Stage 3b papillary renal cell carcinoma - type 2

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Hi everyone, as many of you I’m feeling really lost. So I want to start by saying if you’re reading this - I’m sorry if you’re also struggling :( and thank you for taking the time to read and help. 

My husband ended up in the ER 2 weeks ago and we found out he had a 9cm mass in his left kidney. It had also travelled into the interior vena cava so he had to get the kidney removed as well as have the vein operated on to remove the tumor. The surgeons feel confident they got it all - at least what they saw, and the few swollen lymph nodes around it came out clear. I’m struggling to understand the severity of his diagnosis and how likely it is for the cancer to return. All these terms are new to me and I’m currently feeling scared because the oncologist said that it’s a waiting game now and we should just hope nothing shows up in the checkup scans - the next one being January. He said for papillary rcc, there are no immunotherapies that are proven to be effective so there’s nothing to do other than wait. Can anyone explain to me (please be honest I prefer the truth) how likely it is for the cancer to spread to an other, more serious area given it went into the vascular system? My husband is young - 38 years old. He’s an ultra runner and cyclist - and is so healthy. We have an 18month old daughter and I don’t know how to explain to her (or if I should) that daddy’s health is ok for now but could not be in the future. The thought of it is terrifying and to be honest I don’t think I have quite accepted the situation. I keep waking up thinking / wishing this was all a nightmare. 

Also - does anyone have any resources they found useful (books for example) to help cope and help support partners through this journey?

Lastly, this is very controversial, I’m sure, but I’m open to trying non medical techniques too such as changing our diet  - whilst im primarily a science/ medicine / research believer, I also feel like if there are things to do that won’t interfere with the medicine, then I’d rather try than not. If anyone has reading recommendations in this space too, then please do share. 

  • Hi  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 sorry to read about your husband's recent diagnosis and it's natural to want to do all you can to help and understand.

    I'm not a member of this group, so can't help with your questions about how likely this type of cancer is to recur, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot by the group members.

    While you're waiting for replies, it would be great if you could put something about your husband's 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.

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