New Sarcoma diagnosis

Hi there, welcome to the forum. I haven't posted in a while as I have just done 6mths of chemo myself. I was diagnosed with sarcoma 2 years ago and have had RT, surgery and finally chemo. I was at my wits end before finding this group. So many people on here have far exceeded the "sell by date" their words not mine. Without some of the people on here I don't know where I would be now. There are so many treatments out there, so please don't lose sight of this. I am sure people will pop in and give you some good advice and we are all here for you, whether you want to share tears, laughter or just want a good old rant, everyone is lovely and ready with a friendly ear xx

Thank you so much for your reassuring and supportive words, coming from someone who has been through this really helps. X

Hi Purescott, I am sorry to read about your situation and fully understand your disappointment and frustration. There is in my experience no instant recipe to help you cope but over time you will gradually accept it and live within the limits you have. There is even now absolutely nothing wrong in having plans and making new ones and just fitting them around your treatment schedule. I do hope you come to terms with this new normal very quickly and I wish you all the best.

I wouldn't know how I would have coped without the friends I've made on here. Sometimes it is easier to talk to strangers than family but they don't become strangers for long.  Always here to listen xx

Thank you Patrick xx

Thank you, and you are so right. Xx

Hi Purescott 

welcome to the group, but I am so sorry you have had this news. I also have sarcoma in the lungs. Mine is a rare sarcoma called endometrial stromal sarcoma, which was discovered after I had a hysterectomy in 2009. It came back in 2014. It’s been a tough few years, but after originally being told I had 6 months to live, I have adjusted to my new way of life. You can read my journey by clicking on my profile picture which will take you to my profile page. 

Being told you are incurable is so very scary. But you still have treatment options so that is the best thing to concentrate on at the moment. One bit of practical advice that has helped others is to get your affairs in order, do your will, plan your funeral. Not because it is imminent but then it is done and you don’t have to think of it again! I think everyone should do this, sick or healthy. Nothing worse than someone dying and you don’t know what their wishes were. Get it done like a piece of admin that needs doing, then forget about it. Concentrate on your treatment and your family. That is where your energy should be, that is where you will find the strength to get through this. Big hugs. 

Thank you Maya, I am so sorry you have had to go through that. My will is done and my funeral is planned, by nature I am pretty organised.

With each passing day my panic attacks are easing and I know my head will be straighter after my treatment discussion, its the not knowing and the word palliative care that is terrifying.

Thank you again. X

The unknown is a terrifying thing, I much rather people tell me in black and white what it is, then I can deal with it. Good luck with the treatment. X 

Hi Purescott 

As Patrick said it will take time to accept the new diagnosis and you will come around and live your life well with cancer treatments.

I would also add that patient can respond well to chemo and that may open up options later on. I had spread to lung also but able to have the 4 ablated. I am not cured but currently not on chemo and in remission. I would personally insist on being seeing by thoracic surgeons / lung specialist to discuss local measures once you had a few cycles of chemo. Oncologist is more likely to offer chemo only options.