Hello Oncology - 21st December 2021

Tuesday 21st December is the important date I meet my oncology team.  I’m desperate to build a good trusting relationship with my consultant.  

I have huge expectations for this meeting for obvious reasons.  Add in the waiting time, anticipation and excitement that the milestone is finally here.  Yay!  But it doesn’t start well.  The appointment is not started on time (+20mins overdue) and when I raise my concerns over this, I'm advised the appointment is not with the consultant named in the letter.  I have an unfortunate exchange with the “support” being too in-your-face and heavy handed.   

I’m rattled before we start and this is the most important first meeting between me and the most important consultant going forwards.  

We start with introductions and explanations of how the nhs booking process works.  Why the letter invites me for a meeting with Dr Blah and the first thing I learn is my appointment is with A, a Registrar, and my named consultant is S.  Clear?  No, not really.   I realise the NHS must have worked like this for years but for me, it’s confusing, lacks clarity and transparency.   I feel they’ve told me X and implemented Y which is not conducive to building trust.  There is clearly a Plan behind the scenes and I have been allocated a team so I don’t see why my named consultant isn’t on the Letter.   It would be accurate, transparent and consistent.   I've prepared for this meeting by finding out about the Drs interests, research and specialism and this is all negated now.  

I start by outlining how I envisage our relationship working.  I want Oncology to advise me on medical options, pros and cons, explanations etc and I can take informed decisions on the way forwards.  A is in agreement, that I’m Captain of my ship with a crew of specialists onboard.    After the cr@p I’ve experienced, with “support” looking like “here is a shoulder to cry on” (no thanks), “let us help you cope” (not necessary)  or a belief that my diagnosis is permission to ask about my emotional state (nope), this is music to my ears and we are now getting somewhere. 

I get my biopsy results.  I have clear cell renal cell carcinoma.  It’s the kidney cancer 70% of people have.  Only weeks later I appreciate the significance – that trials and treatment options are far more numerous for common cancers.  It means there are more treatment options and likely that the research is more advanced than rare cancers. 

We cut-to-the-chase and talk about our main objective – how to keep me alive for as long as possible.  I advise I have been looking online and there’s three combination immunotherapy approaches I like the look of.    I’m on the right page and these drugs are popular treatment options at the moment.  My options are broken down into:

1/ Pembro/Axinitinib – effective on 60% of patients but the treatment options when it stops working are fewer.   A describes it as using most of your Arsenal immediately.  I’m pretty sure straight away that this isn’t the drug for me. 

2/ Ipilimumab / nivolumab – effective on 40% of patients.  A tells me there is a lot of data on this treatment.  It was one of the combo drugs on my list.  **LIKE**.  

3/ Watch and wait.   Do Nothing. *Raised eye brows*.  I am at a loss to understand the logic for this.  Dr A advises there is a school of thought that because immunotherapy treatment will stop working at some point, then waiting longer to start the treatment may prolong survival.  SOD THAT.  This option is immediately binned.    I am conscious of how I feel at the moment.  I have an unhealthy issue which impacts my life expectancy.  I can’t wait to start my attack on the unwelcome visitors in my body.  And one approach is . . . . . . “wait”?  Wait until my next scan in 3 months time in this state of mind?  No way.  Not sustainable. 

4/ Nephrectomy.  Hey, no, what?!  Mr C, my Urologist already advised that with metastatic RCC (what I have), the treatment approach is to control the cancer rather than a cure.  It’s too late once it’s spread to another organ.  Dr A explains that we can over-ride that, if we want.  “Get rid of the engine (source)?” I suggest.   I am not convinced.   I have only met my Urologist once, but I warmed to him immediately.  I was impressed with his people skills, and the respectful way he managed a difficult conversation.  I have no reason to over-ride his professional opinion.  I have seen one Kidney cancer.  I may have a deep personal relationship with the one I have seen, but he has seen a few more and he is a specialist in his field.   

5/ Trial.  What’s available?   I ask about a trial I have seen (all drug trials are freely available to look up online).   Dr A tells me about a trial Dr S is leading.  Dr S is summoned and we now talk about this 4 arm trial, with 3 combo-immunotherapy drugs and a control arm.  We think it's the same trial. I am given all the information to read up on.  Pros:  potentially 3 lines of attack, cons: higher risk of side effects.  This is so interesting.  GET IN. 

But hang on, why not take the kidney out and start the drugs?   Not allowed under the drug licensing rules because a nephrectomy is a treatment.  I have to wait for a return of the cancer, or continued growth to start another treatment.  Oh.  Now I start to get it. 

Dr A tells me there’s no rush and I can have a few weeks to think about it if I want.  I don’t know where she gets the justification for this.  The fact that kidney cancers are notoriously slow growing or whether there is a pathological reason.  I advise this won't be necessary.  I just need to think about it overnight, read the info, and then I'll make a decision tomorrow.    

I’m offered the chance to talk to the nurses about the trial, but I am tired and I’ve had enough.  I just want to go home and absorb all the reading I’ve been given and think about the two options I’ve narrowed it down to.   I can start in Jan for the ipi/nivo and soon after for the trial (because there is more eligibility checking to undergo). 

I sign consent forms for both non-trial options so I don't have to return and we agree a follow-up phone call two days later.  

1 hour 30 mins after entering the room, I feel I have experienced a personal lesson in kidney cancer geekery.  My car meter will have expired and I hope there isn’t a ticket waiting for me.   I have been spoken to like an adult and treated with respect.  These guys have become by BFFs.   I walk out the hospital and text my husband “On my way home.  Awesome meeting”.

  • All I ever want is to be treated as someone with agency to absorb information, recommendations, and then take decisions. I am sick of the head to one side “and how are we today” types. Looking forward to hearing which route you took and how it’s going