Partner has stage 4 kidney cancer

[sparkellie]

Hi. I'm completely at a loss right now and hoping just writing everything down will help, so sorry if this is long!
My partner went to the doctors about 5/6 weeks ago with lower back pain, they thought it was kidney stones, and ordered a ct scan. The scan showed enlarged lymph nodes, and he had blood tests and was referred to haematology, and for a chest x-ray. At 6am the morning after his blood tests he had a phone call from out of hours asking how he felt, and telling him to go to hospital if things got worse. He was due to go to the doctors for more blood tests for his haematology appointment 2 weeks ago on Mon, but didn't feel well enough, so rearranged for the next day when i wasn't at work so i could go with him. On the Tues he was too breathless to get to the doctors and struggling to breathe so I called an ambulance. Long story short he was diagnosed with a huge blood clot on the lung and admitted and put on blood thinners. In hospital they were working on the assumption that he had lymphoma and he saw the haematologist who told us how treatable lymphoma is etc etc. He had a biopsy last Tues which showed that he actually has kidney cancer, which has spread to his lymph nodes. He also had a ct scan which showed lesions on his lungs. Due to this his care has been transferred over to the renal specialist, who said basically its terminal and palliative care only. He started a chemo tablet yesterday, the lowest dose, to try and stop any further spread, but nobody has even told us where exactly its spread to or what to expect. It doesn't help that he doesn't want to know too much, and I don't know if he's really taking it all in. Everything has happened so quickly.
I have 2 kids (14 with asd and 11) and they know about the blood clot and the biopsy, but nothing else. I know I need to tell them what's happening, but need some support with the best way to do that, I don't want to fuck it up. I'm going to ask for a referral to macmillan to try and get some help with that, but have no idea how long he has left. The consultant wouldn't say anything other than see how he reacts to chemo and that he is weak, and when he asked if he would get out of hospital would only say 'that's the aim'. I know they can't give any absolutes but I feel like I'm floundering around with no idea what to expect.
Any advice from anyone who has been in a similar situation would be gratefully received. Thanks if you managed to read this all!!

I don’t think Macmillan would have access to his notes. You need to go through the hospital for that. Is there a specialist nurse as a point of contact?

Thank you. I will try and speak to someone tomorrow then.

Thank you. We wouldn't be eligible, but hopefully they will be able to help with claiming pip etc

The chemo tablets he is on are, I believe, to try and stop any further spread, rather than treat what's already there. As I understand it kidney cancer doesn't generally respond to chemo well, but possibly for the lymph nodes?

They won't be chemo. Very unlikely. The cancer in his lymph nodes will be kidney cancer cells. His medication will have a drug name on it so you can ask to see it or be told what it is. The drugs are meant to stop the growth of existing tumours and prevent new ones. But ask the Dr.

He has a right to see his scan results and be informed where it has spread.

'Distant' is not a good enough answer from the Dr.
The usual place first is the lymph nodes and lungs. It can also appear in the liver, bones and brain. You need to ask- or he does. He also needs to ask how many tumours are in his lungs- if it's extensive or a few small ones.

There is a nurse helpline on the Kidney Cancer UK site. They can answer your questions.

You can also ask to see another consultant at any hospital if you are not happy with the one he has now. There's a huge variation across the NHS as to what treatment is offered.

@User56432 I believe the tablet is called cabometyx. The doctor said it was a chemotherapy tablet.
I will push the consultant when I see him to tell me exactly where it has spread to. I may well consider asking for a different consultant if he won't give me any more answers, as not knowing is making an already stressful situation worse.
I don't know if the fact he has a blood clot, and is on blood thinners for it affects his ability to try other drugs/therapies etc?

What a terrible terrible shock for you both. Get an application off for PIP immediately. You can fill it out and he can just sign the form. Apply for a blue badge so once he's out of hospital you can park close to places. I'd ask him to get married. I'm not sure if there are widows benefits but perhaps someone can come along who knows about that. Make a will. You might find they cannot cure the cancer but can manage it to prolong his life. Does he have life insurance on your house? Go to see your GP explain everything and say you are feeling too overwhelmed and stressed to work. Your GP should sign you off on sick. I hope you have a good sick scheme. Your DP should be signed off sick too obviously. I hope he has a good sick scheme too. I'm so sorry this is happening to your DP OP. I'd see what happens before telling your DC. Ruth Straus foundation offer free counselling to children losing a parent or parent figure.

My Dad had KC. Unfortunately found too far spread for any treatment, 12cm tumour spread into renal vein, in both lungs, bones, most likely brain too. Definitely find out how/where the spread is as others have said.

I am sorry you are facing this. The consultant will be taking account of how much information your partner wants.

One thing to consider is asking if your partner is happy for the consultant to talk directly to you.

I'm sorry you are going through this.

When you see the doctors you could ask if you can record the consultation on your phone to listen back to as it is hard to remember what they say.

In terms of telling the children, I had to tell my children when my partner was diagnosed and when his condition became terminal. My advice would be to be honest with them. I told my kids that I would always tell them the truth and that they could ask any questions and I would do my best to answer. I did not want them to over hear anything or hear from anyone else or read a letter / text etc with info I hadn't told them. I kept it simple and told them the key facts. I used clear language no euphemisms. I told them that it was upsetting and it was ok for them to be upset but also ok for them to be happy and still do happy things with us and with their friends.

I spoke with the school to make sure their teachers were aware.

The children found it hard to tell their friends so that was something I helped them with by speaking with their close friends parents.

It doesn't help that he doesn't want to know too much

It sounds like lack of info is because the consultant is respecting the patient's wishes. For planning OP understandably wants a load of specific info, obviously. There should be a way for OP to sit in on appointments and get info the patient can also choose not to know about, if patient tells consultant that's what patient wants to happen.

I believe the tablet is called cabometyx. The doctor said it was a chemotherapy tablet.

It's not chemo. It's a TKI- abbreviation for 3 longer words.
Sorry- not being pedantic but trying to help.

Thanks @caringcarer I will try and look at all of the financial side of it over the weekend. I don't want to get married because he's going to die. It's never something either of us has been worried about, and it would seem the complete opposite of what it should be to me. We rent, so the house isn't tied up in out finances, and I should be able to manage without his income. I will try and have the conversation about a will with him, as he has savings that I know he would want to go to the kids. We both work in the same place, and sick pay is OK, I'm hoping to have a month now to try and get everything sorted and him home (which depends on him coming off the oxygen) and then go back to work for as long as it is manageable. Again, so much depends on his personal prognosis it's hard to plan too far ahead.
@Hotpinkangel19 I'm so sorry. I get the feeling this is kind of where he is, but it's hard to tell, as the blood clot is complicating things, and it's hard to know what is caused by the clot and what by the cancer. I'm trying to hold on to hope that if they can get the clot cleared that his body will become stronger again, but it can be hard to be positive when he can barely get out of bed.
@frolp I don't think that's why the consultant won't say anything. He specifically asked the consultant whether he would get out of hospital and he wouldn't answer ('that's the aim'). Also I've been there both times he has seen him and he's never said he doesn't want to know, just to me and his brother. I asked him if he was happy for me to ask the consultant when he wasn't there and he said that was OK.
@Slum I'm sorry you had to have that conversation. Just the thought terrifies me, but I know I can't avoid it. I'd hate for them to think I was hiding things from them or lying to them. Obviously it's summer holidays at the moment but I will make schools aware in Sept.
@User56432 thank you! The consultant definitely said it was chemotherapy. What difference does it make? Sorry for questions, I've had a quick Google, but can't see much. Does that mean if it doesn't work there are other things they can try? Or is that specific by person/situation etc?

Your partner should have a Cancer/ Macmillan nurse who joins up the dots with communication . That nurse should be able to help you with everything that you are worried about…am so sorry that this is happening to your partner. 💐Xx

Thanks @Amniceandgenuine
As of yet he hasn't seen anyone specifically for him, but we did see the palliative care nurse today (for pain relief) who said she would refer to macmillan tomorrow, so hopefully someone will be in touch this week. It would be so helpful to have someone who is there specifically for him, as the nurses and consultants are so busy, and actually catching them to speak to seems to be dependent on happening to be on the ward when they do their rounds.

I think sometimes a dr may say it's chemo because it's simpler than going into the finer detail. It's a targeted therapy and is often combined with immunotherapy.

I'd hate you to be bogged down with this as it's not that relevant considering everything else. There are many other TKIs but Cabo is supposed to be a 'strong' version, often used when other types haven't worked.

It sounds as if the blood clot is the most urgent thing to deal with and he /you need to know if that is a result of the cancer spreading to his lungs and how extensive it is. Tough questions.

Thinking of you.

Due to this his care has been transferred over to the renal specialist,

It's not clear if he's being treated by a kidney surgeon/ specialist or an oncologist who specialises in KC.

He needs an oncologist. Not just a consultant who treats people with all kinds of kidney issues and isn't a cancer specialist.

@User56432 thank you for your patience! That makes sense given what's been implied about the spread.
I'm not sure they know to be honest. When they thought it was lymphoma they said that blood clots can be caused by the cancer, but I'm not sure if that's still true if it's kidney cancer and not lymphoma.
Sorry, within the oncology department he is being seen by the renal division as it were instead of haematology. Hope that makes sense!

OP - you poor thing. I'm so sorry you're facing this. I had kidney cancer 9 years ago and have now known and met many people with kidney cancer. Since I was diagnosed many new treatments have emerged so that's a positive step. There's a UK based group on Facebook called Action Kidney Cancer. It's an extremely supportive group and there's a lot of expertise there. One of the people who runs the group (Rose) is very knowledgeable and a great font of advice. I'd recommend you and your DH join the group. Wishing you all the very best.

Thank you. I might have to consider rejoining Facebook, it seems there are a few groups on there that may be helpful!

How's he getting on @sparkellie