Whirlwind few months and radical nephrectomy

Hi Daisy294 , our stories are similar in many ways.  My tumour was removed 7 years ago when I had radical nephrectomy.  At the time, I was told it was an aggressive cancer but the surgery had been successful with no signs of spread.  I wasn't offered any follow up treatment and I didn't push for it.  With the sharp vision of hindsight, I regret that a bit now.  Three years ago, I was diagnosed with a metastases in my brain stem.  This wasn't picked up in any scans as my head wasn't included.  I'm told it is very unusual (I wonder how many of us get told our cases are highly unusual?). 

Since the discovery of the brain tumour, I have had various treatments, including immunotherapy.  And some of the treatment is rough.  Main thing is fatigue, most things leave me knackered.  Glad I've had the treatment, and am still receiving, treatment though.  I'm still here, with holidays and family events to look forward to.

No advice here, sorry.  Just my story and my best wishes whichever way you go.

Hi SandyN,

I am glad you are still here. Sharing your experience has given me hope. My sister had a partial nephrectomy in 2024 and has now completed her immunotherapy. She struggled with the fatigue and other side effects. The thought of this returning scares me but im really worried about the side effects of the immunotherapy.  It has all happened so quickly and I do not think I have processed any of it properly. Its been surreal.  I am having my ct scan on monday so after that I think I will be able to make a better decision.  Please keep in touch and let me know how you are doing.  Take care. 

Hiya daisy nice to meet u.i like Sandy had a chance of immunotherapy but I was told many years ago a had auto immune disease..so tge therapy was now allowed ...turns out I didn't, but a year wasted in looking into it, now the beggars have been noted in one adrenal gland and both lungs.

I am now on targeted therapy been on my first 3 courses big scan tomorrow to see if it's working.

In hindsight I think I would have tried, but hey ho...

Have another talk with oncologist, pros cons. Tbh they are wonderful,  at my hospital lots of support.

Wishing u luck and love.

Hi 

personally speaking I would in retrospect opt for the immunotherapy. I had a radical nephrectomy in 2020 I was never offered immunotherapy I wasn’t even made aware of it so there must be certain criteria that I didn’t meet. I had annual scans and was very pleased the cancer hadn’t returned. I was approaching the year 5 of monitoring and I had annual scans. I had to have an unrelated ultrasound  and there it was right kidney had cancer and on reviewing the scans of the two previous years it was visible and not reacted to or missed. I have since second diagnosis had cyro ablation which didn’t get it all and had my second round this week. And I’m functioning on half a working kidney which is doing well. But I wonder if immunotherapy had been offered would I have avoided the second cancer or if the scans had been looked at properly my current situation could have had better outcomes. 
the reality is I will never know and glad to still have my half working as good as it is :) 

don’t know if this tale of woe helps but it’s something to consider 

I wish you good healing and positive thoughts 

Pembro as an adjuvant treatment only became a standard offerring about late 2022, if I remember correctly.  Kidney cancer was behind many other cancer types in its offering of an adjuvant treatment.   

I had immunotherapy (not pembro) between 2022 - 2024 with good outcomes, but for metasized RCC.  I remember reading all the pros and cons on the treatment info.  It's any wonder anyone choses immunotherapy after reading that!  They have to tell you all the side effects that may occur above a certain probability.  But no one gets them all, so it just sounds horrendous.  

Immunotherapy is not a miracle treatment.  I got some itching as a side effect, and then niggly things like a dry mouth, nasal congestion.  But also immune related adverse events.  My kidney function is now impacted although it doesn't impact me, it just matches levels of people 30+ years older.  

Oh my. Your situation is a mirror image of me. I thought I had kidney stones and went A and E after advice from my GP following a urine sample I requested them to send. The urine sample 'ACR' return was highly abnormal and not in keeping with Kidney stones. This all started mid September with blood in urine, lower back pain with my A and E visit end of October follow urine result. Fast forward to a Full R radical December 8th. Like you ccRcc Pt3a R0. They ideally like immuntherapy to start within 3 months of surgery. I have my CT scan on Sunday and oncology 10th Feb. These appointments followed my Urology follow up on 13th January. I have also been informed I have a very small lesion noted on my R lung which at present is less than 3mm so fingers crossed CT shows it not grown and remined the same...

I just wanted to share as your own experience was like reading my own story too. And give you an idea of my own time frame between appointments and surgery. 

Hi I got the same pathology report as you, stage 3, PT3a, 5 yrs ago, I’m 54 now and female, was offered no treatment just removal, found by accident, they are keeping a eye on a nodule in my adrenal gland which hasn’t changed in 5 years, I’m due a scan in a few weeks, always get worried… but just letting you know that I’m still doing good no reoccurrence yet good luck on your journey, what ever you decide to do.. x

Hello. 

5 years and still going strong, sonhappy for you. Fingers crossed it shall continue. 

I am worried about the small lesion on my lung. However, reading some of the views and experiences of others as given me hope that things can improve and the treatment when it works does a great job. Everything else on my past scans have been clear and no sign of disease anywhere else. Which is a promising sign. CT scan due soon and then speak with oncology who I hope with offer the immunotherapy. Thank you for sharing and giving me hope. All the best too x

Hi Jammie, your very welcome, good luck on your journey, hope all goes well x

I had my follow up scan Wednesday. Now waiting for results on the 10th with my oncologist. So fingers are crossed and toes to, my scan is the same and no new changes.