I am international nursing student(final year). I was diagnosed with with kidney cancer on September 2019 at age of 26yrs old.
And I underwent for Robotic assisted partial kidney removal. Later biopsy and Genetic test confirmed that my cancer is rare genetics cancer which is Hereditary leiomyomatosis and renal cell carcinoma (HLRCC).
On February 2020, during follow up Ct scan and pet scan revealed that cancer was not only reappeared on same kidney but also spread on other areas to. I underwent for another major open surgery for kidney removal and 16 cancer node removal, which take 2 months to recover.
last week, I had to go for 3rd surgery because during follow up pet scan 6 cancer node has been confirmed. My surgeon removed 2node only and planned to go for trial medicine. As being Rarest cancer patient there is not enough information is available .
My health condition has reversed and totally stopped my life. I am not being able to work since 6 months and continue my study.
Each time I have to pay for my CT and pet scan. During every surgery, it cost me out of pocket.
As not being permanent resident, I am not entitled for any support schemes.
I am having heaps of issues but i still have hope and I am trying to fight my battle. Anyone have similar cancer? Can we share our story to build confidence of each other.
I am so happy to hear from you! Maybe I recommend some options, just in case? have You tried exploring your options with the cancer council ph: 13 11 20 or with centre link?? For financial proposes or recommendations yet?
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