Not really sure where to start...... last Tuesday my 41 year old partner (I’m 32) was diagnosed with stage 4 kidney cancer with spread to lungs (no symptoms other than night sweats). Blood in urine prompted an urgent docs visit and from then things have moved very fast.
This morning he went for biopsy and results of a brain scan he got 2 days ago and told 3 small tumours on the brain also. I’ve kind of come to terms with the fact that this is incurable but I guess I just want to know what the prognosis might be for him? I’m scared to ask the professionals this in front of him as I’m not sure how well he will handle that. He’s already said he doesn’t want to know and so I have to respect that but I do want to know without him knowing if that’s possible.
He has an meeting on Tuesday coming to discuss a treatment plan, I’m terrified there will be even more bad news although I don’t know how much worse it can get. I’m terrified of watching him suffer, none of us know what to expect. He is actually handling this better than me I think. We are both all over the place.
Im staying positive for him and hoping for a miracle cure but I also need to be realistic and try to plan for a future that he most likely won’t be in. This is a seriously hard pill to swallow but I know however terrified I am he must be feeling even more so. I just can’t even describe the pain of this devastating news so I think I’m looking for people in a similar situation to just tell me they are in remission (no matter how temporary that might be) from stage 4 kidney cancer with brain mets and if not perhaps how you cope with news like this. I just need people to talk to about this. How do I help him when I can barely accept this myself??
i just need to find some hope right now.
PS this is my first post but I’ve been reading so many posts on here and anyone going through this you are all so brave and inspirational. Please provide me with some inspiration now when I need it the most so I can stay strong for my partner in crime.
Welcome to the community although it must have come as a complete shock having to do so.
Just to say from the start that I am Stage 4 and have been so for over four years now and am still on my first line treatment.
Things will be much clearer for you when you attend your meeting next Tuesday. Write down any questions you might have and tick them off, write the answers down as you get them. You will also be given some phone numbers to call if you need them for medical reasons, make sure you check what number to ring if you want clarification of something you think of after the meeting.
I also asked to be sent copies of my CT scan reports, any blood tests results and to be copied into any letters to my GP. You can get copies of the CT scan if you pay for it but without medical training they are virtually impossible to understand.
There are several different types of kidney cancer and treatment can vary depending upon the type. I have Renal Clear Cell carcinoma (RCC) which is the most common type. There have been significant improvements in treatments available over the past ten years and although they cannot cure the cancer yet they are significantly extending the life expectancy of patients. You should therefore be very cautious of any statistics you might come across as they are likely to be out of date as the situation is changing daily. As I said at the start I am still on my first line treatment and as far as the cancer is concerned I have few issues. I suffer from other medical issues which cause me much more difficulty.
My mets are in my abdominal cavity and my lungs so I have little experience of the treatment of brain mets but this will be clarified at your meeting next week. The treatments available to me all have a list of very scary side effects but if they are too extreme they will either reduce the dose until they are manageable or switch to another treatment. I have been lucky that I suffered no extreme side effects to begin with and my body has now adjusted to cope with those that remained.
The emotional and practical side of a cancer diagnosis is as difficult to deal with as the medical and I suggest that you and your husband call the Macmillan helpline on 0808 808 00 00 and explain your situation. They can offer you emotional support and practical advice including thinks like your employment rights and also give you the opportunity to talk to a financial expert who can offer advice about claiming life insurance policies, benefits entitlements, claiming pensions etc. Not having to worry about the practicalities mean that you can focus simply upon the medical side of things.
You might also want to consider joining the "Supporting someone with incurable cancer" group (click here to go directly to the group) as you will find others there who are having to deal with similar situations. If you can persuade your husband to join there is also a Patients only group "living with incurable cancer" group (click here) but again this group is a safe space for the patient only and not family members.
We do not cope well with uncertainty so things will get better once you have had the meeting next week. I know when I was first diagnosed I could break into tears at anytime if I started thinking about the future. Once I know the medical plan I had something to focus on. In the meantime try to keep yourself busy and distracted, anything that keeps your mind busy is good at this stage.
If you need to ask anymore questions please come back again but remember that until you get the information from the doctors the possibilities are so wide it is difficult to be more specific. Also remember that we are people in a similar situation rather than medical experts.
Please let us know how you get on at your meeting and wishing you and your family all the best,
Thank you Gragon. Your story is truly inspirational.
i think I will call the Macmillan line this weekend to discuss everything.
i will let you know how we get on after Tuesday and good luck to you too. Sounds like your kicking cancers butt!!!
Hi Lou. Welcome to the group, there really is excellent advice & support available to you. My story is somewhat different to yours as I had kidney cancer, (renal cell carcinoma), & had surgery late November 2017. I'm doing well & all scans since are good. Gragon gives excellent advice in that it's important to get advice based on current research & results. Some of the information on line isn't that up to date. As he says, treatment has improved considerably over the past few years & that improvement is on going. Your next clinical meeting should give you a lot more information regarding treatment options etc.
Macmillan has plenty of professionals who can advise and support you too. They were, and still are a great support to me and my wife. You will probably be given a contact number so you & your partner can ask questions when you have your next clinical meeting. I find that my dedicated oncology nurse, Sian, is very helpful & supportive.
My best wishes to you both. Ray
I’ve had so many business cards passed to me in the last couple of weeks my head is still spinning. But in the next meeting I will discuss things with the Macmillan nurse as she seemed lovely when I first met her.
Ive already written down a list of questions and I’m adding to it every 5 minutes at the mo!!
well done you on beating this horrific disease and it’s great to know the Macmillan nurses are so great as I think I’ll be talking to them a lot over the next few months. And yes, Gragons reply is so inspiring, he really is amazing.
Im just so terrified for Liam and bursting into tears every 5 minutes at the moment. I just can’t stop thinking that he’s only 41, we’ve only had 6 years together (no kids yet) and it feels like we’re running out of time. My heart is absolutely breaking writing this. I know I need to stay positive for him but every time we go to the hospital they just keep delivering more and more bad news! I know how bad I’m feeling but I just can’t comprehend how he is feeling right now yet he is the one comforting me!!
I personally am just praying that technology keeps on advancing at a speedy rate and everyone who suffers with this disease is cured xxxx
Hi Lou. it isn't just the patients who goes through this, but the nearest & dearest too. Do continue to contact via this site and let people respond to comfort you. Family & friends really are an essential support network too, so do confide in someone close on how this is affecting you. I'm 15 months post op but won't be classed as in remission for another 4/5 years. I'm well on the road to that now, but absolutely accept I have a long way to go.
You are absolutely amazing for supporting your partner, so do please let amazing people support you too.
I'm in a similar situation to you, my hubby is 54 and has had Kidney cancer for a few years now. If you click onto my name I think you can see the details there. What I wanted to say is more about you as I know it is just as difficult if not more so watching the person you love going through this. I have cried and cried over hubbys diagnosis, it has now gone to his lungs, and I felt as if we had no future, we wouldn't grow old together, he wouldn't see his grandchildren grow up, we wouldn't do all the things we had planned for the future. We are lucky that we talk about everything but there are times when I bottle it up and and just want to hide away from the world. Being the carer also means people seem to overlook you and will ask how hubby is but never how you are.
You will be ok, once you get more info and you know what you are up against and have a battle plan you have something to focus on. In time you will be able to talk about it without getting upset because this becomes normal. My timeline is now life before cancer and life with cancer, you will be strong enough to do this I promise.
dont be afraid to ask for help, it's not a sign of weakness, the cancer nurses and your own GP are there to help you too. I am so glad I found this site and wish I had found it years ago, everyone on here is supportive and can give you 1st hand knowledge of what to expect....avoid Dr Google as he will scare you and most of the info is out of date
most importantly make sure you Have time for yourself, just to be you for a little while. Go for a drive, read a book, meet friends for coffee, anything just for a little "me" time, its not selfish it's a way to re-charge your batteries so you stay strong.
Thank you. It’s really nice to meet people in similar situations even though I wouldn’t wish this particular situation on anyone.
I’ve decided to ask for his prognosis as I need to start planning and I think they are very soon going to tell us this has gone from incurable to terminal due to the secondary brain tumours. The oncologist said there are things they can do to delay but not cure.
Its the brain tumours that are freaking me out. I’m so scared for him and for me with life after him. I’m glad to hear things will start to calm down for us. And your right I will definitely need some me time. At the moment I just want to spend every waking moment with him because I don’t know when it will be our last.
I hope your husband continues to beat this horrible disease, and that my partner miraculously does too, fingers crossed.
My partner who's 47 had a ct scan on Tuesday found out on Wednesday he had cancer of the left kidney. They don't think there is any spread but he has to go for further ct scan and has a mdt meeting next week to discuss treatment plan. It's such a horrible scary place to be in we had to tell our 3 boys last night. Like your partner no symptoms apart from blood in urine. Sending you lots of positive thoughts xx
Morning Lou and Alceer,
My mum has kidney cancer- it started just over 5 years ago. Since she’s had to major ops - left kidney removed initially whem she was diagnosed straight after my father died-
Oct 2017 it came back as a large size tumour in the brain with 2 small size - they operated and sent us home again.
July 2018 it had spread father brain and lungs - this time mum has radiation therapy with no difference - she was offered palliative chemo but at the age of only 72 she refused.
Over the last 2 weeks it has spread further in the brain - she’s not doing very well - we are scared and trying everything possible to extend her life - docs have sent her home with morphine injections etc which has put us more on edge.
She now needs support with practically all her needs and heart breaking to see our detiorate each day...
McMillian nurse saw me struggling and informed about this forum so here I am - reading stories about your family has stopped me my tracks...
i wish I was doing more for my mum but sure what else I can do!
With kindest regards,
Im so sorry to hear about your mum. It must be absolutely devastating for you when they refuse treatment but ultimately that is their decision. Is there any way she would reconsider?
It sounds like you are doing everything you can for your mum and this community is excellent for support and just generally getting all of your feelings out in the open to people that really do understand what you are going through. Please don’t beat yourself up and make sure you take a little time for you too.
The Macmillan nurses are great for all sorts of support for you and your mum, I haven’t called the helpline yet but I’m definitely going to as I’ve heard they can help with a whole range of things.
Im sorry I can’t really offer much advice to you as I’m struggling to come to terms with things myself at the moment but just know that we are here to listen whenever you just need to chat and get your feelings heard.
This community has brought me hope as I have been up through the night trying to find similar stories to mine and there are so many brave people on here.
there is also a carers only group that might be able to help you.
Thank you for getting in touch and for your kind words and encouragement.
I think it helps when someone can listen to your frustration or worries.
I too have read similiar stories and found that so may people are going through the same fight.
Its true we need to stay strong - but trying to take time out has been difficult for me - I feel guilty that I’m not there....
So sorry to hear about your mum. It must be heart breaking watching some one you love so much going through all this pain and trauma. She is a very brave lady to make such a hard decision and refuse palliative chemo but I can understand why and I hope she has talked through her decision with you.
DDon't feel guilty taking 5 minutes for yourself, you need to re-charge too , it's incredibly hard watching this happen to someone you love.
Stay strong xx
First of all I'm so sorry that you have had such awful news, mentally, this is really hard work.
I'm stage 4. I have a significant met on my breastbone and a small lung nodule and skull lesion. I have been on Pazopanib now for 2 1/2 years and I'm very stable. This is the normal first line treatment. I take it every day and occassionally have a week's break if the side effects are getting too much, or for very special occasions (my wedding haha), I'm currently on my 4th break and I feel great.
Pazopanib can actually shrink tumours. People fall into one of three categories, tumours shrink, they stay the same, or it doesn't work and they grow. More people are in the first two categories than the last - it's very very promising x
Advanced kidney cancer treatment really is at the forefront of advances at the moment, it's changing and improving all the time.
Going forward I can tell you that I get very tired sometimes and just need to sleep or rest. I've also lost a lot of weight through a combination of sickness and diarrhea, despite both actually being quite well controlled. I've had three different anti nausea meds, so don't be afraid to ask to try something different if the first isn't working well. I've run the gamut of the side effects, but a number of them didn't last too long and subsided again, so that's worth knowing.I still work, I've just gone to part time from full. I'd go mad if I wasn't doing something! I still travel. I still do pretty much everything I've ever done just at a slightly slower pace sometimes.Mentally - one of the most important things for me has been to continue to plan for the future. I might not get there - but I'm not ruling it out. Plan for the future and live for today.
Lots of luck to you both
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