DH Potential kidney cancer. Any advice please

[TeachA]

This is probably in the wrong place but I just need to get it down somewhere. My husband was told today he has potential kidney cancer. There is a mass on his kidney - picked up on a CT Scan after he had passed blood and had pain back in January- and he has been referred to urology, appointment in about 2 weeks. Also been referred for a wider CT Scan to see if there’s anything anywhere else.

He went on his own to the apt this morning, as we didn’t expect anything bad, so he can’t remember if she says he has cancer or potentially has it. He doesn’t remember any details. He’s in shock tbh.

i just don’t know what to do. I feel useless and powerless. We are both 36, we have a nearly 3 year old and 1 year old. We both have busy, demanding jobs and lives. He wants to carry on as normal right now, which I will obviously do, but I have just been lying awake all night feeling like I’m going to be sick as I don’t know what’s coming. I’m too scared to google. On a practical level, what do we do next, while we wait for the referral to go through?

Any advice would be so appreciated.

No advice, just a hand hold.

Can he call back the doctor’s rooms to see if he can get the notes or a summary of his appointment? It must be common for people to react like he has, and not remember clearly what was said.

@TerrorAustralis Thank you. Yes, he is going to go in and request his notes on Monday (if he’s able to) just so we have a clearer idea of things.

The waiting is the worst part. I had an early stage breast cancer detected last year through a routine mammogram. It’s all dealt with and I’m fine now. But the time between detection and the biopsy was terrible.

Once he has more information you’ll know what he’s (and you all are) dealing with. The not knowing part now is hard and it’s really difficult not to catastrophise.

Let yourself have a cry, lean on your support network. And then you’ve just got to keep on putting one foot in front of the other and keep things as normal as possible for the kids and yourselves until you know more.

@TerrorAustralis Thank you so much. I’ve held it in all day and just reading this feels like I’ve had some permission to just have a good cry. So thank you for responding.
You’re right - it’s the waiting that is so hard and it’s not been 24 hours yet.

I’m glad to have been able to help in some small way. Sending hugs across the ether.

I'm going to be careful about details as it could be outing.
I had a family member diagnosed with renal cancer in 2020. Only by the time it was caught it had already spread to his lungs. Was told it was incurable but hopefully treatable, he started immunotherapy with a view that they would only be able to manage it. Surgery wasnt an option then.

Now, nearly 6 years later - he has no sign of cancer anywhere in his body, still having scans to check. He responded better to the immunotherapy than anyone could have hoped for. So much so, once the kidney tumour had shrunk enough they removed the kidney where it was never an option originally.

Cancer is not the automatic death sentence it used to be...
Best wishes xx

He had his notes today. They say: large mass in upper right kidney, suggestive of a kidney cancer.
He phoned urology to get a cancellation appointment and he has one on Friday afternoon so I’ll be going with him.
Any advice/experience from anyone is much appreciated. What questions to ask etc.

So you’re probably looking at (99% chance) that he will need his kidney removing, they rarely use chemotherapy for kidney cancers because the kidneys are so good at removing it from the blood , the chemo doesn’t work. Don’t confuse that with ‘chemo won’t work it’s bad’ . The recovery process after the surgery is about 4 days in hospital (less if they do a robotic procedure because it’s less invasive). Then it will be scans to check it’s not spread anywhere every 3 months for 2 years. (I have had kidney cancer and I’m 5 years clear). It’s not going to be fun but the treatment will be over and done with before you know it and he won’t have any systemic therapy so it’s just recovery from surgery x

pm me If you want xx

Hi.
Renal Cell Carcinoma survivor here! The shock is the worst thing and my mental health recovery has been harder than my physical.

There are 2 FB groups that have been invaluable to me: Kidney Cancer UK and Action Kidney Cancer.

Kidneys aren’t always removed. They call that a partial nephrectomy. It depends on the location of the tumour etc. I lost my entire kidney and have been fine without it.

Immunotherapy might be offered depending on tumour grading, size etc. I didn’t have that, but had six monthly scans that have now become yearly.

Don’t Google survival rates etc as the data is completely out of date. I think it’s from 2017? Treatments have advanced and detection rates have also.

Things may progress quickly now in terms of appointments, operations etc. I had a six week period between initial consultant appointment and kidney removal. It would have been less if I’d not caught Covid! If you’re by chance within the area for The Christie Hospital, you’ll be in very good hands indeed.

Hi OP

my husband was found to have a mass on his right kidney at the end of last year (around 10cm), after he had gone to the GP with blood in his urine expecting it to be kidney stones. Which he did have - in his left kidney - but the mass they found obviously took priority. They did a chest ct and a bunch of other tests, and he had the right kidney completely removed a few months later. Only then was the mass tested and it was found to be renal cell carcinoma. The waiting is awful, and ongoing - there is ALWAYS another thing that needed doing before we could feel like we had any idea what was coming.

The kidney removal was relatively straightforward, he was out in maybe 2 days? It was keyhole, with a bigger incision for the actual kidney to come through. Unfortunately the internal stitching wasn’t great and he was an emergency admittance with a bowel hernia a week later, which took much longer to heal, and then the kidney stones blocked the other kidney so that was an emergency stent needed…. My husband does nothing the easy way!

But the weird bit was that once we knew it was definitely cancer, it had already been removed. And whipping out the whole kidney was a relatively easy solution compared to other cancers. He was offered immunotherapy afterwards, but decided not to take it. He was back to work pretty much the next week, and now just gets regular follow ups.

What I would say is be prepared for the scans to show other things you didn’t know about. He was found to have an enlarged prostate and thyroid nodules that we wouldn’t have known about without the CT scans. They’ve been checked out now, but it did add to the list of appointments.

He didn’t google at all. I googled constantly as I needed to have read all the possibilities, and what I read seemed to be pretty much what we were told.

So yes, the waiting is hideous, and they’ll say “oh you need an urgent scan” and then the appointment takes a month to come through, while you’re thinking YOU SAID URGENT!! Keep on top of the appointments, take notes, write down questions (or sneakily record things to go back to later). I can’t believe I spent Dec-April in limbo and then somehow life’s been normal again for ages.

Sorry that was long! Happy to answer questions if it helps.

I was diagnosed with cancer in October and the first thing my consultant told me was not to Google. It's been sound advice. Every patient is different and you can terrify yourself with reading stats which aren't relevant to his case. Just take it one day at a time.

I recorded some conversations with my consultant on my phone as it can be difficult to remember what you're being told when your head is spinning.

Aww I really feel for you. I was where you are back in 2021 - husband was being scanned for something else entirely and they found a 10cm tumour. Whole kidney out and no follow up treatment, just the regular follow up scans. As horrible as it is - the shock, the surgery, the recovery etc, the worst thing for him would be the knock to his mental health. So just be prepared for that. Really encourage him to take advantage of any counselling offered. I found calling the macmillian helpline an absolute godsend for info, reassurance. Plus I was also told online stats are completely out of date so take no notice. Things have come on enormously. I also echo how good the other groups were mentioned above. A big hug for you. It’s tricky because you’re there to be “the strong one” but your life has been turned on it’s head
too xx

Thank you all so very much for sharing your experiences and for your kind words. It’s helpful to know we aren’t the first to go through this and we aren’t alone.
Thank you for all of the tips also. I have done a bit of googling, but trying not to do too much. I am so different to my husband, though, as I want to know everything but he doesn’t want to google anything at all.
I’m absolutely terrified about the next CT scan and if it shows anything more, but it’s reassuring to know that, if it does, it doesn’t always mean the worst thing.
Thank you for sharing about the mental side of things too. My husband buries things and doesn’t really open up much about his emotions - he’s being incredibly strong at the moment. I will definitely encourage him to make use of counselling services as I think it will be really good for him to just have a sounding board. He has me to speak to, obviously, but I sense he’s not sharing exactly how he’s feeling because he’s worried about upsetting me.
I have no idea of the size of the tumour or anything, except its ’large’ so I my guessing we’ll find out more about that on Friday’s appointment.