Kidney cancer T3a and Leibovich scoring

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Hi everyone, my name is Leah and I'm writing on behalf of my dads cancer journey so far. We have had the worst couple of months and days like today I've felt so lost. My dad (age 62) had a tumour discovered in August 2023 and it was around 7cm, his consultant opted for a radical nephrectomy and he had the kidney and tumour with quite  a lot of fat around it removed. The recovery was very tough and extremely hard to see him struggle daily but as the hero he is, he got through it and looked brilliant within 4 weeks. He was diagnosed with T3a clear cell carcinoma and grade 4 cells which, devastatingly are the most aggressive and likely to spread. He was also placed on Leibovich scoring system as a 7 which is basically 70% chance of reoccurring. The consultant didn't give him any other treatment as he said if he was worried, he would have put him in for therapy, but he was very happy with how the op went and was confident they removed everything and more. So fast forward to January 2024, when he has had his first scan of his 3 monthly scans going forward and they've said everywhere is clear however a nodule mass has been discovered on his adrenal gland on the same side of the kidney that was removed. We're trying to be hopeful  but we know it's a possibility it's cancer. 
I was just wondering if anyone has or is in this same position and could shed a bit of light on these very dark clouds hanging over us at the moment. Being diagnosed with cancer is a very lonely place at times and my dad has every bit of support in all of us but it would be great to hear from people around that have dealt with similar. 
Thank you very much! 

  • Hi Leah, first of all, your dad is lucky to have you looking out for him! It's bound to be a worrying time for you all. Like your dad, I had a radical nephrectomy - mine was at the end of November. My tumour was Grade 3 with a Leibovich score of 6 and I have been recommended to have immunotherapy treatment to improve the chance of no recurrence. The drug I'm having is Pembrolizumab and I'm starting treatment the week after next, once every 6 weeks for 9 treatments. Obviously, I don't know how your dad's medical situation is different from mine and he might have medical conditions that you haven't mentioned. Do you know why he wasn't offered the option of immunotherapy? It might be worth asking if you're not sure. Also, did they not remove the adrenal gland with the kidney, as it sits at the top of the kidney? Sorry for the questions! Try not to worry before you know what the mass you mention is. There are so many different treatments available now. The best thing you can do is keep your dad company and if he can, do some things he enjoys - distraction from all the worries really helps. Best of luck going forward.

  • Hi there, thank you so much for reaching out and giving me your experience I really appreciate it. He's got 0 health conditions honestly he's absolutely spot on health wise. All the consultant said was that he was very confident he got everything out and more to be on the safe side but we did think surely he should be given something else? And no they didn't, I thought after researching it that it should be have been removed but apparently they don't like taking them out especially if there's no sign of cancer there on them. It's all very worrying as I wish we had more things offered to us at the time. Well he's been building a gate today for my garden haha so I'm keeping him busy as he's feeling great x

  • Ah I see. I'm not sure now if I have my adrenal gland or not, I'll have to ask! It might depend whereabouts on the kidney the tumour is - I think mine was at the top so perhaps it all went! I'm glad he's feeling well. I recovered ok from my op but for some reason I'm getting a bit of pain by the big scar they removed the kidney through when getting out of bed after laying down all night. It had got better a month or so after the op but the last week or so I feel i've gone back a bit, so trying to take it a bit easier. But you do worry about every twinge anywhere, wondering could it be something bad. And when I'm tired I think is it normal fatigue or something else. What part of the country are you in?

  • Well my dad still gets little niggly pains around that area too and he says it's a reminder but apart from that he's got nothing, he didn't have any symptoms beforehand and he had stage 3 cancer so really.. you can see why we worry haha! We're in Cheshire but our consultant and hospital is in Liverpool , what about you?. We can't fault the care we've had so far it's been brilliant and very fast, I just wish this nightmare would end. My mums done a bit of research tonight and she has said what you've said, they remove the adrenal gland if the tumour is close so I'm not sure my dads would have been, I'm sure they would have removed it in a if they had any slight reason to. Xx

  • Oh Yes I can understand the worry completely. I had no symptoms and my tumour was found in an ultrasound to check my gall bladder so was a massive shock. It's really hard to process. I'm having this treatment not knowing if it's necessary or not, as with the aggressive cancer, they can't tell who might get a recurrence from tiny cells that have escaped and who might not. But I feel I have to give myself the best chance so I'm going to do whatever I can. I'm hoping side effects won't be too bad - they sound tolerable from what most people say, so fingers crossed! I start next Monday but today I have a CT scan and on Thursday a pre-treatment consultation to explain what happens etc. I live in a London borough (Bromley) and I had my op at Kings and go to Guys for oncology appointments etc. Keep in touch - you can send private messages if you like. I hope your dad continues well x

  • Hi, I was wondering how your dad is getting on now?

  • Hi there :) thanks so much for getting in touch and asking how my dad is, that's so thoughtful. He's doing absolutely amazing at the moment, shortly after my post my dad got the news that he has NED and that they don't want to see him until august. They had done an MRI scan on the 'mass' found and they basically said it was scar tissue from his op and there was no cancer. This was one of the worst waiting times we've had and I wish the nurse hadn't have told us it was a mass on the phone, however they got my dad in instantly for an mri on the Friday and then he had the results on the Sunday. We are aware that with his type of cancer and the aggressiveness it can come back but we are currently enjoying our 2nd holiday since his news, enjoying every moment we can with him. How're you doing lovely? Xxx

  • Hello, so glad to hear your dad is doing well and enjoying life. Thanks for asking -  I'm doing well thank you. I've had 2 treatments of the 9 I'm scheduled to have and side effects are not too bad so far. I am more tired at times and have had a bit of tummy upset and nausea but luckily these didn't go on too much. At the moment I have a really dry mouth, which is a nuisance but I'm managing - just got a very good moisturising mouthwash which helps - and always have a drink of something nearby. I get a bit of itching but again, manageable with moisturising - it's mild really. My mum has been ill in hospital for 6 weeks but is home now so that has been hard but at least shifted my focus off myself! No time to worry about the future! My niece got married last weekend, which was a lovely family event and I'm going on holiday soon to Northumbria with my husband, so looking forward to that. I hope you dad continues well Slight smile

  • Hi there

    So sorry for my late reply, we got stranded in Dubai during the storms and only got home last night, very eventful way to end our holiday but we were lucky to get a flight back as some people are still there. It's so nice to hear from you and I really appreciate you asking how my dads getting on. I wanted to explain further how his appointment went back in February. After reading countless forums and hearing from yourself, another person who is in a very similar situation to my dad, there was undoubtedly many questions we had lined up for my dads consultant about further treatment, such as immunotherapy to prevent it from reoccurring. We also wanted to ask questions about why the adrenal gland was kept in during surgery etc. So to try and keep it short he said my dads tumour was primarily at the bottom of the kidney, nowhere near the adrenal gland, if it was closer he would have removed it. However, removing the gland can come with many complications afterwards, so he was happy enough that he was able to keep it in, although I've read many people are fine without it so I think it depends on the type of person. With regards to any further treatment he said my dads cancer, although aggressive, it was slow growing. He also said that all the margins were clear from the tumour and that he was very certain that if it returns they'll be able to tackle it. He said they have had people with this type of cancer but stage 1 and it's spread like wild fire and people who have stage 3 and they've been cured. So my parents left feeling they could trust what he was saying and we've tried to just put it to bed for a bit until we need to (hopefully not) in the future. 

    I'm so sorry to hear your mum has been in hospital for so long during this this time for you, that must have been so hard for you especially days you're not feeling 100%. I'm hoping that the side effects don't get worse over time, are you on a 3 month scan routine or? My dads next scan isn't until August xx

    if I don't hear from you beforehand, enjoy every moment in Northumbria, you really deserve it