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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Stage 4 and no plan for my mum yet

scotabroad
Posted by

Hi Folks

My mum was finally referred to hospital 2 weeks ago and after scans,Biopsy,  etc it was discovered she has Kidney cancer that has spread to brain and Lungs.

As I live in Norway now I am looking to help my parents as much as possible with the day to day stuff as I cannot be there emotionally day to day .

What I was wondering is the specialists met last Wednesday to discuss her case to see what options are available, if any but we have not heard anything back yet. How long is the norm between diagnosis to plan to treatment as I have read online it can take up to 2 months which I am astounded at.

She is currently on steroids to help with the swelling of the tumor in the brain but apart from that we have heard nothing

Thanks in advance for any info

Gragon
Posted by

Hi ,

I'm sorry to hear about your mum but welcome to the community.  It can take some time as they sometimes have additional checks to such as any pre-operation assessments.  It is worth chasing up your mum's GP to ask them to contact the hospital to see what is happening.

At the same time you could ask the GP to make a referral for a Macmillan nurse who could assist you and your parents in lots of ways, not least by finding out what is going on.

It is a bit mundane but how quickly things occur can depend upon the availability of services in the area where your mum lives.

As your mum has tumours in the brain I suspect that they will want to move quite quickly.  Kidney cancer is normally slow growing and would not normally advance much in the kidney and lungs in two months although we would all prefer that they be dealt with asap.  As it is also in the brain they may focus on that first and other treatments afterwards.

Just to offer some reassurance I know several people who have had treatment for brain metastasis who have recovered well and new treatments for kidney cancer are much more effective, I have been on mine for 5 years so far.

Please come back if you have anymore questions and please let us know how your mum gets on.

Wishing you and your family all the best,

Gragon xx

scotabroad
Posted by

Hi Gragon

Thanks for replying and I will pass on the information about contacting the GP regarding the Macmillan nurse and contacting the hospital.

Will keep you updated once I know, but I am having to get info 2nd hand as the NHS will not speak to me directly on phone or email even though I asked my mum to authorize it due to data laws.

Thanks again

irishrambling
Posted by

I was told that I had to have gamma knife for my brain mets before I could start immunotherapy. I had them done and started immunotherapy on Thursday. My brain is much better. It's clear to me that some of the stuff I'd had and which had been put down to stress because of my husband's situation was actually caused by brain mets. So had clearly been there sometime. I'd ssy at least 3 years. 

I saw the brain surgeon at 4 pm on Monday and had the treatment the next day because they had a cancellation. I was treated at Sheffield and couldn't fault it. The follow up has also been fantastic. 

Though I'm tired from the immunotherapy today I've been for a 40 minute walk, then out for Christmas shopping and some lunch. Sawn up some logs and emptied and refilled washing machine. I couldn't have done any of this 4 weeks ago. The friend who took me to the brain surgery appointment said she couldn't believe it the next time she saw me. This has been a general comment by friends. 

scotabroad
Posted by

Hi Iris

Thank you so much for sharing and I am so happy to hear about your improvements.

My mum is in Aberdeen and we are just waiting hear from the hospital on the diagnosis after the biopsy's, etc 

I have passed on the info Gragon shared to my mum to see if that speeds the process up

Fingers crossed

buttercup01
Posted by

Hi , I had cyberknife in 2013 then started on Pazopanib 600mg a day to keep anything else at bay. (I had lung mets for years which they were just keeping an eye on till I had the brain tumour.) Having had a 3 .5  year treatment gap from 2016, I've only recently gone back on the meds as I've developed a fresh lesion elsewhere.

Alll all in , pretty good going.

Btw, you might want to also join the Brain, secondary cancer and Family and friends groups.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
scotabroad
Posted by

Hi Buttercup

Thanks for your comment and we have just found out she has her appointment at the hospital on Tuesday.

Cannot be there for her on Tuesday but we have just booked flights to head back to the UK for New year and I am going to stay a bit longer to help my parents out around the house, cooking, cleaning, etc

Need to do something

buttercup01
Posted by

Fingers crossed for your mum today

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
scotabroad
Posted by

Thanks Buttercup

buttercup01
Posted by

How did your mum get on today ?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
scotabroad
Posted by

Hi Buttercup

Unfortunately  nothing discussed about treatment or if they think it is treatable as she was feeling exhausted and nausea again as they had been dropping her meds - so back to square one, at least thats how it feels.

From what I can figure out is they have increased her meds back to the same as 3 weeks ago when they discovered the cancers, which I think is steroids to help reduce the swelling from the Mets in her brain and have made another appointment on the 3rd January - when hopefully we can get some more info.

I will be back in Scotland then so will ask my mum if she minds me coming with her to the appointment

Just waiting for letter from Macmillan as the cancer nurse said they had been trying to contact my mum but knowing my mum would have had her phone switched off,  so my dad will arrange for some help now as he is not in the best of health as well

So an emotional daay for all but hoping the meds help her enjoy the festive period a bit more and my daughters pick her up  little as well when we visit.

Gragon
Posted by

Thank you for letting us know how your mum is getting on .  Hopefully things will settle down a bit and you can help sort things out when you get there.

All the best,

Gragon x

buttercup01
Posted by

Yes  the steroids will help your mum's nausea due to her brain mets and that in turn will enable her to enjoy thingsa bit more, as you say 

I hope she agrees to your going with her to the appointment on 3 Jan.

Meanwhile, make the most of your family visit xx

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
scotabroad
Posted by

Hi Folks

Hope I find you well but was wondering if you could help me answer another question about my mums care as we are getting confused as to who is responsible for what.

Are the Oncologist and Cancer nurse the primary care givers we should be talking to regarding symptoms and medication or my mums GP.

The reason I ask is the Oncologist increased my my mums meds to help alleviate the symptoms she was suffering 2 days ago, but when the GP visited yesterday her tried to reduce them again already and my mum is scared that this will lead to her feeling worse and not well enough for the treatment consultation on the 2nd January.

Just feels as if there is no communication between hospital and GP surgery.

Hopefully get a Macmillan nurse in to help explain this and point us out to get some social care for my mum around the house.

Thanks

catnursey
Posted by

Good afternoon.

The Oncology team and CNS will initially lead in symptom management. Letters from the hospital can take a while to be received.

Your CNS can help.bridge the gap between the two.

Hope this helps.