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Kidney cancer

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

What questions should I ask?

Study To Be Quiet
Posted by

Hello everyone. Everything has happened very quickly: 12May I contacted GP by email as I has some blood in my pee. Next day he replied arranging cystoscopy in the local hospital. That showed no abnormalities. Then came a CT scan of my abdomen. A phone call from a nurse specialist informed me that there was a growth in one kidney, they had had a multidisciplinary team meeting and wanted a chest scan to check no spread and that the current thinking was kidney removal. Yesterday I had the CT scan of my chest. The day after tomorrow the Urology consultant is phoning me at home. Any advice, please about what I need to know and what questions to ask? 

Joncol
Posted by

Hi

before I met my consultant I Wrote down the following questions

1. Was the tumour cancerous?

2. if yes what type of kidney cancer

3. what stage? Has it spread?

4. What grade?

5. How often would I get follow up scans?

6. The name of the clinical nurse specialist that I could contact if I had any concerns.

 7. The likelihood of a recurrence?

hope this helps 

Jane
Joncol
Posted by

Sorry just reread your comment and my questions were for after removal so ....

1. How large is the tumour?

2. How will it be removed e.g. keyhole?

3. will the whole kidney be removed or part of it?

4. Did the ct show any spread?

5.if it did show spread what will be the follow up treatment?

Jane
buttercup01
Posted by

Hi

Ask about  -

what op  you'll b having  ie a,radical nephrectomy, a laparascopic one, one done robotically.

- what the results of the CT scan were, ie has it spread?

If so, where to?

- will it be,followed up by drug treatment? If so, what drugs?

Make sure u have pen n paper by the phone to write down the answers.

There are bound to b other things but that's what immediately springs to mind 

Good luck !

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

Thank you for your reply and for replying so quickly. 

Study To Be Quiet
Posted by

Thank you both for your help. Your suggestions were really useful. Just had the phone call and it is a 7 cm lump and they intend to do a laparoscopic whole kidney removal. He said this should happen within the next 4 weeks. The CT scan did not show anything so it’s fingers crossed now. 

Joncol
Posted by

So glad to have helped. Once I knew what was going to happen I was far less anxious. I too had a 7cm tumour and had the whole kidney removed laparoscopically. I was 64 at diagnosis and in the four weeks until I had the operation I made sure that I was as fit as I could Possibly be. I ate healthily and walked miles. The operation went smoothly and I was back at work after seven weeks as a teacher. If you need any information about the operation let me know. I wanted to know everything but I know for some people ignorance is bliss!

Jane
Study To Be Quiet
Posted by

I am still anxious but, as you so rightly say, less so than before the phone call. I am in my sixties, and over weight but doing my best to use this time wisely, eating healthily and buildIng up my stamina by walking yet keeping well away from other people. Like you I prefer to learn everything I can so I’d be grateful for anything you can tell me and any advice. Maybe it’s the teacher in us: we do like to research a topic! 

Joncol
Posted by

You’re absolutely right it must be the teacher in us!! The operation I was told many a time is major but doable. After the op I was in intensive care for one night and then moved to a ward for a second night. I then went home. The pain was really well managed in hospital and when I got home regular paracetamol helped as did walking. To start it was a slug like walk but by two weeks I was walking normally. The first few days home it was difficult to sit up and get out of bed. I was told to use a pillow and push against the largest wound to prevent a hernia. You must drink lots to encourage the remaining kidney to do extra work. I was also told to cut down on protein as it is processed through the kidneys. After two weeks I saw the consultant urologist for results and the tumour ended up being only 4 cm not the 7cm originally thought. 18 months on I am really well and being monitored every six months for five years with a ct scan. So far so good!
it was such a relief to get the tumour removed that I welcomed the operation and couldn’t wait to have it done. Please ask any questions you need to.

Jane
buttercup01
Posted by

Librarians also research a topic of course  and 

How did u get on with your phone consultation ?

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

You are right about Librarians, of course and there are probably lots of other people who seek out reputable sources of information to find out as much as they can. I do feel better when I am prepared. 

I was glad it was a phone consultation because it meant my husband could be with me. Thank you for asking.

The doctor was very good and answered all my questions. We wrote down what he said so we would remember the key points. The big relief was that the chest scan appeared to be clear, although nothing can be guaranteed. I was also worried about delays in treatment but he seemed confident that the operation would occur within the four week window, probably in the nearby private hospital unless the pre-assessment suggests possible problems. 

I had epithelial cancer of the uterus back in 2005, by the way, and had my uterus and ovaries removed, so there is the possibility that this  is linked. I am now thinking about what it would be useful to take in to hospital, based on that previous experience but it seems like a very long time ago and a bit blurry in my memory...

buttercup01
Posted by

Glad the phone consultation went well n that your op won't b long off.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Ania24dab
Posted by

Hi Jane I had same size 4cm tumor removed it was 1 stage pT1a I’m new with that can you tell me if that’s a good thing and what’s that mean

buttercup01
Posted by

Hi see questions above from

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

Hi Ania

that is good news! Stage 1 means the tumour hasn’t spread and was confined to the kidney. PT means pathology Have stated that the tumour was 7cms or less. There are sometimes two other letters N0 which means no nodes involved and M0 which means no spread. You will probably be scanned every six months for five years. This is called active surveillance. I hope this answers your question and that you are making a good recovery after your operation 

Jane