Ragged Clown

It's just a shadow you're seeing that he's chasing…


Jun
21
2022

Good news can be unsettling too

We went to see a new oncologist yesterday.

I had requested a second opinion from someone who was specifically NOT a surgeon on the grounds that surgeons are predisposed to recommend surgery (just like car salesmen are predisposed to recommend that you buy a car). The surgeon seemed offended.

“NOT a surgeon, eh?”.

He raised an eyebrow. Oh, well.

We were expecting to see Dr XY (a rather stern-looking male doctor when we stalked him online) but when the door opened, we were greeted by a smiling Dr XX. We were not used to smiles from doctors in recent weeks and they caught us by surprise.

Dr XX started by asking about my anti-seizure medication. I told her it was making no difference and was giving me unpleasant side effects. I told her that, from my research, what I was experiencing didn’t sound like a seizure anyway — though 3 nurses and a neurosurgeon disagree with me.

“Hmmm…” she said. “It doesn’t sound like a seizure to me either. I’ll book you an appointment with the head of epilepsy. He is an expert in brain tumour-related epilepsy (BTRE). He’ll know. He’ll probably do an EEG.” (Mrs Clown has been asking for an EEG for weeks).

Score One Point for Dr XX.

Dr XX next started to talk about scans and tumours. I paused her and suggested that, instead, I tell her what I know and what I think we should do and then ask her my questions. No point in her telling me what I already know. “Sounds like a great idea!” she smiled.

Score Two Points for Dr XX.

(paraphrasing) I have a diffuse low-grade glioma in three lobes etc etc etc. Prospects for surgery are bleak and I don’t think I want it. Radiation is not possible. Chemo requires a molecular profile which will require a biopsy. The data on PCV if I have the 1p19q codeletion looks promising.

My question: is the chemo likely to do any good? If not, there’s no point in even doing the biopsy.

Smiling Dr XX (paraphrasing again):

You described your condition exactly as I would have. I have nothing to add and your suggested treatment path is exactly what I was going to recommend. I think surgery would be a bad idea for you and radiation is not possible. 

The biopsy is easy and low risk. No reason not to do it (and you seem like the kind of person who prefers to have more information rather than less). PCV is usually given as an adjuvant therapy after surgery. There is no clinical data on using it without surgery but a healthy young man like you should be able to tolerate it and, if you have the codeletion, I think the chemo will be helpful. If you don’t have the codeletion but have the methylated MGMT you might consider TMZ. If not, you will have lost nothing but will have more information about what to expect.

If you like, I can present this to the multi-disciplinary team and see what they say.

“Please do!”, I said.

Score Three Hundred Points to Dr XX and Gryffindor.

I asked about the other side.

What should I expect if I have no treatment at all?

Your glioma seems to be very slow growing and might have been there for years. It might be there for years to come. It’s almost certainly grade 2 now. It might transform to grade 3 and then it will grow much faster. People with your kind of glioma usually just find themselves gradually slowing down and finding cognitive functions harder to deal with. You might have trouble with speech.

Eventually you’ll find yourself getting sleepier…

…and, eventually, I’ll go to sleep and not wake up?

Exactly!

What a lovely way to go!

Dr XX said she had been careful not to sound too optimistic and I promised that I wouldn’t come back to haunt her if she got it wrong. As we were leaving, we told Dr XX that she was wonderful and that we would rate her Five Stars on Yelp (“…and TripAdvisor!” said Mrs Clown).

We are gonna need a bigger boat!

We walked home on sunshine and talked about what this new information meant.

Though nothing has really changed, this new way of looking at things certainly turns everything upside down. Maybe I’ll have time to finish my degree? Maybe I shouldn’t quit my job? Maybe I’ll outlive my term life insurance. Maybe we should make plans for a smaller mortgage. I’d like to let the information settle for a bit before I make up my mind. I have time to think now.

I spoke to K last night to see what she thinks. K reminded me that I said the last couple of months have been among the best of my life. She told me I should just keep doing that stuff. Maybe I will.

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20 responses to Good news can be unsettling too

Robin Martinez June 21, 2022

Hoorah for a doctor with a new attitude, who listens and HEARS. Keep living your best life and enjoy every moment of it. Love to you and yours!

Janet June 21, 2022

Finding a doc who’s A Good Fit is more than half the proverbial battle imo. Great report, thanks for sharing.

    Ragged Clown July 5, 2022

    I don’t know how this works in America but, in the NHS, the neurosurgeon is the gatekeeper for everything brain tumour related until you have a biopsy. Other physicians won’t even see you until you have a diagnosis confirmed by biopsy. I had to work very hard to get to see Dr XX.

    I’m still not 100% sold on the idea of a biopsy but the idea that having a proper diagnosis will let me escape the clutches of the neurosurgery department into the welcoming arms of the oncology department is a good argument in favour!

Graham June 21, 2022

Dealing with “Good News” is probably harder than dealing with the opposite. It opens up all sorts of opportunities – decisions, decisions. At least you have everything in place for planning your exit which you can leave alone and not dwell on it.
You probably will now have to fit in planning for “Old Age” sometime in the future.
I did have a good work friend who overly thought about all his health problems for a good 20 years and I try to use him as a model of whom I must not be like 🙂
Looking forward now to hearing of new life plans.

    Ragged Clown July 5, 2022

    Life suddenly got very complex with this new outlook and quickly filled with trouble and strife. Maybe there is a plan for a new life out there somewhere but we haven’t found it yet.

    One step at a time.

Claire ATX June 21, 2022

This good news today reflects your unflagging intelligence and relentless exploration to find the best life when faced with an overwhelming obstacle. Well done!

Georgina June 21, 2022

The difference was night and day between the doctors. One was doom and gloom, the other sunshine and flowers. Thank you Robin. If this has taught us anything it is to enjoy and appreciate every minute

Gilles Frydman June 22, 2022

I much prefer the uncertainty of hope she presented than the certitude of dread the surgeon seems to have given you.

A big hurray for a good listening doctor. These are always the best docs we can find since it’s your body and your choice in the end and you are the only one who really can decide which path you are most comfortable following in dealing with any serious disease.

Nick Warren June 22, 2022

How uplifting. I hope the future is bright and that you continue to inform with your interesting blog. I’ll continue to tune in.

Rosa May June 22, 2022

You found a bigger joy in living, keep it up. And possibly write a book..your chances of finishing it have increased and I just love the way you write… I know others would too x

Melody Skinner June 23, 2022

We are used to planning for the future, finishing school, paying a mortgage, planning for our retirement, etc. Then a cancer diagnosis smacks us into the reality that we will die and it may come earlier than we ever thought. All of our priorities change, we wonder if we will make it to retirement, what will happen to others when we die, what should we do to prepare? We have a new direction that we did not expect. The entirety of cancer overwhelms us and affects all aspects of our life. We start learning to live in the now. Somewhere along this path a glimmer of hope is offered, yes this can be a chronic disease. Does this mean we can start planning for a future again? A different future, one that offers us the chance for hope of better days with cancer? We find we have a reprieve and need to find ways to fill our good days with actually living life today. We reach to fill that time well. Any day above ground is a good day. We find some peace. I look forward to hearing what joy you will find.

Emeline June 24, 2022

While the idea of losing cognitive function is incredibly scary to me, eventually falling asleep and never waking up is certainly the best way to die. And to have a doctor who is listening and responsive- what a difference! I’m glad you have been able to meet with someone who you have been able to click with in terms of your care.

Charlotte Jensen June 24, 2022

Kevin, Sounds like a thorough appointment with clearly thought-out options plus a tumor board to add in their thoughts. I will be praying for the right path forward.

Charlotte/CA

Diana Beaumont July 4, 2022

Kevin, I’m so happy, not only to discover this “blog site”, but overwhelmingly pleased to see your post about the new sunshine & flowers doctor who listens and cares! My wish is that you’ve been able to exhale and see your hope horizon rising higher now. Add to that your practical, logical mind, and a good life is yours for the making. Even completing your degree and doing some writing loom large as possibilities! I”m sending you big hugs, Sleuth Diana

Tami Wilson July 4, 2022

Finding a Dr that listens is one thing, but finding one who hears you is another. Seems you found one who is a good fit. Keep us posted but I like the multidisciplinary team review happening.

Blessings, Tami

Ragged Clown July 5, 2022

Thanks everyone for your good wishes and encouragement.

A small coda:

The multi-disciplinary team confirmed my request for a biopsy and the next step is to see the surgeon to talk through the risks and logistics. I’m still not completely convinced that it’s the right thing to do but I’m leaning that way.

Norma Jean Galiher July 8, 2022

Hi Kevin,
Most of us are not completely convinced that something we’ve been forced to choose, in a decision making situation we didn’t want to be in, is the right thing to do, so I understand and imagine many others do, too. Too many times in life I’ve found myself at a crossroads and paused for variable lengths of time (9 yr. in the case of an obviously bad marriage I was reluctant to declare dead), as did Rbt. Frost, but something in life always eventually comes up behind me with an electric cow prod and zaps me out of my foot-dragging indecision, down one fork of the road or the other. It’s one of the toughest things about finding oneself on this plane of physical existence, not being able to see clearly down both forks of the road before choosing one and launching forth.

May The Force be with you in choosing. Lots of your friends out here in the ether are with you, too…

NJ in CA

    Ragged Clown July 8, 2022

    There is a very good episode of Doctor Who that examines this idea of being able to see the consequences of your choices. Early in the episode, the Doctor’s assistant has to choose whether to turn left or right then, later, she gets to rerun the scenario and make a different choice. In the second timeline, everything changes with dramatic consequences. It’s my favourite episode of Doctor Who and I think of it often.

    What would my life have been like if I had gone to Cambridge instead of leaving school at 16? What will happen if I choose the biopsy and chemo? What if I don’t? What if I got to try both timelines and then chose the one that works out best?

Lucie Johnson July 16, 2022

Best wishes in your current decision process. May you and your care team be both wise and lucky!
We can make reasonable choices, but certainty is never in the cards.
I am cheering for you (as is everyone here)!
I agree, even good news can be hard because one has to restructure one’s possibilities, and deal with more unknown elements. Very best wishes! Lucie

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