I was diagnosed over 12 months ago with Spinal Chordoma T6.7.8 plus spread into chest cavity.I had major surgery X 2 last summer. Radiotherapy this spring 34 sessions. Have just had results of follow up MRI which shows what remained of tumour ( couldn't be removed due to proximity to major blood vessels) hasn't increased in size but there are also a couple of new areas showing up. My Oncologist is suggesting wait and se until another scan in three months, what I am not sure of is whether I should ask for second opinion at this stage. I am under Aberdeen Royal Infirmary and Scottish Sarcoma Network for MDT. Would add that I don't have any complaint about my treatment it is more a case of whether I should have someone with more experience of Chordoma give my scans the once over, also should I ask for a face to face meeting rather than Telephone which is what todays was?
Hi CeeF and welcome to the Online Community although I am sorry to see you joining us and to hear about your diagnoses and the challenges you are facing.
A cancer diagnosis can be such a stressful time but when it comes to support there is nothing better than talking with others who are on the exact same cancer and treatment journey.
The Community has various support groups (discussion rooms) so can I suggest that you consider joining our supportive Bone cancer and Spinal cord tumours groups. These are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) link(s) I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
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.
Give me a shout if you need further help.
Best regards.
