Hope everyone had a lovely Christmas!
Just updating on my dad really as there's not long to go before the operation and I think we've got all the information we're going to before the big day on the 30th!
I think we've been told good(ish) things thus far. The main bad bit of news that we got was that the first doctor got it wrong about the size of the tumour. She told us that it was 7cm, but it's actually 12cm according to the consultant, which is quite a bit bigger and would maybe explain why my dad has been quite so uncomfortable! The cancer is also in the vena cava which means that they have to do open surgery and there are going to be two teams that carry out the procedure, one kidney team and one vascular team. That news was a little bit scary, I think because the idea of veins being involved is especially horrible! I know that my dad didn't really want to know much about how they were going to do it, he just said he's going to do as he's told with as little information as possible :') The thought of surgery in general is also just scary, I've heard complications are pretty rare but you can't help but worry a little! I think that for my dad as well, he's never had anything wrong with him before, so he's really not used to hospitals and especially not operations!
The doctor also said it's Stage 3b, which was actually weirdly good news for us as we were convinced it was much more advanced! After this, he's going to be put on Sutent for his lungs (I think anyways, my mum didn't know how to pronounce it but when I looked it up this was the closest to what she'd said :')), and the doctors seem pretty confident that it'll work. They said it has a 70% chance of working, but if it doesn't, they have lots of other things they're going to try which is comforting. Plus, they actually seem pretty calm in general about the lung mets, the doctor actually called them "negligible", which is a nice word to hear!
Still quite worried about the eating and weight loss though, he's dropped from his usual weight of 11st to 9st 7 in just a few months, and he's getting worse with his eating. He isn't vomiting at all or anything like that (though he occasionally feels a little queasy), but he just feels full all the time and the taste in his mouth is horrible. I also think that his fatigue isn't helping. He never feels like eating when he's sleepy (and he has been sleeping quite a bit), but he does seem to have this window early in the morning where he feels great, he just can't physically eat all his calories for the day during that period. The biggest winners seem to be coffee with cream, yoghurt, and he doesn't mind the odd mince pie with cream, but any meal no matter how big or small is becoming a struggle. I really hope his appetite comes back after the surgery, I've never seen him so thin and he wasn't a big guy to start with. He's aware he needs to eat but he also seems sort of convinced that after the surgery he's going to feel sore but essentially back to normal so he'll put on weight then. I've tried gently telling him that it might be a little optimistic but he's just finding food difficult and I don't want to squash any hopefulness that he's got about the surgery because as I say, he's understandably super nervous!
I thiiinnkk that's everything so far! Just quite nervous about the surgery - on the one hand, I want it to hurry up, on the other, I don't at all :') If anyone has any insight into the surgery or about recovery (especially with regards to appetite!), that'd be very much appreciated!
Hope you're all doing well and also another thank you to everyone who responded last time I posted, it really did help a lot!! :) x
Hi Jess1308, re your dad's appetite, sutent (Sunitinib) will probably make this even worse. I'm on Pazopanib, the next generation on to Sunitinib, and this affects my appetite/ taste buds. So much so, I have to have a week's break every 2 or 3 months. I'm sure others will confirm this.
Butit all depends on the individual ultimately.As you say, the size of his tumour will b affecting him. So once his kidney plus tumour is removed, he'll feel less full/ uncomfortable.
Ethelmay recently had her kidney out and was home very quickly after surgery. I'm sure there must b others too. Hopefully they'll share their experience with you.
Personally, my cancer had gone into the vena cava too. I'm currently stage 4 and have been living with cancer for 15 years, most of that time on meds, tho I only started in 2013, then had a treatment break 2013 to Feb 2019.
Remind us when your dad's op actually is n let us know how he gets on please.
Thank you for your reply!
I will definitely pass on that information to my dad, and I'm sorry you have to deal with that, my dad is quite miserable already with his tastebuds having changed so I can't imagine how frustrating it must be to have that continue when you're being treated. I'm glad to hear that he might feel less full though, that seems like it might be most of the eating problem at the moment so maybe he can enjoy some proper meals before he goes on the meds.
That's really incredible! I didn't know much about cancer before we found out about my dad (and I still don't!) but I had no idea that things other than chemo and radiotherapy worked so well on it.
I will do! :) My dad's op is on Monday morning, so getting quite jittery now and unfortunately he's probably going to see in the new year from hospital, but hopefully we can bring the party to him - albeit a very chilled out one!
Thanks so much again, and I hope your meds continue to treat you well!
I had my right kidney removed along with an 11cm tumour, back in November at the Royal Free hospital in London. I also had venous involvement with the tumour spreading into the inferior vena cava. They used the DaVinci robot on me, and although it was “keyhole”the resulting opening they had to make to remove the kidney with tumour resulted in a 7-8 inch wound, but even so, I went in on the Thursday morning, and went home on the Saturday afternoon. I also have a couple of Mets in my lungs which are larger than 1cm each, so I get my scan on New Year’s Eve so they can decide on what to do next. Good luck for your dad’s op, he’ll be out before you know it. And a happy new year to you and all of your family.
Hi jess wishing your dad all the best for his pending operation,
Hi Jess, just wanted to send your dad good luck for Monday and to let you know my husband had his kidney out by open surgery on the Tue and home on Friday, he didn’t have the venous involved though but did have 2 very large tumours. He’s 76 so no spring chicken but done extremely well. From my point of view it’s all the waiting that’s worse than the op. Good luck to him x
Thanks so much for your reply.
You sound quite similar to my dad, but I don't think they're using a robot on him. He might've quite liked that though, he's a bit of a Star Wars fan and that does sound quite sci-fi and cool! I hope that isn't rude to say! But I'm sorry that the wound was so big, I'm not entirely sure what we were expecting on that front, but it's comforting to know you got to go home so quickly. My dad really doesn't want to be in there for very long!
Wishing you all the very best of luck for your scan, I hope that you get to start the New Year with some positive news and a solid game plan!
Thank you so much, a very happy new year to you and your family too :) x
Thank you so much for your well wishes, keeping all my fingers and toes crossed :) x
Thank you for your reply.
I totally agree! Waiting has definitely been the worst bit so far! We thought we wanted the operation day to hurry up because time was going so slowly but now it seems to be going too quickly!
Really glad to hear that your husband did so well. My dad's 56 and although he can't now, he was doing manual work prior to October when he first started showing symptoms, so I'm hoping that even though he's a lot weaker, he's still got a lot of strength left in him!
And thank you again for your well wishes! x
Hi Scubacrazy good luck re scan for mets treatment
Let us know what they decide to do.
Hello Jess1308, Just wanted to jump in and wish your Dad (and you) all the very best on the eve of his operation.
Briefly: I had open surgery to remove my right kidney and its 13cm tumour (boasting again!) in May 2018. With similar vena cava complications. In hospital for six days; an intense, gruelling experience but also - ultimately - hugely rewarding and I look back on that time with entirely positive feelings.
Didn’t eat for several days in hospital, except for one (I think) unpleasant protein shake through a straw. And then one morning I was persuaded to try a small glass of orange juice and a slice of toast with marmalade - and I still remember it as one of the most fantastic meals I’ve ever eaten! And that was really the start of my recovery.
In the early days, your Dad might find some small entertainment in shocking visitors with the sight of his scar, raw and held together with a row of big staples. My scar goes right across my stomach, fully from one side to the other. But after 3 months I was strong enough to swim in the sea off the Suffolk coast, although self-conscious of my scar on the beach. Now, after 19 months, it has faded to a discrete line and is no problem, except it still itches a little when I’m tired.
I also had a lung met or two. Still have. Which were known about at the time of my op but weren’t given any emphasis. Just described as something to keep an eye on in the future. First things first: get that kidney out. I could have insisted on starting drug treatment early on but got the impression that - if possible - the longer the body is allowed to heal from the surgery the better. (I am only now reaching the point when hitting my system with the drugs is looking to be necessary.) But be guided by your Dad’s medical team.
So: this will not be an easy week for your Dad. His horizons will contract dramatically to deal with this but if he can retain a sense of humour and appreciate small victories, no matter how small, then that will stand him in good stead as he pushes those horizons back out again over the following days and weeks.
All the very best,
Thank you so much for your reply.
Not boasting at all! I've been calling my dad's one 'The Calorie Vampire' because of how big and mean it seems to be and I can't imagine how uncomfortable it is at his size, never mind it being even bigger! Unfortunately I think my dad is already going nuts at the idea that he might have to spend longer than a night in hospital! He's not very good at sitting still so the past couple of months have been horrible, he just wants to get going again as soon as possible. But I hope in time he'll be able to see it in a more positive light too. In some ways he's already made some positive changes to his life, he's finally stopped smoking and is determined to have a healthier diet and lifestyle post-op (which we had been going on about before this but I'm just glad it's happened at some point!).
And it's lovely to hear that you got your appetite back during your hospital stay! My dad's actually been really really struggling over the past couple of days. I think I spoke too soon when I made the first post because it's not just nausea anymore, he's not been able to keep anything down and he feels quite weak. It may be down to nerves as well though, my boyfriend's brother is a doctor and he doesn't think that his blood toxicity will have changed so drastically that this will have caused vomiting. I'm hoping that when he starts being able to eat happily again - which I hope is soon! - he'll feel much stronger.
I think my dad is also strangely looking forward to having a scar to show off :') And he actually doesn't mind the odd swim either so it might be something he can get back into to get his fitness back up! He's definitely not looking forward to the recovery period - as I say, he's very bored of it all now - but it's comforting to know that quite a few people seem to be back on their feet pretty quickly!
I think that the advice my dad's been given is similar, but there was talk of starting the drug treatments basically as soon as he's all healed up which will hopefully be in the next few months. That may be because my dad has more lung mets? I'm not entirely sure, we've only been told that there are "several" but they're also really quite small, and the doctors do seem reasonably chilled out about them, so the kidney is definitely the main horrible thing to deal with at the moment!
Thank you so much again, I will definitely pass on what you've said to my dad, he's been in reasonably good spirits for most of the time since I've been back at home, but the past few days have been a bit tougher, so hearing about cases similar to his that have gone well are a source of great comfort.
Wishing you all the best for the new year and your future treatment!
I hope your dads operation goes well and he is soon home. When I had my kidney removed I found it very helpful to have a pillow between my belly and the seat belt to make the journey home more comfortable and also to take it steady after the op. Try and walk a little everyday but dont push too hard. Easier said than done but best in the long run. My appetite did get worse on Sutent but I learnt just to eat little and often. I had my kidney removed in 2011 and have spread to my pelvic bone but I'm still here and living well not on any treatment at present xxx
Sending good wishes to you and your dad Jess1308 re his op today
Thank you so much for your response.
I will definitely pass on the advice to my dad for when he travels home! I think he's a little nervous about the pain but I hope they put him on some good pain meds so he won't be too too grumpy about moving around, apparently they're going to try and get him walking tomorrow, so hopefully he won't find it too difficult!
I hope my dad learns to do that too! The past couple of days have been really difficult with food but I think that was at least partly down to nerves. I say that though, even though he'd been quite miserable with food all day, he did start to get hungrier after 1am when he wasn't allowed food anymore! Which is typical for him, he always says that rules are more like guidelines :')
Thank you so much for your helpful reply and well wishes again, and really glad to hear that everything went well for you!
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