Uterine leiomyosarcoma

Hi HazelD and welcome to the Online Community although I am sorry to see you joining us and to hear about your diagnoses and ongoing treatments.

A cancer journey can be such a stressful and challenging time but when it comes to support there is nothing better than talking with others who are in the exact same position.

The Community has various support groups (discussion rooms) so can I suggest that you consider joining our supportive Soft tissue sarcomas (I see you have joined) and Lung, secondary cancer groups. These are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.

If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.

You may want to try putting Uterine leiomyosarcoma into the search  tool near the top of the site, select anywhere and see if there are existing posts and as always you can hit reply and see if the members are still n the site.

Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Give me a shout if you need further help.

Best regards.

Hi, how are you doing?

I read your post with interest, my wife has just had a radical hysterectomy last week, after being diagnosed with atypical endometrial hyperplasia, this is a pre cancerous diagnosis but as the surgeon told us that given the biopsy is only a small tissue sample it’s common that patients with this condition 50% was quoted do concurrently have uterine cancer when full tissue analysis is done on the removed womb etc, we are some weeks away from getting the results back.

in the meantime since the first issue my wife had that led us to where we are which was November she has been suffering from a  increasingly chesty cough first thing in the morning and seems to be clearing her throat most of the day.

I had read that uterine cancer can go into the lungs albeit quite rare, but it sounds like your explanation of your position suggests the type of cancer you have is prone more to this happening.

Did you have any symptoms of it being in your lung prior to finding it?  What treatment are you getting?

I hope I am wrong but am worried sick about it.

thanks Alan 

Meant to add, after the operation my wife was also told she had a uterine fibroid 

Hi Alan,

My cancer is very rare, uterine leiomyosarcoma (uLMS). I hope this is not the case for your wife. All my symptoms were around the fibroid I was told I had. I had no coughing symptoms and only one lung met showed on my first scan post hysterectomy.

uLMS is rare and unusual. It is very aggressive and can reoccur in the original site, even after a radical hysterectomy. I have mets in my abdomen. Another place that sufferers get spread is in the lungs. I have over 10 mets in my lungs. Now some people have a hysterectomy and NEVER have a reoccurrence and live a cancer free life. I hope this is the case for your wife. Push for the results of the pathology on the operation quickly. Be an advocate don’t sit around waiting. Then get an immediate CT scan which will show if there is any sign of LMS cancer elsewhere. Blood tests do not show up this cancer, you have to be scanned. Again your wife may have a different cancer and not uLMS. No need to fear the worse till you know. As I said this is very very rare. If it is LMS then you must see a sarcoma specialist not an oncologist or gynaecologist, this will give you the best odds. And then (if uLMS) join the most amazing group which has kept me sane ‘leiomyosarcoma support and direct research foundation’ www.lmsdr.org. Through them you can be in touch with fellow warriors and their caregivers round the world, attend boot camp to learn everything about the cancer and read about long term thrivers who have survived many many years. There is hope. I’m on my second round of chemotherapy. Fingers crossed for some progress.

sending you my love and best wishes

Hazel

Hello Hazel,  thanks very much for your reply, I am very sorry to hear of your condition.

I am hoping that I am wrong about my wife.

As a matter of interest, how did your original symptoms present themselves?

FYI, at the time of my wife’s ultrasound no mention was made of the fibroid, or even after the hysteroscopy where the biopsy was taken from what we understood was from a polyp.

After the follow up to the hysteroscopy at which they suggested having the hysterectomy we received a letter which stated the size of my wife’s  uterus at the time of the ultrasound was 10.2 x6,6 x 8.9 CM, on looking into this it suggests the uterus lining was 8.9cm which is huge as most measurements I can find are in Mm and the most I can find is 22, given hers was 89mm that is huge size.

Since my post to you we have received a copy of a letter the surgeon sent to her GP outlining the recent operation for her records in which it stated her condition indicated a fibroid uterus.

I can only assume the size of 8.9cm was because of a big fibroid.

Some additional info, my wife has been on tamoxifen for 8 years following breast cancer, it seems this causes additional estrogen in the womb which is a risk for uterine cancer.

I mentioned this mainly to see if there was any parallel with your own situation.

Very interested in your comments.

Really hope you stay well.

Alan 

Hi ajc0454 

I think you may be be getting confused here. The size of the uterus itself, which is what is given on the report,  does not describe the measurement of the uterine lining, which would definitely not be 8.9cm. 

Sarah xx

Thanks, I was very sceptical but as I said the letter described the measurements as I outlined them. So given one measurement is length, one must be width, not sure how to interpret the 3rd measurement other that ‘thickness’. 

alan 

The measurements are for the actual uterus itself on the outside as it were-the size of the uterus measured when it is removed in the surgery. It does not relate to the lining of the womb, which is inside, not outside. 

Sarah xx

Hi, thanks for talking.  The letter I referred to with the measurements in said they were taken from the Ultrasound, so didn’t come from the removed uterus.  No idea what the 3rd measurement covers but given the length was shown as 10.2 Cm and the width 6.6cm hard to see ‘thickness’ was 8.9cm, that’s almost as thick as it us kind which can’t be right.  

Alan 

Long not kind sorry