Diagnosis Bombshell

Good Morning Caroline.  In Nov 2021 age 52 I was similarly advised I had advanced kidney cancer, spread to the lungs.  I was referred to oncology and a biopsy booked in.  I started immunotherapy in Jan 2022 (ipilimumab / nivolumab) and to cut a long story short, my lung mets are no longer visible and the primary now half it's previous size at 2.6cm.   

I asked my urologist "how long have I got?".   5 years was the reply, same timespan from Oncology, a month later.  But I won't be asking for a prognosis again, because it's just estimated guesswork.  The stats are all 5+ years out-of-date (a medical trial takes 5 years) and the treatment options are ever evolving.  A prognosis at this stage doesn't take into account how your body will respond to the treatment.  I get on fabulously with my oncologists and I ask lots of questions, which they are happy to answer.  I read the room and I judge for myself how it's going and likely future projections.  My onco is delighted with my response but I just see it as the treatment is doing what it's supposed to do.  

I felt lethargic in the months prior to my diagnosis.  Once the treatment started I felt normal again, albeit a blip for an immune related adverse event.  

Your positives are your age.  A biopsy and a meeting with oncology a week later was the timescales for me.  At the oncology meeting you can choose a treatment plan - they'll probably give you a few options and possibly 3 weeks later you could start.  This is what happened to me.   This is the worst time, with the waiting and the treatment to be decided.  Yes you will be thinking about it constantly at the moment but once you start your treatment people generally find you get into the swing of it and the anxiety is less. 

Happy to chat any time.  Also, loads of people on here to support.   

Thank you Mmum for your reply. Really appreciate hearing from someone who has been given a similar diagnosis and your experience since then.  X

I blog my experiences here btw.  There's one on the biopsy, and another on the first oncology meeting and another on choosing my treatment.  Has upbeat sections and sweary words at the low point!  

Hi Carolinem.

Sorry I haven’t commented earlier but I can see that Mumm has already replied to you with some words of understanding at what is the the hardest time in your diagnosis. The waiting for the initial plan. We all go through the shock panic stage but it does get easier. 
I was 54 when diagnosed. That was 14 and a half years ago. At that stage there was no indication that there had been spread from the primary site but the mass was significant and I had a radical nephrectomy of the right kidney. It was just over 4 years later that scans showed spread to thoracic lymph nodes and both lungs.

Since then I have been through various treatment regimes to control the spread and advancement of the disease. Some with more success than others some with less side effects than others.

There is no way I can tell you that your journey will follow the same course but what I can say with some considerable experience, is that there have been great strides made in treatment development over the years since my first diagnosis and once you get through these early days and once you start with what ever your treatment plan will be, you will settle into a routine.
Unlike Mumm I have found the relationship with my oncology nurse invaluable . Luck of the draw I guess. She has always been there  offering practical help and explanation of the medical stuff from the oncologist.So keep an open mind in that respect.
You haven’t said how your daughter is coping with the situation? and I would certainly suggest you talk to Macmillan for help and advice in that regard.

Good luck and let us know how things go. I’ll be thinking about you. 

Thank you for this message. My head is a mess right now. I was referred to urology due to.a 5cm renal mass on my right kidney. After CT scans MRI and biopsies I was told I have kidney cancer which has spread to my adrenal gland, lungs and lymph nodes.. 

Reading your message gives me hope. I'm meeting my oncologist next week hopefully to discuss a treatment plan. I'm only 46 and reasonably fit.. so this is a massive shock. 

Trying to stay positive but it's difficult. I'll take a look at your blog.

Thank you

Phil