Fumarate hydratase deficient RCC

Hi - I've never heard of fumarate hydratase deficiency before and the articles I found are complex, along the lines of having to look up a word to translate/understand each sentence.  Even then I'm struggling to understand.  But I stumbled across this on the kidney cancer uk site.  The subsequent link is more detailed.  If the mods delete the link, pls direct message me and I'll share it personally. 

www.kcuk.org.uk/.../ 

Hi Mmum,

Thanks for help finding infos. Unfortunately I can’t see the link, but I browsed through KCUK website and found an article.

I am still want to find someone to share helpful experiences. My surgeon couldn’t tell me nothing. He just mentioned I will be scanned regularly.

Have a nice day!

I've done something wrong - Link is truncated, it doesn't work for me either!  It was this and this.

It saddens me when I hear stories of people who find their onco not forthcoming with info.   

Hi Grogu67, 

I also have a rare type of cancer, but the lovely people on here pointed me in the right direction and I managed to source two cases from six years ago, and I have been able to contact and read about their cancer journeys. I hope you can also find someone to support your journey, I wish you good health.

Hi my husband has HLRCC - Hereditary Leiomyomatosis and Renal Cell Cancer - which is due to to the. FH gene variant. My sons have been tested for it and are awaiting results. It is quite rare. Unfortunately my husband is of the 2% that have developed the renal cell cancer. My husband’s oncologist said he was his first case of it that he was dealing with. It runs on his mother’s side of the family.

Hi SuzyB,

I am happy to know I am not the only one with this.

In the past (1990) I had my uterus removed because of Leiomyosarcoma, later I struggled with some myelodysplasia, and now this renal cancer. All related with this FH gene problem. And sadly my mom also had Leiomyosarcoma on her late twenties. So definetely it is herediter.

Does your husband have any treatment, or diet or anything that can help? i have a massive fear from metastasis or any kind of new tumors.

I wasn’t referred to oncologist. Do I need one? My urologist mentioned a genetic check up, but in my case it is not relevant because I haven’t have child.

Have a nice day!

Hi are you on Facebook as there is a HLRCC community page on there you could join with lots of information and support. Those who have the FH gene variant should receive annual MRIs to monitor their kidneys. Hope this helps x