Hi I am new to group but needing support

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Hi I had surgery at the end of June partial nephrectomy, Papillary renal cell carcinoma grade 3 and second area found during surgery also removed differential between Papillary renal cell a demo a versus low grade papillary RCC.

I have been told I am at high risk and in their words will need aggressive follow up by having scans 3 monthly,

I also have history of breast cancer, skin cancer and bowel cancer this has left me with bowel problems.

I am not clear on the renal cancer and not sure where this leaves me, I am struggling emotional at the minute but this might because I am not sleeping well or it may be the fatigue from surgery. Tummy still sore to touch. I was shocked that it was grade 3 and have fears that this will return.

can anyone offer any advise.

  • I'm so sorry you are dealing with this. I dont have any practical advice, but I'm sure that someone will be able to answer some of your questions. I just wanted to give you a virtual hug and say your not alone. I've found this group great reassurance. Take care, Kerry. 

  • Hello Peter Rabbit. 
    Welcome to our club even though I’m sure you would not have chosen to join. 
    Please don’t take this the wrong way but it’s nice to talk to another Papillary Renal Cell Carcinoma sufferer . We are a rare breed in this group. 
    First of all I take my hat off to you to have come through so much already. Sounds like you’re a tough cookie. 
    Everyone’s cancer experience is different and as time rolls on treatments develop and improve so my journey may be different to yours. Having said that if I tell you I started my journey over 15 years ago with a total nephrectomy I hope it gives you some encouragement. 
    I’m guessing, although you haven’t actually said, that your medical and surgical contact so far has been with Urology as from what you have said the cancer was confined to the Kidney. If this is the case the 3 monthly scans are on a watchful wait basis to make sure there has been no spread. 
    Long may that be the case but if at some point secondaries do appear there are plenty of treatments out there and these will be discussed with you in oncology when the time is right. 
    If I’ve made some wrong conclusions please put me right. In the meantime it might help to read my profile. Just click on my name. And of course please keep in touch and WELL 

    Rogjan

  • Hi thank you so much for your reply, you are right, wish I did not have to join the club Lol I am under Urology at the moment, I guess my problem is that no one has really explained what this may mean to me. And you go from thank goodness it is all over to now I am just waiting for the next scan and results, like you i am just waiting for Retirement now and would love to think I have time with my grandchildren I will get back to being positive but feel I have taken a bit of a dip in emotional state at the moment. Which I guess is normal.

    wishing you well 

  • Thanks for the virtual hug we all need those. 

  • Absolutely normal to feel down this soon. I’m sure once you’ve fully recovered from the surgery you will start to feel more positive. Yes the wait between scans can be depressing if you let it. I tried to plan something special after each clear scan like a holiday or a project at home. That way I concentrated my time and mind on anything other than when is the next one due. I’m sure your grandchildren will find plenty to occupy your time.