New diagnosis

Hi Kate,

I've had a kidney cancer diagnosis in the last couple of weeks too, but in my case it's spread to the lungs already so I'm incurable.

My understanding from my reading on the subject is that if kidney removal is an option (it's not in my case) then that is a positive sign.

37 is very young (I'm 52), so that is another positive, assuming you're fit and healthy otherwise.

Good luck,

Stuart.

PS. I'm surprised that your CT scan result is taking time, mine were available within an hour or so.

Hi,

thank you for taking the time to reply. I’m so sorry to hear of your diagnosis. 52 is very young too. 

I think the wait for the CT scan results is the time it takes for the consultant to have his clinic- rather than the availability of the results. But it’s all new to me so I don’t really know. 

I imagine your head is all over the place - I hope you have a good support network. 

wishing you the best,

Kate

I'm alright Kate, thanks, it's the family that struggle, but at least my kids are grown up and independent now.

As I'm probably about a week ahead of you, I'll tell you how it went with me.

After my second CT scan with dye, the urology consultant spoke to me and told me the diagnosis. I then had to wait just under a week for them to have their weekly MDT (multi disciplinary team) meeting at the hospital, where all the various medical professionals discuss the cases. The urology nurse called me after the MDT meeting and said I'd need a biopsy to identlfy the type of cancer it is. They suspect RCC but need to confirm (by the way, RCC is the most common type, with the most treatment options available). I had the biopsy on Tuesday this week, just as a day patient. The procedure took 20 minutes but then they made me lay in bed for about 5 hours. The biopsy results apparently take 1-2 weeks, and I expect a referral to an Oncologist once they're through.

Keep your chin up. It seems to me that there are lots of targeted treatments that are very effective.

You take care.

Stuart.

Hi

Thank you for taking the time to reply. It’s really helpful to hear from people who have been through a similar experience (although I wouldn’t wish this situation on anyone).

Like many people, it’s the uncertainty that’s very difficult to deal with. I’m scared for the future of my children. 

I am trying to be upbeat. I am fit and otherwise healthy- I run several times a week and do gym-type exercises at home. I’m not overweight and I eat a healthy diet. It should count in my favour- but I am still afraid. 

I think I am scared the cancer has been discovered late or has spread - I don’t have a basis to think that other than general fear of the worst. 

I think what you say about having a plan/thinking logically is right.  I will try not to worry until I know a bit more.

i hope you (and your mum!) are well and I wish you all the best for the future.

thank you again for being so kind.

Kate

I was the same age as you when first diagnosed,. I had no symptoms and didn't find out until shortly after having my second child. I was shocked when shown the size, but after treatment, and two more operatiions, I am still here 18 years later. I am currently on targeted chemo, but all my checkups have been positive, and I hope to be here for many more years.

It was a surprise to have another child 4 years later, but a blessing. Treatments have advanced, and still are doing.  

I was given contacts in the Urology nursing team if I wanted to talk, and they were brilliant. 

I was diagnosed with brain tumour with fluid on Wednesday after ct and mri scans got told today after full body ct scan it’s secondary brain cancer there’s a tumour on right kidneys didn’t have any symptoms been told oncology should be in touch within a week just wondering what happens next

Hello sylvfair65,

Sorry to hear about your diagnosis but welcome to the group.

The oncologist will obviously be treating all of your cancer and as such you might end up with more than one treatment.  As discussed in the thread above the oncologist will want to know which type of kidney cancer you have in order to determine what treatments might be appropriate.  Did the scan reveal any other tumours other than the kidney cancer and the secondary in the brain? 

As the cancer has already spread they may decide not to remove the kidney cancer but treat using one of the other treatment options.  With RCC this may be a targeted biological therapy or immunotherapy.  As the cancer has already spread this will also be used to manage any other secondary tumours.

I have no personal experience of secondary brain tumours but understand from talking to other people on the forum that they are often treated differently to other secondary tumours.  I believe that this is because there are some issues with trying to get drugs to cross from the rest of the body to the brain but I'm sure your oncologist will be able to advise you about this.  If you click here  this will take you to the information page regarding secondary brain cancer.  You might want to try joining the Secondary brain cancer group to get more information from them.  If you click on this link here it will take you to that group. 

I'm sorry that I can't offer more information but as I said to earlier it becomes clearer once you have talked to your oncologist, the investigations are completed and your choices are made available to you.

Please come back to us if you have any more questions or even if you just want to talk.

Wishing you all the best,

Gragon x

Hi,

Thank you. That is so good to hear. And congratulations on child number 3 as well!

i have 3 boys- so they are keeping me busy during this waiting period. 

thank you for your story. I’ve also got the contacts in the urology department and they have been very helpful so far. 

Hi,

I'm 39 and was diagnosed with cancer in my left kidney on June 2nd after finding a lump in my testicle. I did a bit of research before my ultrasound and found it could mean I had a blockage in my kidney. At my ultrasound a small lump was found in my left testicle which the doctors said would be fine and I could go. I then asked if they would scan my kidneys as I was concerned. This is when she found the lump and I was rushed straight away to have a CT scan with dye. An hour later I had a phone call from my GP, so I knew the news was not great after going through something similar when my mum was diagnosed with breast cancer years ago. After seeing the specialist a few weeks later they said the cancer had not spread anywhere, but was quite large being just under half of the kidney. They said I was very lucky I said to get the kidney scanned. After a chat we have decided to have the whole kidney taken out via key-whole and not just half. My bloods and all tests before op have been great. My operation is on the 27th of August. I am trying to remain positive, but my body is aching all over and I cannot help but think it has spread, even though I was told they normally grow slowly. My family and two children 12 and 10 have been great.  The wait for the operation date has been hard due to Covid effecting how much operating time the surgeon has. Wishing everyone all the best. XX