Scared - leiomyosarcoma just diagnosed

Hi Clioparrot

The whirlwind of starting on a cancer journey can be very frightening - one of the most common concerns is being sent for an "urgent referral" - until we know every possible cancer referral is tagged as urgent. What sounds to me somewhat reassuring is that the small lump had been there for a few years.

Leiomyosarcoma is quite rare - often means the doctors are keen to find out more because they will not have seen many but also means that the care tends to be centrered in special centres 

My wife's LMS came from her womb and is well spread through her body - she has had two lots of chemo and currently her cancer is rated as stable - been like that for 6 years and not causing any problems other than having to go for a check up every year. Well except that if she sees a locum doctor about anything else and she talks about having LMS the doctor will look it up on wikipedia!

<<hugs>>

Steve

Steve, thank you so, so much for replying to my post, it really has given me a much needed lift just hearing that there is hope beyond the few months that i'd assigned to myself.

I think because I'd never heard of LMS and the fact that it is so rare & individually so unique, is what makes it so very scary.

I'm so pleased to hear that your wife is still with you 6 years after diagnosis, I pray that both of us manage another 6 years at least.

May I ask what alerted the diagnosis of your wife's LMS in the womb?

Carol

Hi Cliiparrot, 

I have also been diagnosed with LMS this year and the first couple of weeks were a whirlwind if MRIs and CT scans. I had 2 operations, the first to remove what they originally thought was a cyst, the 2nd to take a wider piece out when they discovered cyst was LMS. My scan since has come back clear and I am on 4 monthly checks and yearly scans.

Src60 who has replied helped put my mind at ease when I was diagnosed, it's great to have a site like this with great people to share there experiences.

Take care

Chrissy x

Chrissy, 

I am so glad that I reached out on this site. Yourself and Src60 have really helped drag me out of the hole I'd already dug, thank you. 

Everything is so frightening, isn't it?

You say that your first operation was to remove a cyst (obviously since discovered as LMS), may I ask what part of your body the 'cyst' was, how long you'd had it and whether it was giving any pain?

Sorry for all the questions, you don't have to answer them if you'd rather not.

Much love, 

Carol x

Hi Carol

It is scary to start with, but with diagnosis and the support of the teams it gets easier.

My "cyst" was in my labia, it started as a pea in May last year and my 2 week referral got "lost" due to covid. When it great to a grape size I went back to GP and this time the referral went through. MRI scan and then an Op first week of January to remove the cyst...  then LMS found. I had no pain as the lump wasn't pressing on anything.

Happy to answer questions where I can

Love chrissy x

 Chrissy, 

Thankfully the Sarcoma MDT I have seem to be 'on the ball' and so far my support worker has been fantastic. However like she says, they are the experts on the disease but it really does help to talk to other 'patients' & families who know exactly the emotions & helplessness felt at initial diagnosis and throughout treatments.

No doubt all your fears will surface again when waiting for results of 4 mthly checks & yearly scans.......what an emotional roller-coaster we have found ourselves on. Keeping everything crossed for you that all your checks & scans stay clear for many, many years.

My MDT meet every Wednesday and if they manage to get my MRI & CT images, they will discuss next week on next plan of action.

I'll keep you informed. Please keep me updated with your 'journey' as it certainly is a massive help jyst being able to chat.

Carol x

Hi Carol, if you click on my name at the top of the message you can read my profile that explains how my wife came to her diagnosis. It was not the easiest of journeys.

<<hugs>>

Steve

Wow Steve, not only your wife, but you as well have really have had one hell of a journey.

I can relate to the deaths you had to suffer in such a short time as when I met my husband in 2000 he'd only just lost his previous wife, totally unexpectedly I met him in January and his wife had died in the November). Within 4 weeks of meeting hubby, he also lost his brother and mother.

You think that life has thrown all it can at you and then Boom!! another hand grenade gets thrown in!

I actually feel quite selfish after reading your blog, I am trying to deal with ME whilst you not only are dealing with your wife's illness, you also have your son and yourself with your own 'needs'.

The saying is true "there is somebody usually in a worse situation than you", although that seems to pale into insignificance when you are the one actually touched by trauma/unwelcome diagnosis etc.

I wish you and your family all good wishes on your onward journey. Hoping I can be as brave as you.

Carol x

Hi Clioparrot

I sometimes find some comfort/inspiration in music, a real go to for me sometimes is Bill Withers - Lean on me.

Great words, I love that. 
X