Update

The MDT met today and the hospital Radiologist reviewed my Pet scan. It seems my hip is in trouble again. So scans and reports being sent to Beacon to see if area in question was already treated by them. If not they will be asked to reconsider more treatment. This time it has jumped a little nearer the bone, I do wonder does Stereotactic treatment causes this but then again my pain never went away. I am to see my Oncologist on Monday to get a fuller version in person. I would greatly appreciate if anyone can think of questions I should be asking. I am very much placid the best of times but I feel I do need to ask questions. Why wasn't this picked up in Sept CT SCAN. Why wasn't I listened to about pain problem would come into my mind. The MDT did review MRI and recommended petscan which I had last Thursday. Should I be getting a second opinion is another thing that comes to mind but I do have the pain.

[coksd]

Hi Sorry to hear your hip is still giving you trouble as the pain has persisted. Can you bring someone along to the hospital with you and write down any questions before going in. Are you going to the Beacon or to your local hospital for the consultation do the two hospitals Liaise well together. I am not sure what exactly to ask them but I went to St Vincents for a Second Opinion and the care is amazing and the communication with consultant and results and continuity of care. I was offered three good options at this hospital that were not available at my local hospital I got a chance of another platinum based chemotherapy and now I am on Olaparib after responding. I also got tested for immunotherapy which is an option to pay for if I need it.

I did go to the Hermitage and had the cyberknife opinion and I was deemed suitable but I didn't get at the time because I was on avastin but I remember my old hospital didn't Liaise well with Dublin over it and there was poor communication back to me from my oncology team about it although they did forward scans and records its hard for patients when they are not medically qualified to make these decisions.

I know I have the option again if I need it in the future, I don't feel there is great knowledge on these high-tech procedures outside of the big hospitals with consultants that haven't worked with them. I know travelling to Dublin is hard when you don't feel well but explore all options. xx

[Hidden in reply to coksd]

Thank you for your kind reply, I feel that my MDT do have my interests at heart and I understand that my hospital does have access to information through colleagues that other hospitals may not have. I suppose I am fearful that this wont work out again into the bargain if they do decide to accept me. Its my own Oncologist I see Monday as only spoke to liason nurse over the phone. He will forward my latest scans to Dublin. I know I was told on leaving Dublin in the summer, they would see me if my team requested it. So If this is the case I hope I wont have a long wait. I will ask about the gamma ray option if it is an option. Then I will have VHI to deal with, On my table of benefits it says, Radiotherapy fully covered but it seems from the hassle I had before, there is no code for Stereotactic treatment. It may have changed meantime so I don't have two battles. Thank you again for you insight

[HogwartsDK]

Hey Joan,

Sorry to hear you are in pain and I hope the medical professionals can figure something to sort it out for you.

Take Care

Dx

[Hidden in reply to HogwartsDK]

Ah they will figure it out but the sooner the better at this stage. I do think I will have to be more direct with them, and want the waiting time as short as possible.

Only good thing is that hotels will be fairly empty so it will be easier to get accommodation this time of year if needs be.

[Naimish]

Hips Don't Lie Joan..... wishing and praying for your speedy recovery from pain. All will be well.

Brgds

Naimish