LMS - Leiomyosarcoma diagnosis

Hi Janet, thx for reply. Wondering what names you didn’t get in?

After being told no primary found …MRI now reveals uterine mass 11x6 cm ? Feeling very confused why not picked up before at scans, biopsies x3 and hysteroscopy until now. Perhaps tho this is a feature of LMS … seems rather large to have been missed? Any thoughts ( until I see consultant) ….

Pat Pops

Hi Pat Pops,

It was our names I’d missed!

Your primary is the same size as my biggest tumour. I have a second smaller one in my abdomen and a small one in a lung.

Like you I had issues with diagnosis. After a hysteroscopy they said I had a polyp behind a fibroid and they tried to cut it out with the result it was then able to spread quite quickly as it was an open tumour. It was about 4 months before they were able to identify sarcoma and what type. I also had lung X-rays over 12 months and was reassured there was nothing there and then a CT scan showed there was a 1cm tumour. When I queried this I was told X-rays can’t pick up smaller tumours! Not reassuring. Therefore I know what you mean about the confusion. I must admit it seems bizarre that when knowing you had LMS in your pelvis they didn’t find the primary sooner.

Unfortunately as a rare cancer I think many consultants aren’t familiar with LMS or what to look for. I’ve joined my local cancer alliance and am pushing for assessment by scans not X-rays and reports by people who are experienced in sarcoma. If you’re not getting copies of your scan reports ask for them as you are entitled to the information.

At the start of treatment your knowledge is likely to be small and it’s been Royal Marsden who have explained to me the different lines of treatment and that these are regulated. Information is available online. For example I was given one dose of a second line treatment which was disastrous (readmitted as an emergency) and I was told by Royal Marsden that it was not suitable for LMS. The basic chemos are doxorubicin, gemcitabine, ifosfamide, dacarbazine and trabectedin. Doxorubicin is often the first line and you can have a maximum of 6 cycles. I can have unlimited cycles of dacarbazine which I’m on now as long as it’s having an impact.
Therefore if you haven’t been informed ask your consultant what they envisage as your lines of treatment (at the appropriate time).

Also if you are unsure about where treatment is going think about a second opinion. Royal Marsden are world experts and have an excellent specialist team dealing with sarcoma and have been very supportive to me. Macmillan have an excellent booklet explaining chemo fatigue as it’s not just being tired.

I realise this is complex but hope it helps in getting the treatment and support which is best for you.

Janet

Hi Janet,

thank you for your response and all the information/ advice which I appreciate.

I agree/ understand the rarefied nature of LMS and that clinicians might not recognize. I’ve had large fibroids for some years now and considered / told that they were safe/ benign.

My LMS was picked up from a bone biopsy as the initial presentation was a decreasing ability to mobilize… I am now on crutches and unable to drive due to large lyric lesion. CT scans identified fibroids but considered not to be relevant. 

Bone biopsy identified not bone cancer as was the prognosis… I am now under East Yorkshire sarcoma team who share MDT with regional sarcoma team at St James in Leeds. My consultant picked up that the metal in my 2 false hips ( not linked to my LMS) obscured a clear view via CT scan ( who knew) and so arranged an MRI. This has recently found this large uterine mass!

I am focusing on looking forward and staying positive. 

Keep well. 

Regards Pat Pops 

Hi Pat,

My wife was diagnosed with LMS early 2023 and was immediately referred to UCLH for treatment.

Her tumour was attached to her sacrum and was a fibroid type mass that had turned bad, she underwent surgery to remove the large mass, but quite quickly she started to grow another, she then underwent 7 weeks of targeted radiation therapy in London and that necrotised the mass.

Sadly, there are another 5 deposits in her abdomen, which she is undergoing chemotherapy for and one of them has grown and is now squashing her bowel causing her pain and she is now on oramorph to ease her symptoms.

In the next day or so she is being moved from hospital to a hospice for management of symptoms, after that, we’re not sure what the next move will be x

That is our experience thus far with LMS, feel free to message me if you need to chat

• Hi Nudge

Sorry to hear of this for your wife.  

I have been on morphine for 6 months now. I understand that this is common place if the LMS had got into the bone. 

I recommend you register as a member of the LMS Facebook group. 

It’s under Leiomyosarcoma and is a private group and moore informative and has more members.

Best wishes.

Hi Pat,

Thank you for your message and recommendation, I have now joined the group, plus I noticed my wife is on there too.

Thanks again