Malignant rhabdoid tumour of the kidney

Hi and welcome to the online community

I'm very sorry to read that your son has been diagnosed with a tumour in his kidney. It must be an extremely stressful time for you.

Could I suggest that you also join and post in the kidney cancer group as you'll then be able to ask questions, share experiences and get support from others with this type of cancer.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if you could pop something about your son's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.

x

Hi Kiansmum,

We have sadly found ourselves in the same situation as yourself at the start of April. Our daughter has just turned 8 months and at 6 months was diagnosed with stage 4 malignant rhabdoid tumour of the kidney, but has also spread to her lower abdomen and a small tumour in her brain. 

She is also receiving chemo every two weeks and this week she will do her 4 session. We are devastated beyond words but are trying to stay as strong as we can for her. We are longing for the days when we will be able to see our families again as this has happened during lockdown, maybe like yourself?

Have you spoken to anyone else going through this currently or in the past?

take care. x

Hi mna_mum,we are currently going through the 4th cycle too.it is so horrible and everything is made even harder because of this virus,Kian had an mri and ct scan on Thursday to see how it’s reacting to chemo,so fingers crossed.we are still waiting on the results.i am on a rhabdoid tumour support group on Facebook and there are some people from all over the world going through or have went through the same thing.other than that I haven’t really heard of this horrible illness.

xx

Has anyone had any good news stories or updates on these feeds as we are experiencing this and looking to find others. Thanks

Hi Stepheniee109b9 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.