Due some luck

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Hi all so I contemplated joining for a while and bit the bullet . So I’m 37 and from the start unfortunately my diagnosis has just got worse and worse . Although I have finally started immunotherapy last week . So I’ve gone from ultrasound picking up kidney mass to looking at my Ct to noticing it had spread . A failed biopsy and finally a good biopsy that gave me a diagnosis of collecting duct kidney cancer . One of the rarest forms there is with little to no information. And any there is does not make for good reading. I still hope the biopsy is wrong or that the immunotherapy and possible chemotherapy will work . I had a phone call from a normal doctor today who’s going to give me the dreaded sr1 form to get pip . It’s something I feel I’ve been hiding from as me and my wife didn’t want that as it makes it feel more real that there’s a chance I’ll die . I forgot to add that my wife is also pregnant with our first baby . It’s a mental year to say the least 

  • Hi I am glad, you have  posted, sorry to hear you type of cancer is rare.

    You have took the plunge, and you will realise, you are not alone on this journey.

    You are very young, and my heart goes out to you.

    You have a lot to fight for and live for, hopefully the treatment does work.

    As for the form sr1, expect it, with the knowledge, that is  only a guide line, of what people may accomplish.

    I was diagnosed 8 years ago stage 4 incurable from day one.

    Done chemo, radiotherapy, and immunotherapy, still have 3 monthly scans.

    A positive attuited is a real good thing, though not possible all the time, i have my down moments, would not be human if we did not.

    Then as we say Big Girl/Boys Pants on and pull them  up.

    Others  will come along, please use this group, always some one here, to chat to.

    We Rant, Cry, Laugh ,Moan all do it.

  • Yes I’ve read many of the chats and spoke to other members in different groups . Yes I’m trying to stay focused it’s the hardest bit . I’m still walking/bike riding to stay active and try help beat this horrible disease . I do still live in hope :) we have booked a weekend away this week so hopefully it’s a welcome distraction. It’s good to know your fighting still after all these years 

  • Hi HOPE is a very powerful word, and i do use it quiet a bit.

    A weekend away, will do both of you a bit of me time, to relax, and get away from the roller coaster, we are all on, and thats what it is, ups and downs, goes faster and faster, slows down, and takes of again.

    You are young active, and have the strength, we always find it from some where and a lot to live for.

    I never thought i would be here, i should not have been, treatment and being stubborn and Hope has kept me going.

    You have a  lovely weekend away.

  • Hi Kyle

    Welcome to this group....no-one wants to join it, but the people here are really supportive and helpful, and understand what you're going through. 

    Hope your treatment went OK, with no side effects. Will you be going every 3 weeks? or 2? 

    Immunotherapy is getting really good results with treating kidney cancer, it has been a game-changer for a lot of people.

    Have a good weekend away. You can relax a bit now the treatment has started, and you can get into a routine.

    Stay strong!


  • We already speak haha 

  • Ah ok . Yes I still live in hope . I have found a few stories of hope and that’s what I am aiming for :) thanks again you have been a great support all the way through 

  • Hi Kyle, welcome and well done in joining, I know it was a tough decision but hopefully a rewarding one as most on here have found. Sorry I have no experience of your cancer to share, but it's good to hear your treatment has started and I hope immunotherapy works well for you, there are a few on here on it too who can share their experiences with you, have a wonderful weekend with your wife and many congratulations regarding becoming a day for the first time, it's an amazing experience. As for  PIP my macmillan nurse got me mine, I wasn't really bothered but I'm glad I did. Worry free driving is a big help. It's good to see your trying to live life a positive attitude through difficult at times is the best way to be. best wishes 


  • Hi Kyle and a warm welcome! I think most people think about joining this group for a while before they actually do and lurk in the background for a bit! I certainly did!

    If you are looking for positive stories, you will find a lot here. Like Ellie, I went straight to Stage4 (with spread to lymph nodes etc) My oncologist got me on a trial target drug, my treatment stopped in Oct 2016, after being on it for just over 3 years. I still get checks and scans. Where there's life there's Hope. So hang on in there, be positive and I hope and pray you will be around to see your baby grow!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • In the ever chamgimg diagnosis of Kyle . It has today changed again . It’s now classed as Succinate dehydrogenase deficant renal cell cancer . It is linked to the cancer my mum had so my sisters say so I guess it was hereditary. Whether it’s better or worse yet I do not know . I will now be under the care of guys apparently