Leiomyosarcoma

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Hi, I have recently been diagnosed with leiomyosarcoma of the abdomen and being seen at the Royal Marsden. Because of oestrogen and progesterone markers they have put me on Letrozole and do not intend to operate in the near future. I wondered if there was anyone on the forum in the same situation and how they are coping with the drug. I also get a lot of abdominal fluid that needs to be drained. Wishing you all well. 

  • Hi  and a very warm welcome to the Community but sorry to hear about your diagnoses.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

    This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Sarcoma support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group please click on the link below…….

            Soft tissue sarcomas

    …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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