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I have just been told I have a cancer called sarcoma.

alemapailem1954
Posted by

Hi, I'm new to the community and don't know anything about the cancer I have, other than it is a rare form of cancer.

Can anyone help me to understand.

Thanks

Alemapailem1954
Thehighlander
Posted by

Hi  and welcome to the Online Community but so sorry to see you finding us.

These early days and are confusing times as you find out more about what this journey looks like and talking with folks who understand can help.

I have no understanding of Soft Tissue Sarcomas but follow this link to the forum covering this type of cancer and you can connect with people who understand.

Just hit the 'Start a Discussion' tab and introduce yourself to these folks.

All the best in your journey.

Mike - Thehighlander

Some journeys take us far from home but some adventures lead us to our destiny CS Lewis

SCT NHL TCell

Bodach
Posted by

Welcome to the Mac online community family and know that this a place you didn't want to come to but unfortunately your journey has brought you to us and we will help in any way we can

I am assuming from your message that you have not been told which type of sarcoma that you been diagnosed with.

It may surprise you to read the following

There are around 100 different sub-types of sarcoma.

Sarcomas commonly affect the arms, legs and trunk. They also appear in the stomach and intestines as well as behind the abdomen (retroperitoneal sarcomas) and the female reproductive system (gynaecological sarcomas).

  • Bone sarcomas affect about 670 people in the UK each year. Not all bone cancers will be sarcomas.
  • Soft tissue sarcomas can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels.  Soft tissue sarcomas include:
    • GIST is a common type of sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines.
    • Gynaecological sarcomas (sometimes shortened to gynae sarcomas) occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.
    • Retroperitoneal sarcomas occur in the retroperitoneum. This is an area behind the peritoneum, the lining of the abdominal space that covers the abdominal organs. The retroperitoneum is deep in the abdomen and pelvis, behind the abdominal lining, where organs such as the major blood vessels, kidneys, pancreas and bladder are located.

If you have been told which type you have perhaps you could come back to us and let us know and we will be able to direct you to one of our groups where you can join and start to meet others with same type as yourself.

It is always a worrying time when you have just been diagnosed and is often very difficult to absorb information being given never mind trying to find the right questions you should be asking about your treatment. We always recommend going with a friend or relative to appointments and they can be your extra pair of ears and note everything being said to help you fully understand later on what you have been told.

I hope that you will be able to come back and give some more information about yourself to enable the members to help you, advise you and give you support.

Ian

 Ileostomy,Colostomy and Stoma Support Group

LIVING WITH A ST● MA

What is a Community Champion?

Why not take a moment to complete your profile it really helps in answering your questions  How to update your PROFILE

You can always contact the Macmillan Support line on 0808 808 0000 Monday to Friday 9am to 8pm (not weekends or Bank Holidays) if you need to speak to someone in confidence. It's free from mobiles and landlines.

alemapailem1954
Posted by

Thank you for your reply and link. You are a very upbeat person and have gone through so so much in your life, but still here to tell your story.

I hope I can gain just a fraction of your strength and positivity.

The mind is my weakest link at the moment, but I intend to change that ASAP.

All the best Mike

Alemapailem1954
alemapailem1954
Posted by

Thanks Ian for your reply. My cancer is Liposarcoma, all I have been told us that it is a rare cancer.

The growth is on a muscle in the pelvis. That's all I know as the Consultant didn't give me anymore information.

Thanks for your time.

Alemapailem1954
Bodach
Posted by

Thanks for the update and I note that you followed my fellow champion  Mikes advice and you have already started a new discussion in the Soft tissue sarcomas Group and I hope you will get some replies soon.


You maybe interested in this discussion

LINK click on green text


And the reply from 

You are very welcome to contact our nurses in our Ask a nurse section and ask any questions you need answers to.

I do believe that you will be allocated shortly with a specialist cancer nurse who will be able to guide you through the next steps of your treatment.

If we can be of any further help please dont hesitate to come back to us and ask as many questions as you want.

Ian

CLICKING ON ANY OF THE GREEN TEXT OPENS A NEW PAGE 

 Ileostomy,Colostomy and Stoma Support Group

LIVING WITH A ST● MA

What is a Community Champion?

Why not take a moment to complete your profile it really helps in answering your questions  How to update your PROFILE

You can always contact the Macmillan Support line on 0808 808 0000 Monday to Friday 9am to 8pm (not weekends or Bank Holidays) if you need to speak to someone in confidence. It's free from mobiles and landlines.