Hlrcc

Dee28 5 days ago

2 replies
14 subscribers
97 views

Hi everyone my wife was diagnosed with a rare genetic type of cancer hlrcc wich is incurable

My youngest daughter has the gene and is being monitored it is 2 years since diagnosis

Although she is responding well to treatment her personality has changed nothing I do or say is right

At some point treatment will stop iam just wondering if anyone here knows of anyone else with hlrcc it would be good to here from someone else about how they are dealing with it and side effects of immunotherapy

Millibob 5 days ago

Hello Dee28

A warm welcome to the Macmillan Online Community, although I am so sorry to find you here. I am Brian one of the community Champions here at Macmillan.

I am so sorry to read of your wife's diagnosis - I must confess Hlrcc is a new cancer to me - I have put the details into the Community search facility and it comes up with one other entry and here's a link to that thread:

Grogu67

RE: Fumarate hydratase deficient RCC

I do hope this helps and if I can do anything else for you please do get back to me.

Best wishes - Brian.

Community Champion badge

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Strength, Courage, Faith, Hope, Defiance, VICTORY.

I am a Macmillan volunteer.

Dee28 5 days ago in reply to Millibob

Thank you for response I am not surprised you have not herd of it apparently it is very rare but I am not so sure the link between lumps on skin and the cancer is hereditary and develops into kidney cancer that's what people are diagnosed with the problem is it is far more aggressive than just kidney cancer if you could just doa quick google of condition I would be greatful