Hi all,
I was diagnosed may 2024 with the above. I've had a partial nephrectomy last June for the the tumour. I also had a pneumothorax in 2015 which resulted in a Talc pleurodesis. Putting these two together i was sent for gene testing and was found to have a rare gene mutation called birt hogg dube syndrome. My first scan since nephrectomy was in December it looked clear but urologist explained that its slow growing and told me because of the bhd we will see it again and will scan again in 12 months. My scan of my lungs showed multiple cysts. I am in my early 40's and very grateful that I'm still here and have some extra time with my children and husband but fear deep down of the future scans and the unpredictable cysts in my lungs.
Birt hogg dube syndrome is a gene suppressing but mine is a mutation and speeds up cell growth of tumours mainly affecting kidneys and lungs. Because its rare doctors don't know too much.
Feels good to vent.
Hi Bethell5eaed4 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to you I know how good it feels to let off steam occasionally.
The online community is divided into different support groups so I'm going to recommend that you join the kidney cancer group as you'll then stand more chance of connecting with someone who has the same type of cancer as you.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
