September 2022
I Also found contacting the rare cancer website of Australia quite helpful with people you can speak to for further referral. I asked one of my doctors do I have cancer and they looked at me and Said "well" so yes make sure you do your own research and be informed. Also make sure you keep asking for regular scans. My oncologist didn't want to so I went elsewhere and pushed for scans to put my mind at ease. Unfortunately, I have a rare for of cancer as well and have been told reoccurrence in 2 years, especially as it has already spread.
... View more
September 2022
HI, I was diagnosed with metastatic U terine Leoimysarcoma and have been told that my cancer is incurable as well. I have had 3 tumours removed surgically from my lungs and abdomen and have been placed on what I can tell similar medication to remove all oestrogen from your body by stopping its production. I am on letrozole which is a form of aromotise inhibitors I think they call them. Yes the symptoms you are experiencing are some of the common one. I have gotten these symptoms and much more. I have really noticed the changes in my body without the oestrogen and other symptoms are starting to occur. Stay on top of this and through my reading, you can ask about the brand given to you or other types which may not cause these symptoms in such severity. I hope all gos sell for you....
... View more
January 2022
1 Kudo
I was initially told I had one thing, then the other and finally after retesting a larger part of my tumour they confirmed I had metastatic leiomyosarcoma which is a rare form of soft tissue tumour. After a lobectomy to remove one tumour I asked the surgeon more information. He was a loss on this type of cancer. I have since researched online more information which has helped, but has also heightened my anxiety without being able to consult a doctor. So I am at home recovering from this surgery waiting to head my surgeon to remove another two tumours one on my left lung and one on my ovary. I was also told that the fibroid removed 7 yes ago when I had a hysterectomy was the same cancer. I wondering if anyone else has had this type of cancer and how they coped waiting…
... View more
December 2021
Thank you! I needed to read this today!
... View more
November 2021
2 Kudos
I have just been diagnosed with stage 4 ovarian cancer that has spread to both lungs. It’s been Less them a week since I Went to the doctor feeling unwell to being told I have terminal cancer. I have had to be flown interstate due to border restriction I am in isolation for 14 days with no family support. I have to yet have biopsy to test type of cancer and to see what treatment is available. It’s so scary and lonely playing the waiting game with not being able to leave my hospital bedroom or get a hug from family. I’m so scared. I have feeling of why me I’m mot that old.
... View more