Does size matter ? Been told “massive”

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I got told my tumour is “massive” which scares the hell out of me. I didn’t even know. It’s 9cm .. is that massive compared to others? I don’t actually know what I’m dealing with at all which is the worst part isn’t it ? I’m on cancer pathway now. 2 week wait !! Help 

  • Hello Weeze

    waiting is the hardest part in all this. I know you are worried, and have only just started on this path. I know others have advised 'not to worry', but it does get easier once you have met with your team and you are given more information. remember that most kidney cancers are slow-growing, and can be treated.

    My tumour was 10cms when it was found. After the first round of immunotherapy, it had shrunk by more than 50%. It is now stable, and I am still on the immunotherapy a year later. In my case, I could not have surgery to remove the tumour, so immunotherapy was the best course of treatment. I don't think it's the size of the tumour that's important. If you have been given a support nurse, try phoning to discuss your worries, or use the Macmillan helpline, and talk with someone who can reassure you. 

  • Hi, thanks for the response. I’m keen to find out why they’ve done immunotherapy for you instead of operation ? Most people say I’ll prob need nephrectomy but I’m not sure yet so intrigued in your story please 

  • Hello again Weeze.

    I know that you’ve read my profile so you know my tumour was 14cm. I’m not playing the “mine was bigger than yours “ game. But you asked the question of size mattering and frankly I’ve no idea. You also know that I had a radical nephrectomy. 
    What I do know is that size may matter when it comes to the type of surgery if nephrectomy required. 
    I Also know that things have moved on since my diagnosis. Immunotherapy was unknown at the time so it may be an option instead of surgery now where that wasn’t a possibility for me. 
    All will become clear to you my friend once you get to meet your urologist and you can ask the right person  for the answers to the questions that are haunting you now. 
    Try not to pre-empt that appointment. As others and I have said, the waiting game is the worst. 
    You need a plan and that’s so understandable Holding your hand while you wait. 
    Rojan

  • Hi Weeze

    I'm not sure if my story will help you or not! There are many factors in the decision made by your team as to what to do about your tumour. It can depend on the type of cancer, whether other tumours are present (secondaries or metastates (mets), any difficulties that surgery may bring eg age, other health conditions already present etc etc. At one time, cancer was tackled by doing surgery first, then using chemotherapy and/or radiotherapy afterwards. Now, immunotherapy is often used first, to shrink the tumour and make it 'dormant' before doing surgery, as it can be safer that way. There is loads of info on here, and Macmillan nurses can explain it far better than I can! If your tumour is confined to the kidney only, then I guess you will have it removed, and there are plenty of people on here who can advise you about that. Remember, everyone has different stories to tell, and you cannot know whose are going to 'match' with yours yet, 

    My own case is quite complicated, and surgery wasn't possible because it had already spread away from the kidney. I am still feeling really well after a year of treatment, and I have had very few side effects, so it isn't worrying me. I can continue on this treatment indefinitely, according to my oncologist when I saw him a couple of weeks ago.

    Please try not to worry and overthink things whilst you wait. I know it's hard not to, but you'll just make yourself more stressed! It really is the hardest part of the process, just waiting. Be kind to yourself, try to rest, but also try to do the things you like doing, and that can distract you. I took my dog for lots of long walks whilst I was waiting, I hope everything goes well, and that you post and let everyone know how you get on. This forum has some brilliant, supportive people who are with you 100%. Hang in there!

    Candysmum 

  • Thanks again to everyone who commented. I know all journeys are going to be different and not necessarily lead to the same place either but I’m trying to understand a few things so I can arm myself with a few questions for the urologist as I have no idea about this and what to ask. It’s a little less understood than breast cancer to me. Although I guess I knew nothing about that either at the beginning but got all the info on the way. I’ll keep everyone posted and hope I can stay out of the end of life groups as I’m increasingly anxious about that being the case. 

  • Mine was very large - i had my left kidney removed just over two months ago. I was told I might need immunotherapy if the cancer had spread but it was contained and so I’ll just need CT scans to monitor things. I found that the time between being told about it and the operation was the worst. I’d not really had any symptoms before but once I knew it was there every twinge set me on edge. People say try not to think about it but I found that very difficult. I was fortunate that my op was brought forward by three weeks so it spared me that time worrying about it. Good luck with your treatment. 

  • Hi, thanks for replying. Still early days 8 weeks isn’t long for you.. how are you feeling ?? I bet you were pleased to hear it was only within the kidney . It’s terrifying isn’t it just waiting. I’ve got my first appointment with renal specialist Thursday since being told I was being referred. I really really hope it’s benign or if cancer only in kidney. 

  • That's great news about having your first appointment on Thursday! Not long to wait now. I would suggest, if you can, to take someone with you as an extra 'listening ear', and also to write things down. You probably won't remember everything that was said to you afterwards! also take with you a list of questions that you want to ask, as this can help you to focus too. But let the specialist 'lead', as they will have important things to tell you. Sorry if I sound patronising...it isn't intended, and I know you've been through all this before.

    The very best of luck/love Weeze. Let us know how you get on!

  • Sounds like my situation is very similar to yours. I've been diagnosed with a 9cm tumour on the upper right kidney and have also been advised that I may need immunotherapy after the removal of the kidney. I am now on a waiting list and have heard that the wait will be at least 6/8 weeks. My consultant is planning to use robotic keyhole surgery and he specialises in this technique. It's obviously a very anxious time especially as I am also type 1 diabetic using an insulin pump. How did you find your recovery period after the operation? I'm quite active and enjoy walking so wondering how soon I'll be able to resume normal activities.

  • I had robotic keyhole - 12 weeks ago yesterday. Everyone is different with recovery times. After six weeks I was beginning to feel I could resume some activity but had to be careful not to overdo things. Now I can do most things but I still get tired and still have to pace myself. The worst period was the first 2-3 weeks when I couldn’t do much at all and I dozed a lot during the day. 
    I was told 6-8 weeks wait for surgery but luckily it was brought forward so, fingers crossed, you might not need to wait so long. 
    good luck with the operation and try not to worry - I did and still do but it doesn’t do any good!