Another new member

Im no expert, but the consultant told me that immunotherapy was preferred treatment if the cancer had spread. Reading other peoples experiences it does seem to be quite effective. Good luck with the operation, hopefully they’ll find that the cancer is contained.

Hi Phil, sounds like you have the start of a good plan and a team looking after you, all happening very quickly. I am 4 days post partial nephrectomy. I think with most kidney cancers they can only be 100% certain, firstly it is actually a cancer, my surgeon advised me 10% are benign and what grade, how aggressive it is and further treatment etc when they whip it out and they get the histology back. 

Its easier said than done because the waiting is the worst, but try and focus on what you know. You have a tumour but also a team of the top surgeons, anesthetics, nurses and specialists all looking after you with one aim to make you well. I feel like I've been hit by a train but I was in and out in 48 hours and a robot assisted my surgeons, amazing! 

This is the right place to get support and I wish you so very well phil. Take care Gosh. 

Hello PhilP, 

I've been on BP medication since around May when I had a heavy nose bleed. I've been wondering if there is a connection to the tumour on my right kidney. Surgeon says I may see my BP reduce. 

Hope all goes well for you. 

Kind regards,

Hey! I. newly diagnosed too! I have a 5x7 cm tumour in the upper pole of my right kidney. Recent tests have shown the bones and lymph nodes are clear thank god. 

I have a meeting with my surgeon early next month to discuss whether the surgery will be a partial it radical nephrectomy. I'm absolutely terrified however I just want it gone. As others have said, I have heard the chosen treatment post surgery is immunotherapy. 

Good luck with your surgery, hopefully I won't be too far behind you! sending you healing vibes ️ 

Hi PhilP,  so sorry to hear about your diagnosis.  I had a 7cm tumour on my right kidney. They removed the whole kidney which I was happy about as I wanted it out of my body.  There was no sign of any spread so really thankful for that. My op was on 17th Oct so I am now 8 weeks post op and recovering well.  Still a bit tired but that is to be expected , I’m 72.  My tumour was grade 2 with intermediate risk of returning and I have been offered immunotherapy.  Immunotherapy (mine is Pembo for short) is relatively new.  I start my therapy on 18th Dec .  I’d love to hear how others found Pemba.

wishing you all the best for your cancer journey.  Try to stay positive and take one day at a time.

Hello Southessexmum42,

I am sorry to hear you've had to join our club.

I had my operation to remove the whole kidney 2 weeks ago. Im in Wales and it was 4 weeks between seeing the surgeon and the operation. I hope it gives you comfort to know I'm well on my way to full recovery. The incision where the kidney was removed was very sore for 2 or 3 days, making it difficult to get up out of a chair or bed. I had some intestinal pain from wind, take some mints to hospital with you. Apart from this I was pretty much pain free. I was shown to hold a rolled up towel against the wound when coughing, this is a good tip for the first few days. 
I had my staples removed on Friday (9 days after op), my scars are nice and tight.

It is expected I will have the histology of the tumour before Christmas, as you know this will dictate the surveillance required going forward.

It was not the traumatic experience I had imagined, and not as painful as expected. I'm guessing it's not as bad as a cesarean section (but I wouldn't know!)

I was looked after by a team of wonderful NHS nurses and doctors for 2 days.

southessexmum42 I wish your experience is as good as mine and hope there will not be any need for you to have further treatment.  

sandysea, I am so sorry to hear your cancer was high grade, that must be difficult and worrying news to hear. It's great you are recovering well, I am too.

I hope the immunotherapy mops up any remaining cancer cells for you and no more surgery is necessary. Much love to you.

PhilP said:

I am worried that chemotherapy is not available for our condition.

Don't be worried!  Chemo and radiotherapy generally don't "work" for kidney cancer.  But if it hasn't spread to other organs, surgery is an option and since 2010-14 immunotherapy has been proven to yield good outcomes for kidney cancer.