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Mainly just posting this because contrary to everyone's advice, I have been doing all the googling after my dad's diagnosis and unsurprisingly have freaked myself out quite a bit! Would be very grateful if anyone could help me out by saying if they've experienced anything similar to my dad x
My dad was diagnosed this past Friday with renal cancer and suspected mets in the lungs. I'm trying to stay hopeful as they're going to take the entire kidney out asap (which is the big one, about 7cm), and the lung nodules appear to be quite small, with the largest being about 5mm. I think we should get a phone call tomorrow or on Thursday to get a more solid treatment plan, but it looks like surgery then immunotherapy for now. Struggling a little though, as I asked the doctor whether smaller meant better, and she essentially said "not necessarily." I totally get that doctors can't go around giving out false hope just in case, but I would have thought that it's better for the mets to be small?
Also, after the kidney is gone, is it likely that my dad (aside from feeling sore and a bit grim post-surgery), will feel better? I'm very worried about my dad's weight loss and fatigue. I went back to uni at the end of August/beginning of September when he seemed pretty healthy, and I came back home yesterday. In that time, he seems to have lost a lot of weight. When I hugged him I was quite shocked at how much smaller he felt. I know weight loss and loss of appetite is usual when you have cancer, but does anyone have any advice for trying to help someone eat? The doctors told him to drink plenty, but I think the liquids are also helping to fill him up so he doesn't want food as much. Plus, the food he does crave, while healthy, is not especially calorific. Is it likely that he'll want to eat more after surgery? I'm trying to reassure myself that this is only going to go on for as long as he has the big one, and as that's coming out soon, maybe I shouldn't worry as much, but I don't really know what to do. He had to briefly go out this morning to delegate some work tasks as he's going to be out of action for a while, and that took it out of him a bit. He spent the day napping on and off and I couldn't get him to eat anything until about an hour ago.
If anyone has experienced something similar, any story/advice would be greatly appreciated!! x
I was diagnosed with a large tumour on my right kidney, Along with metastases in my lungs, one met in each lung, each being approximately 1 cm. I also have suspected malignant polyps in my gallbladder. All of this is very recent and I only had my right kidney removed four weeks ago (7th November)The tumour was removed and it was around 9 or 10 cm x 10cm. I went to the Royal free hospital in Hampstead in London and I had it removed using the robot that they have there. I went in on Thursday morning and had the operation later that morning, and I was on my way home on the Saturday afternoon. I do actually feel better even if it is just knowing that the tumour has been removed I saw my surgeon again this week and he is extremely pleased with my recovery. Physically the wound is healed and I feel much better although still a little bit tired.
As for follow-up treatment originally they planned to give me immunotherapy but unfortunately the Mets I have in my lungs are little too large as they are over 1 cm. Their intention now is to monitor my lungs with a CT scan every three weeks and they will see if they’ve grown. if they have then they will decide on the course of treatment which will probably be chemotherapy.
Please wish your dad the very very best and a quick and speedy recovery. I’m sure things will go better than you are probably expecting at the moment. Please keep in contact via this group as I have found it very helpful and comforting.
Best wishes for you both,
Hi Jess1308, as a community champion, may I welcome you to this group n repeat what Scubacrazy said about keeping us updated.
I had a 9cm tumour removed too( some years ago)but manually. I am on Pazopanib - like many folk in this group. It's not actually chemo but the side effects are similar. It stops the cancer from developing new blood vessels basically, either in cancer already there or in new sites. There are new drugs being developed all the time for kidney cancer, some "sister" drugs of Pazopanib for instance.
Thank you so much for your response.
I'm so glad to hear you're feeling better and I hope that your next course of treatment goes smoothly.
I do actually feel somewhat reassured reading your story already. Over the weekend, I think I let myself get bogged down by statistics and spent too much time analysing all the little things that the doctor said, plus nothing has happened yet so it currently feels like the longest wait for treatment in the world even though it certainly isn't!
Thank you again, wishing you all the very best too and I hope your recovery continues to go well!
Thank you for your response.
I think I will definitely continue to update to this group! I do feel somewhat better already, it's nice to hear from real people instead of trying to google everything, I think I've definitely learned my lesson on that front!
So glad to hear that your tumour was removed and that you're doing well some years later. I don't know what drug my dad will be on yet, but the one you're on gives me hope! Just crossing my fingers that the side effects won't be too bad, I'm thinking of making a whole load of soup to try and get my dad to eat a bit more.
Thanks so much and wishing you all the best :)
Hi again @jess1308, your idea of doing soup sounds a good one. Also adding cream/fullfat milk to meals, having full fat yoghurts- essentially the opposite to a slimming diet. It may be he'll get on better with little n often too.
I take it your mum's not around, which is why you're thinking of doing the soup yourself?
Btw, the docs can give your dad meds to deal with the side effects of whatever drugs they put him on.
Fingers crossed he'll soon have a treatment plan x
Hi again Buttercup!
That's a really great tip, will try and grab some yoghurts as well. His tastes have changed, but normally he's quite a big fan of the strawberry ones so will give it a go!
And my mum is about! I'm just trying to take some of the pressure off :) I came home yesterday, which is just a couple of days after diagnosis, but I didn't realise until then that my dad hadn't been working for a couple of weeks due to symptoms, so she's been doing her job on weekdays, plus some of his business stuff on weekends, so she's been completely shattered! Plus, I have younger sisters, and she's trying to focus on them too. I only have one more uni essay to go, but other than that it's me and my dad home in the daytime, so I'm attempting to take on some more of the housework like cooking and cleaning. I also don't think she's been able to see how little he's been eating, so I plan on trying to gently persuade him to eat little bits as often as I ca.
And I didn't know that! I just thought that they had to lower the dosage if the side effects were bad which scared me a bit because I thought that if it's less strong, it might be less effective? I have no idea though, I am definitely not a doctor :')
Thank you so much for your advice and reassurance, it's really helpful and I appreciate it so much x
you sound just like my younger sister-both such troopers! my dad has tcc in the renal pelvis which is different to your dads but totally with you on the trying to do what you can for your family, from the littlest to the biggest things! Everyone says how important it is to look after yourself too as it’s a lot to cope with-but it’s hard to understand what that actually looks like in your life!
i found cutting back on other things that didn’t necessarily need my attention meant I’m less likely to be as overwhelmed..and having just a few people I can turn to when I need to share & stop keeping it all to myself is also keeping me sane. as is taking a break, even if it’s just the cinema -or reading a novel, something I can get lost in for a little bit also really helps my overactive brain/worries just stop for a short while. And then there’s spending a bit of time with anything you love-which for me has funnily enough been my pets-their silly faces always get a smile out of me and I’ve come to realise how important it is to keep that love & feeling going as it builds your big heart and keeps it going to share with your family & friends too.
i know that’s not offering you any technical or practical advise about your dads particular cancer but you just reminded me so much of what me & my siblings have been doing for the past few months that I thought I’d share & let you know that we can imagine what your boat must be feeling like right now
all the best to you, your dad and your family :-)
I'm another one who has had a kidney removed and now has mets - but on treatment and doing really well. I've been on Pazopanib for three years now and totally stable. Little and often is what I'm always told about food.
Given his very recent diagnosis that's probably not helping at all with his appetite. It's a lot to take in and there's no doubt that I had a bit of a "shock" reaction - and for me the first thing that always goes is my want and ability to eat - so he may be feeling similarly.The strength of my treatment has been changed several times, 400 to 600 to 800 and back to 600. My prognosis hasn't changed with the lower dose - it's just what's suiting me best.
Re small mets - once you get the grading you'll have a better idea. My oncologist keeps telling me that my cancer - which was grade 3 in my results, is very slow growing (actually not growing on treatment) and they're totally unbothered by my lung met which is very small. So while it's too early to say for your Dad - small can be good.
Smoothies can be good as well as soup. It's liquid calories at the end of the day and nice and light if that's all he can manage. You can stuff all sorts into them, including grains.
Your family are lucky to have you! Cancer is a scary word, but there are lots of us here living just fine with it - and hopefully your Dad will do that too xx
Thank you so much for your response, that's really sweet of you x So sorry to hear about your dad too, I hope everything goes as smoothly and as well for him as possible :)
I think it's just been a bit of a shock on all fronts and I've totally scared myself by looking up too many things on google! It was also quite scary to see him look so much weaker after just a couple of months away from home, and I keep going back and forwards between best case and worst case scenarios in my head which is driving my brain slightly bananas!
My best friend has basically said the exact same thing as you! It's just a bit hard to get in the mindset of doing more enjoyable things because I don't want to leave my dad alone in the house, partly because I don't want him to be lonely, but also to try and get him to eat stuff throughout the day. And I feel a bit more useful doing some of the housework and things too. I am lucky that my boyfriend is with me, he's just a bottomless pit of festive cheer at the moment, making sure that we're all as christmassy as possible! So I think everyone has been able to keep their spirits up pretty well, but I agree that I probably need to find something to stop myself from overthinking (and googling) so much, it's really not been doing me any good!
And no worries at all on the cancer advice front! Got a call today, my dad's going to talk to the surgeon next week, so the actual surgery is probably going to take place a little later than we anticipated, but at least that horrible kidney will be out soon and things are happening! Then another wait for the lung nodules to be treated, and presumably another wait to see if it works. Information seems to come out only one step at a time, which I understand completely because they don't want to give anyone false doom/hope, but I'm sure that basically everyone on here can attest to how frustrating the waiting is! I felt so relieved when the doctor said that the lung nodules were only small and that the cancer wasn't anywhere else because I thought it would be easy to get rid of, but then she said that's not always the case because we have to look at what type of cancer it is first and it might not respond to treatment so we just need to wait, and I just burst into tears after that. But I guess wheels are turning! The big one is coming out soon, so that's a good thing! It's just the waiting game!
Sorry this turned into a much longer message than I intended! But thank you so much again, it does help a lot to hear from other people who are going through the same/similar things. My dad and I both like painting, so I was thinking of getting him a painting set for Christmas which we could both do to take our minds off things
All the best to you and your family too, keeping everything crossed! x :)
Thanks so much for your response x
I am definitely trying on the little and often front, he's just sort of turned a little bit nocturnal at the moment (which I think is totally down to the shock/fear of it all) so it's hard to get him to eat in the day because he's napping. He's awake from very early morning to early afternoon, waking up again just before my sisters get home from school. He did really well with dinner yesterday though, had a whole fish pie and yoghurt for pudding! He's nibbled on cereal and yoghurt today, so hoping he'll eat the sausages and mash for dinner tonight
That does actually make me feel a bit better met wise, I think I just want things to hurry up, it feels like it's taking forever even though I know logically that it isn't! I really hope small means good for my dad too! My boyfriend's brother is a doctor, and he says that we should remain cautiously optimistic at the moment, so holding tightly onto that! He also said that immunotherapy is doing wonders at the moment, so trying very very hard to stay off the internet and listen to that instead!
Ahhh I suggested smoothies, but he wasn't a fan of that one! Might try milkshakes though, they're a lot naughtier but he used to have strawberry ones as midnight snacks when I was little, so might try making mini ones that aren't as heavy. I didn't think of grains though! Might see if I can sneak some of those into porridge or something :')
Thank you, that's really sweet of you to say, just feeling a little useless at the moment! x But trying hard and keeping everything crossed, just currently very impatient! And thank you also for reminding me that people can live with cancer and live pretty normally, I was told that when my dad was diagnosed but it doesn't immediately sound real.
Really hope that things continue to go smoothly for you! And thank you so much for all your kind words, they have been a help xxx
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