Retroperitoneal sarcoma

My mother has suspected sarcoma from suspected ovarian to now this after seeing the ct scan. Has anyone else had this diagnoses? From what I have seen it's very rare and I'm scared! Google has not been kind with this. Any help or advice please xxx

[85live4ever]

Hi 1ora, I don't think Google is kind with any thing like this. I hope someone on here can help you.

There is a help line on here & they are very helpful. Take care Cindyxx

[Purple-iris]

Hi

Am so sorry you are going through this and can imagine how worried you are about your mum , especially after losing your dad to cancer . My advise would be to stay off google most of info is out of date. I was diagnosed a year ago with stage 4 serous high grade OC with spread to peritoneum , had surgery and chemo and am still here , enjoying life , google would have had me dead and buried 6 months ago !

As you mention 'suspected ' try to wait for confirmation of diagnosis and then ask Drs to answer your questions . Write them down so you don't forget .

If you want more info in the meantime stick to professional sites like Macmillan or sarcoma.org.uk . If it is confirmed sarcoma.org have a list of centres of excellence which may be useful if you what a second opinion to put your mind at rest she has the best treatment plan .

Remember there is always hope and we are all individuals and whatever the diagnosis all respond differently to treatment. Sending you a big hug and best wishes for you and your mum.

Try and live in the moment and do some fun things together, even if it is just sitting down and escaping in a good movie . My daughters favourite is still Frozen and she is 21 ! Had such a laugh when we watched it when I was having chemo. I wore the cod cap and my head was literally frozen ! Still managed to join in with the songs . Lol 😀

Love and best wishes Kim x 💜

[Purple-iris in reply to Purple-iris]

Yes forgot the Ovacome helpline . Give them a call. Kim x

[OvacomeSupport Partner My Ovacome Team]

Dear 1ora

I'm sorry you and your mother are having such a worrying time.The other forum members have given you good advice to stay away from Google; remember that anyone can put anything on the internet, and that statistics are always out of date because they have to look backwards and cannot represent the current realities of medical treatment. They also can never tell you what will happen to an individual.

If your mum's diagnosis is confirmed as an ovarian sarcoma, then a reliable source of information is Sarcoma UK, the charity for all types of sarcoma. they have information on gynaecological sarcomas on their website here: sarcoma.org.uk/sarcoma-type...

They also have a helpline you can contact on phone: [phone] email: [e-mail].

You can also contact me on [e-mail] or 0800 008 7054, I am here Monday-Friday 10am-5pm. Do get in touch if there's anything you want to talk through.

Best wishes

Anna

Support Service Manager

[Hidden]

Thank you anna... I will keep you posted on what happens in the coming weeks.. it's so hard as everything takes so long.. it's been such a hard time x