your reply. Thank you That must have been very difficult for you both, especially finding out afterwards, as it is supposedly very rare. Had her cancer spread any further? That sounds promising, and has given me some hope. I hope you are both still keeping well. You have been through some very tough times, I see. I read your profile. It sounds like you are doing incredibly well, and still keeping going. I’m very low at the moment as cannot see anything positive, I have my hysterectomy on Wednesday 4th August. Your message has lifted my spirits today, thank you 

jane x 

Me again, sorry, you’d already said it had spread to your wife’s lungs. 
I read it again. 
big hugs to you both x 

Hi Jane,

There are colleagues at work who call us inspirational - well cannot say we ever actually tried to be that. Some who say how do you cope, that can feel a little bit hard but then perhaps they never saw me crying my eyes out. Just very glad to have found some kind of support network that helps.

We do have a group here Laughter is the best medicine - Discussion Forum and sometimes that can help - even with a bit of black humour at times.

Do like your signature though - just keep swimming - sounds so true.

<<hugs>>

Steve

Hi Steve 

mot sounds like you are very inspirational. But as you say, people don’t see the tears, just the brave face. It’s a hard balance to keep and I get it the wrong way round sometimes. 
I like a bit of dark humour, but I think I’m annoying everyone with it. It’s hard to know how to be, isn’t it. 
I can’t see that signature and can’t take credit for it.  I looked at my profile and noticed that I had someone else’s on there, strangely, wasn’t my words at all. So I deleted it and started again. Bit of a strange glitch.

Jane 

hugs  

Hi Jane

I've just had a hysterectomy as my fibroid was growing and I'm peri-menopausal. The pathology showed a diagnosis of uterine sarcoma. I have a CT scan on Friday to check if it has spread. I'm very scared and don't yet understand the possible impact of the news. So any support or information that can give me a better understanding of what I'm dealing with is welcome! 

Hi Debs. 
good luck with your CT scan. Unfortunately mine showed a secondary lung cancer, but fingers crossed for you. Let me know how it goes. I’m currently in hospital, had my hysterectomy on Wednesday. They have removed the whole sarcoma and told me that was over 90% of the cancer, now gone. Just my lungs to deal with, but she told me that they are much easier to treat than the sarcoma, and that, the sarcoma had to go!

I don’t know anymore than this, but will go to Southampton specialist unit for some kind of chemo. Very scared but glad the evil lump has gone 

good luck and feel free to keep in touch as these are very rare.

best of luck

• jane xxx 

Hi Jane, what was the outcome from the biopsy on your thigh? 

I hope you are recovering well from the hysterectomy, and your treatment can start soon to sort the lung mets. My lung mets were initially treated with radiotherapy, and I am now on hormone treatment. Did you have chemo before for your thyroid cancer? x 

Hi

i haven’t had biopsy results yet, getting them Friday I think. It’s biopsy on my fibroid, not thigh. 
im slowly getting better thank you, was a big operation, with blood transfusions needed. 
I had radiotherapy for my thyroid cancer, and this worked well, had no recurrence. 
hoping to find out Friday what they are going to do regarding my lungs, doctor told me the other day that they may not respond to chemo. Wasn’t very inspiring. Just read your story, you’ve not had an easy time, but im glad to see you are now stable. They are checking to see if my fibroid is hormone related, and won’t give me HRT if so. Your story has helped me understand it better, although a very tough time for you. 
Xxx

Sorry Jane, I thought we had spoken before about a biopsy on your leg? I’ll reply in that post to bump it up so you can see it x