Uterine leiomyosarcoma

Hi Hazel 

I have leiomyosarcoma unfortunately. 

Regards 

Kathryn 

Hi Kathryn,

Well its a small exclusive club that no one wants to Join! You are the first person to reach out to me with the same diagnosis. I am a member of a group on Facebook. This has been the only way I have connected with other people with the same condition. It was also how I learnt about my condition and in a way, mentally prepared myself for living with cancer from now on. This group also allowed me to search on specific topics to find out more information and to keep up with the latest research and trials. We are so far behind in the UK. Still reading isn't the same as experiencing and chemo is hard. I have just reached my one year cancerversary. Where are you on your journey?

Sending you a huge hug

Hazel x

Hi Hazel

Thanks for your message.  I totally agree with what you what a n awful card we have been dealt. My journey started over 2 years ago following  the cremona of a massive fibroid and a hysterectomy.   I was NED for about 5  months  then in May 2021 they discovered a tumour in my clavicle.  I had my clavicle removed in June 21 followed by 33 sessions of radiotherapy.   I was NED then in November this year my world fell apart and following a PET scan it showed I had mets on my spine, and in my lungs.  I had radiotherapy on my spine in December  and was on watch and wait but in Jan developed terrible pain down by left leg and  found out last weeek that ghis is caused by the spread on my lower spine.  The radiotherapy in December didn't work on my upper spine so because of that I need to start chemo on 23rd.  I had more radiotherapy last week on the other areas so keeping everything crossed that this has worked.  Like you I am getting my head around living with this and praying for stability.   I am under UCLH in London so in very good hands.  How about you ? Hopefully we can support eachother through. Xxx

Hi Kathryn,

I'm with the sarcoma team at the Royal Marsden in London, specifically Professor Robin Jones. Are you under a sarcoma specialist too? it would be god to keep in touch. My next chemo is on Monday, Doxorubicin. Do you know which chemo you are getting yet?

Hi You are in fab hands too. I was under Beatrice Seddon but she has retired . I am now under Mr Ahmed they are Sarcoma specialists and I think they work closely with the Marsden. Yes same as you start on 23rd at Southend which is local to me. .  Let's support eachother through this journey. I will see if I can in box you my number xxx

hi hope youre doing ok ? can i just ask did you have radiotherapy to youre lungs ? x

Hi Keen

Hope you are ok 

No I had radiotherapy to my spine mets .Starting Chemo on Thursday. 

Regards

Kathryn

K

I also have leiomyosarcoma. It was in a fibroid stage 1b total hysterectomy in July 21. Last week I was told that I now have mets on my Iliac artery and another in my psaos muscle in my pelvis. The only thing they can offer is palliative chemo. I think I'm going to be on doxorubicin and have had my heart scan in preparation. I have three grown up children and three grandsons and I don't want to leave them. The whole family is devastated. I'm going to Majorca on the 1st of April with my husband, eldest daughter and her two autistic sons so I'll be starting chemo on the 11th of April. I'm under Dr Lee at the christie in Manchester. I'm sorry that we are all in this horrible situation but it's nice to know that there's other people who understand. Take care, Deb

Deborino So sorry to hear this. Please don't give up hope there are alot of people who have achieved shrinkage and stability on palliative chemo. I have just had by 2nd dose of doxorubicin and so far tolerated it pretty we fingers crossed it continues.  I have lost all my hair though but have a few heads wraps and scarves.  There is a good charity call Look Good Feel Great which run on line sessions which are good.  Enjoy your holiday my friend is on Majorca at the moment and said weather is nice. Can I ask did you get travel insurance OK?

Take care and stay positive where there is treatment there is hope.

Kathryn x

Hi Hazel,

I also have Leiomyosarcoma, mine was a lump in my vulva which following 2 surgeries I am NCD. I've just had my 3rd CT scan this week, they have been monitoring 2 nodes on my lungs which I'm hoping haven't changed. My details are in my profile, happy to connect and chat on this strange journey we're on

Take care

Chrissy x