Hello I have had a Retroperitoneal Leiomyosarcoma

Last time I visited this forum, the most recent post was 3 or 4 years old. I was encouraged to visit again and was surprised to see more posts. 

For those of you who may not be aware as only 20000 of us are diagnosed each year and that is all sarcomas not just our individual ones. Mine was along my spine and sticking its tongue into my inferior vena cava ( which is your main vein  travelling up the along the spine taking blood back to the lungs). 

As I am recovering from my surgery, it is everything I struggle with along with the nag of it coming back. This is really just to say hello 

  • Hi

    We have managed to build up a little club for LMS - in my case of course it is with my wife rather than me.

    Janice's is not going away - but it is stable and we will take that. Lots of secondaries in her lungs - CT scan lights up like a christmas tree. Two different types of chemo though and now 6 years and counting of living with cancer.

    Great wonder is when she sees a locum doctor and says I have Leiomyosarcoma - they almost always reach for wikipedia.



  • So sorry to read re Janice, glad she is stable but can’t be nice living with it. 

    just reread my last CT report, High Risk sarcoma, grade 3 it was, next CT towards end of September.  I was diagnosed just 21st July last year, had to get fitter and managed to lose 10% of my body weight pre surgery. I am back to that and more, I keep chipping away at it. 
    my problem is that I was diagnosed with Fibromyalgia in 2011, so managing pain since the operation has been difficult and the fatigue. I am trying to be more active however my thyroid is now struggling, and having Trigeminal pains in my head and left eye. Have not been able to drive for years now, the chronic and acute illness just robs your energy, independence and zest for life. 
    it is a problem with locum GP’s and my GP keeps changing. We have moved to a bungalow and at first had a brilliant GP for two months, she left suddenly, the next just unprofessional and rude, finally get a good one and she leaves in September.  You see a different doctor and they don’t even read a summary of your notes. So frustrating. 
    take care both of you Blush

  • Hi Rua, I had/have? Leiomyosarcoma in a fibroid and had a total open hysterectomy on the 13th of July. It was stage 1a grade 2. I don't know whether to say I have cancer or had cancer as it has all gone. My abdomen and chest CT's were clear but due to the cancer being so aggressive I've been referred to the sarcoma team at the Christie hospital in Manchester. They were involved in the original diagnosis but I haven't met the team yet. My appointment is on the 7th September. They will make a decision whether I need adjuvant therapy or not. I too have fibromyalgia and an underactive thyroid due to radioiodine therapy. I am type 2 diabetic and have non alcoholic cirrhosis of the liver which has had a massive effect on my quality of life. I agree with you about the GP surgery. I had a great GP who died then got another but even before covid he was only working 3 days a week. Now you don't even see a doctor, it's all done over the phone. I rang before the whole cancer thing started and was diagnosed with pleurisy without even seeing anyone! 

  • Hi, unsure if this is the right way to go about things.

    My mum was diagnosed with this just yesterday, originating in her fibroid. It has been a very frustrating and upsetting period as my mum has been fighting to get the right help since March. She had many trips to the doctors and was in and out of hospital in July. She was pushing and repeatedly told them she knew something was wrong with her, but kept getting ignored even with her efforts (I dread to think what happens to patients that don't push). When she finally coughed up blood and then vomited blood they finally decided to do the CT scan she desperately needed, which was 31st July. 

    Hers is unfortunately is metastatic and as it is an aggressive cancer, she was immediately referred to Weston Park in Sheffield with a Sarcoma specialist. She was told just an hour ago the heart breaking news that is it not curable but treatable, on top of this was she is 'borderline' for chemotherapy, after going through the assessment unit. She was looking forward to having chemotherapy when she was told this was an option over the phone yesterday (I know this sounds unusual, but she has been fighting since March). 

    The sarcoma oncologist is on annual leave and they are going to discuss her case at their MDT tomorrow, but the oncologist who was telling us this didn't sound very confident there was going to be treatment (from reading between the lines). There was a delay in getting biopsy results and I can't help but feel if this was just a week ago, my mum would be receiving her chemotherapy and getting on with treatment. 

    I don't want to be angry with the NHS, as I understand all they do. I am angry that the service has been chronically underfunded and patients like my mum suffer delays due to this. 

    I apologise for dumping this information but I'm distraught as I'm in my 20s and my mum's in her 50s and I keep getting told by friends 'youll manage if the worst happens don't worry' this is coming from people who aren't very close to their own mum's. I have always been incredibly close to my mum. In recent years her and my dad had only just started to really get to enjoy life and have some experiences and were really focussing on enjoying their life. 

    I'm just in pieces knowing she won't live to see important milestones in my life as well, I was due to start a degree in Therapeutic Radiography and Oncology in September and then graduate entry medicine to specialise in a specific area of oncology. I wanted her to live to see me achieve something, but her only want is for me and my sister to be happy whatever that means for us individually.

    I just don't know how to process I may live the majority of my life without the most important person in my world there.

    I know as this isn't a patient experience this may not be best placed here, but I am finding this forum difficult to navigate!

  • I'm so sorry to hear your heartbreaking post. I went to A&E at the end of may with terrible stomach and back pain. I was told that because there was blood in my urine it was a kidney stone. Take painkillers and come back if it gets worse. It did so I went back the next day. They thought appendicitis and sent me for a CT scan at 2 am. I was woken by a doctor who said that there was a cyst on my uterus so sent me straight to the gynae ward. The next day I had an internal ultrasound and biopsy. The next day they said it was probably endometrial cancer. MRI a few days later and a MDT with the Christie hospital they told me it was a cancerous fibroid. I had a total hysterectomy on the 13th July. When I came round my surgeon said that there was no cancer. A week and a half later I got a phone call saying it was leiomyosarcoma. Luckily it came out whole but I have lymphovascular space invasion. I am seeing the sarcoma team at the Christie on the 7th September when I will find out if I need adjuvant therapy or just monitoring. As you know leiomyosarcoma is extremely rare and very aggressive so I'm worried sick. My children and husband are my world and I know that they will struggle to cope without me.

    My daughter's are 35 and 31 and my son is 32. My youngest daughter is a scientist and is desperately researching but told me not to Google! My grandsons are all under 8 and I just want to see them grow up.

    I think you should still do your degree if possible. It will make your mum so proud to see you working towards a fulfilling and incredibly important career. I hope you, your sister and parents can make wonderful memories and that your mum stays with you for as long as possible.

    Big hugs, Deb xx