Hi..I'm new here, although I had my sarcoma in 2007, I am still worried by it.
I had fibromyxoid sarcoma in my left hip area, removed by surgery and fortunately I did not need chemo.
Had regular mri scans and chest xrays until this year. The oncology unit has said i am discharged, I asked not to be as I felt scan and xrays every year or 2 would keep my mind at rest that it had not returned but they have said they need to discharge me.
Anyone else here have a similar story?
I am secretly very worried that it may return and I am not being monitored.
Juju3
Hi Juju3 and welcome to the Online Community but sorry to see you finding us.
A cancer diagnosis can be very challenging and even when you are told to go and live your life this brings different challenges….. “the what if’s?”……. your security blanket being removed.
I have an incurable blood cancer, diagnosed way back in 1999, it’s a very long story (hit my community name if you want see my story) but after 16 years of treatment I was eventually told I was in full metabolic remission for the first time in over 17 years and on 18 June 2018 I was discharged by my team “Time for you to live your life Mike, a life that does not revolve around coming to see us every few months”
I took this and ran putting my incurable condition on a high shelf. I know what to look out for and I have direct contact with my Specialist Cancer Nurse but have not needed to talk cancer, more help out with a Macmillan Project that we have been working on…… not everyone can put their cancer on the shelf like me.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.
It may help talking with others who are walking the same type of post cancer journey will help you navigate this difficult time.
The New to Community is like the Community Reception area and as there are many cancer types so likewise the Community has many cancer specific support groups so can I recommend you join our supportive Soft tissue sarcomas and our general Life after cancer groups as this will be a good place to connect with folks on the same cancer pathway.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, support or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
I help out around our Life after cancer group so if you want to talk more this would be a good place.
All the very best ((hugs))
