Leiomyosarcoma finally diagnosed!!!

Hi Deb

All cancer situations can be different but I am very happy to share experiences. 

When I was diagnosed with LMS in 2008 I got an appointment at the Dana Farber Cancer Institute whilst visiting my husbands son who was studying in the USA. The consultant told us that the best way forward was to have full body CT scans every  3 months and surgery if there was any metastasis. This was confirmed by my consultant in Belgium. This “watch and wait” approach has been good so far for me after 6 lung operations. If chemo is used early on it may not significantly improve the outcome and then it may not be possible to be used later if surgery is not an option. 

I understand your feelings. I still get “scanxiety” after all these years. The one thing I have learned is that I needed to get on with my life and not put it on hold thinking of what might come. It takes mental energy to do this, but I was always comforted by my deceased mothers words to not worry about things you cannot control. 

I hope this response answers your question. If you have anything further please ask, there is no such thing as a stupid question. Take care and keep positive. xxx Rambo 123

Hi Rambo, thank you for your reply. It has allayed my fear somewhat. It's great to see that you're still here 13 years after your original diagnosis. I have grandsons of 4 months, 6 years and 8 years of age and can't bear the thought of not seeing them grow up. 

When you have had a scan which picks up any mets do they operate very quickly after the scan? My consultant told me that recurrence usually happens during the first two years. Was this the case for you? He also said that it tends to metastasise in the lungs. Have you had mets anywhere else?

Sorry for all the questions. Deb

Hi Deb. 

No problems about the questions, don’t be sorry. Great to hear about the 3 grandsons. 4months, 6 and 8 must be a lovely handful for you.

To answer your questions, I have only had mets in the lung. It first came after 2 years. The operations were all less than 4 weeks after the scan picked up the mets.

Also as I put in my profile they did try hormone treatment for a while as the cancer was hormone receptor positive for some years. You could ask your consultant about this if it has not been mentioned yet.

Please any question you have is worth asking. Enjoy your grandchildren, they grow up so quickly.

Take care

Rambo 123

Hi 

Can I ask what Southampton have said - I have been under Southampton for Sarcoma and their MDT is linked with London. Am on Isle of Wight myself. All scan  results etc have been over the phone via oncologist at Southsmpton

Hi Lily, do you have leiomyosarcoma or liposarcoma? I think a positive mental attitude is the way forward. I am lucky that the Christie hospital is about half an hour away from my home. I am having three monthly CT scans of my abdomen and chest in October and seeing the sarcoma consultant two weeks later. My consultant said that chemo and radiotherapy won't work for my cancer (leiomyosarcoma) so it will be three monthly scans and consultations to look for mets and if necessary they will remove them. I hate the fact that this is my new normal but I'm so sorry that your only option is paliative. Thinking about you.

I was eventually diagnosed with leiomysarcoma, the biopsy was showing 3 ltypes’ I understand.?

They have never offered chemo until now, and was on 3 monthly  checks too. Next scan is down to 2 months but I am not sure when they will offer to start the chemo. Not been offered surgery to remove the mets at any point

Such a difference in our treatment plans isn’t there.? ️

Hi

i am under Southampton Sarcome for Leiomysarcoma. Mets in small amount in lungs - from last year. 3 monthly watch n wait. Rapid spread last few months to bones, abdomen pancreas. Not had any treatment so far but now been offered chemo. It’s up to me 

Hi Lily, when you were initially diagnosed what was your stage/grade? Was the primary in your leg? I hope you are able to discuss what your options are with your family. You need to know exactly what the pros and cons are and do what is right for you. Sending you a big hug. Deb

Hi Deb

Not sure of stage initially, but they cancelled operation to remove primary (lower leg) early on as mets (6or7) had gone to lungs. I was actually at the hospital 3 days before for pre op tests when they told me I was ‘off’ the list.

I have been pain free and pretty active all along, times away in UK with family etc and bought an ebike as easier.

Am not diving into chemo but now it’s in bones, knee and hip, feel geriatric and taking paracetamol.! I am taking this next few days to decide, had echocardiogram today to check heart. So hopefully that’s ok.And it’s  in place ready

xx

Hi. I’ve just been told that I will soon have radiotherapy on my pelvic area to hopefully destroy any lurking cancer cells from the sarcoma. Then possibly chemo in 6 months for my lung mets. They want to treat the sarcoma area more urgently 

xx