I was diagnosed with pT1b TFE 3 rearranged renel cell carcinoma. My doctor didn't know much about this cancer, nor his colleagues. I've been put on surveillance for high risk, having scans every 6 months for 10 years and then annually for life. Anymore information about this type of cancer would be really appreciated.
Dear Chiz39eff1
Thank you for getting in touch and welcome to the online community, I hope you find it a helpful and supportive way to communicate with others. My name is Isobel one of the Cancer Information Nurse Specialist, on the Macmillan Support Line.
I am sorry to read of your diagnosis, I can appreciate it must be challenging to have been told that you have a cancer, and then to be told by your doctor that not much is known about the type of cancer you have.
I was not able to find much information about this cancer other than the need for more research. TFE3-rearranged renal cell carcinoma is a rare malignancy with distinctive morphological and immunological characteristics. Although it can manifest in individuals of any age, its occurrence in adults is exceedingly uncommon, comprising only 1.5% - 4% of adult renal cell carcinomas.
From the limited literature that is available, what is clear is that is has been difficult to research and collect evidence about TFE3 rearranged renal cell carcinoma. The consensus in the literature is that more research is needed to fully understand what this means for people affected by this. This could be why your doctors and their colleagues were not able to provide much information.
Kidney Cancer UK are a specialist support organisation, you may find their information helpful. They have a medical advisory team who may be able to find out more for you about this rare cancer.
It is good to read that they have a plan in place to monitor your condition, this will mean that if there are any changes to your cancer, they are able to act on what is seen at that time.
Please know that you can contact our helpline and speak to one of our cancer information nurses if you need to discuss this in more detail. Sometimes a 2-way conversation can be very beneficial.
Best wishes,
Isobel Y, Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
Ref/ IY/AP
