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Hi Folks

My husband has stage 4 renal cancer, 13 cm tumour removed by open radical neph 12 days ago. His recovery has been really tough so far. Out of hospital within 2 days, pain been bad and difficult to control. Appetite almost nil with half a stone down in first week. Is this all normal, I know it is early days but feeling a bit out of my depth here?

thanks

  • 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 not a member of this group, so can't help with your questions, 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.

    While you're waiting for replies, it would be great if you could pop something about your husband's diagnosis and treatment to date 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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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thank you much appreciated. 

  • Just to say, stage 4 is (usually) when the cancer has spread to another organ outside the kidney.  Brain, lungs and bones are the common sites for spread with kidney cancer.  The approach is (again, usually) immunotherapy, not kidney removal.  This might explain the lack of replies of people experiencing similar.  Anecdotally though, people with nephrectomies post here about it being a major operation.    12 days is very soon after the op.  Is the pain getting any better now?  

  • Hi, he has a positive lymph node between his heart and lungs, hence stage four. Treatment going forward is either another surgery to try and remove this, (although we have been told it is in a very awkward place.) or immunotherapy. Last two days after meds were upped the pain has been better controlled. Thank you for your reply, appreciated x

  • Hi Nem. Sorry not to have answered you earlier. My radical nephrectomy was by keyhole surgery even though the tumour was as large as your husbands so I can’t specifically answer your question regarding recovery time but even with keyhole surgery the first couple of weeks were pretty grim. I did spend a little longer in hospital though. 12 days is very early yet given it has been major surgery so I don’t think your husband is experiencing anything unusual. If you are worried I suggest you contact your husbands clinical specialist nurse. He should have been assigned one when you first met your consultant. They are usually attached to one or two consultants.

    Now that you’ve found our group I hope you keep in touch to update us with your husbands progress or just to have a supportive chat.

    Hope this helps a little 

    Rojan  

  • Hi Rojan, thank you so much for your reply. He is slightly better this week; but pain still continues to be quite bad. Support from the hospital has been really sparce, we weren’t assigned a nurse specialist? We are in Scotland, not sure if this is the practice up here. It is good to hear from someone with same size of tumour, we were so shocked at the extent of it as there were no symptoms. Obviously we are worried about OS as it is stage 4 and been told, treatable but incurable, internet stats are really frighteningx

    • Hi Nem. 
      I’m guessing that your husband’s care will be transferred to oncology as he is stage 4 and likely to need further ongoing treatment. You will i hope be assigned a nurse then. 
      Please try not to be scared. I’ve been stage 4 for over 10 years. Yes it’s no walk in the park but neither is unbearable and unliveable. 
      Click on my profile to a get a better idea of my cancer journey. 
      You’ll see that I didn’t have symptoms prior to diagnosis. It came as a shock and I think you are still coping with that initial shock. 
      Keep positive 

    Rojan

  • Hi Rojan

    I have read your profile, my goodness you have had a lot to deal with!  Your story has given me a boost and a lot of hope, thank you. I am glad I have joined the group, I don’t feel so alone with this now. He goes  to hospital in a month, for another scan and then plan for going forward. X

  • Good luck and keep us posted. 

  • Hi Nem

    I am 1,week post op partial, laparoscopic nephrectomy I got out day 1!

    You don't say if your husband had laparoscopic surgery but if so the pain from the gas they use to view everything is horrible. That's now settled for me and I have my pain under control by trial and error. Peppermint tea really helped though can't say I was a fan of the taste. 

    I have no real appetite at all and only eat toast or something like that just now. 

    Hooe thus is helpful and your husband feels better soon

    Fee