Blogs - Page 64

I saw an orthopaedic doctor following a MRI scan. He thought it was a chondrosarcoma originating in the left ilium pelvic wing and set up core biopsy and PET scans to find out what it was.His treatment plan was to cut it out, taking out the left ilium crest along with the tumor. I asked about how disabled I would be after the surgery and said I would be almost not disabled at all and could walk and mumbling quickly about "with calipers". And when I asked for more info he got angry and said it would kill me otherwise.

I am still waiting to be accepted into the Lutate program at RBWH. The program Director has been on sick leave for 7 weeks. I may do the Study trial of LX 1606 (telotristat etiprate)which suppresses the symtoms of Carcinoid Syndrome. I still have 3 weekly injections of Lanreotide. First week I am almost symptom free, then 2nd week just average, then 3rd week symptoms return (flushing and severe itching caused by Histamine emissions from the neuro-endocrine tumors in the liver) However I thank God I am still alive and fairly well after 2 and a half years.

2011 primary kidney cancer. Received a vascular injury during the operation and have been left with permanent disabilities that prevent me from working.Vascular repair expected to fail 3-5 years requiring a reconstruction 2012 primary gallbladder cancer. Benign May 2014 secondary kidney cancer in lung. May 2014 vascular repair failing as predicted. I don't know anything about lung cancer and or treatment. It is very early stages,two lobes less than 12mm tumours. Can someone please share their experience with treatment and or recovery

So further to everything I have had the radioactive iodine treatment which is recommended for thyroid cancers even though mine is a rare cancer. All went well and according to the scans the cancer had not spread anywhere else at this stage which is great. I am currently looking for another Dr to look after me as I have moved interstate throughout this process. This is quite a stressful situation as I now have to find someone else to trust with my care. But always optimistic...I know things will work out. Happy to chat.

I had my second operation about a month ago and since then have been really happy with how things are going. I have been able to do most things like cooking, cleaning, walking, shopping, going out with friends and things like that. I have treated this time a bit like a holiday and have enjoyed it.

I am in completely uncharted waters (for me), having enjoyed good health all of my life (so far). Now everything seems qualified by ifs and maybes. If this whatever shows such and such a result, maybe I will have to go this way or that way. Don't get me wrong - I will appreciate feeling well for as long as I can but I almost feel like a sham... all these doctor's appointments and I don't feel any different ! Then there's that operation looming that is going to take me out of work for a month. Hopefully that will be the last of it for a while, apart from recovery from the surgery.