Hello everyone, new member here with LMS

Good Morning BritinitalywithLMS

I am sorry to hear about your diagnosis of uterine leiomyosarcoma. I also have had a rare womb cancer but a different type. There are several apparently. If you want to see my journey please feel free to click on my profile. 

With leiomyosarcoma being a rare cancer, although it is fine for you to post on the soft tissue sarcoma forum and hopefully you may find some ladies with a similar diagnosis, can I recommend that you join the womb cancer forum.

There are ladies on there with the same diagnosis as you. If you go to the forum and type in leiomyosarcoma in the search bar, posts will come up that may be of interest to you. I will pop a link here in case that is something that would help.

(+) Womb (uterus) cancer forum - Macmillan Online Community

I see that you have had your regular CT scan and are seeing the oncologist next week. It is always a worrying time waiting for the test results and having appointments. I am currently on 12 weekly checks and although I know that they are for my own good I still get very anxious about them. I hope that your appointment goes well.

Please don't feel alone as I am sure that connecting with others with leiomyosarcoma and other rare womb cancers on the womb cancer forum will help. 

If there is anything else you need, please do not hesitate to ask.

Jane

Hi BritinitalywithLMS 

I know what you mean about feeling something of an outsider with LMS, my wife was diagnosed over 10 years ago. In her case they believe it probably started with a fibroid but was masked because she also had pyometra and the later resulted in her having an emergency hysterectomy.

When LMS was eventually diagnosed after a biopsy of a lymph node, when we were told Leiomyosarcoma it was not obvious to me it even was cancer.

Of course just having cancer does not make us immune to all the other health issues out there, indeed with stress we can actually become more susceptible to other forms of infection and illness. Lack of sleep is a real health problem in its own right.

There is some more useful information on the sarcoma uk website here though I have often seen a locum GP look it up on wikipedia..

Janice had two rounds of chemotherapy and the second one seems to have put the cancer to sleep - she has had no evidence of progression now for over 8 years and the oncologist is now talking of discharging her back to GP care unless something else happens, Janice is quite happy to say she is living with cancer rather than anything else.

Anyway - while we might wish nobody else ended up here welcome to our very special family.

<<hugs>>

Steve

Dear Jane,

Thank you so much for writing and suggesting the womb cancer forum. I shall take a look. I'm still feeling new here and am trying to get familiar with how to navigate my way around. So far everyone has been so kind and helpful. It seems like a very supportive community. Thanks for sharing about how you too feel anxious before the 12 weekly check ups. I've always felt anxious but this is the first time I've had undiagnosed health issues in the run up to the checks so I suppose that's why I'm feeling it more than usual this time. 

Thank you again for your kindness and I wish you all the best.

Rebecca

Dear Steve,

Thanks for reaching out and telling me about your wife's story. I'm really pleased to read Janice is doing so well. I hope you too have taken care of yourself health-wise over these years as I know my diagnosis has taken a toll on my partner's health. And you are so right about sleep deficiency which seems to be a catch 22 situation sometimes. I only wish my partner spoke English so he could find a place like this to speak to others going through the same thing. Here in Italy, I haven't found anywhere like this yet. I shall take a look at the UK sarcoma website, thanks. So far, most of what I've read about LMS is from an American group. I have just started getting their newsletter and I discovered it's LMS awareness day on the 15th July and in October there is an LMS conference in London. 

A big hug to you and Janice!

Rebecca

My wife was diagnosed after a myomectomy procedure, what was thought to be a fibroid.

Your story gives us hope that we should continue fighting it and go through treatments as recommended by our oncologist. Within 4 weeks we are going for a 2nd surgery doing hysterectomy.

We are hoping that metastasis has not happened but it was a large 30cm tumour removed.

Dear Ian, 

LMS is often hard to diagnose so it's good that you and your wife and the oncologists know what you are dealing with and are already proceeding with further surgery and treatment.

I have put details of my diagnosis and treatment on my profile in case it's of any help but, bear in mind, I'm not in the UK so treatment may vary from place to place.

Sending you both all my best wishes and positive energy.