The envelope please…

[Scott D]

Well, after posting just a few hours ago that I did not have any pathology results yet, I received notification that the report was available on my provincial health site.

Final Diagnosis
BLADDER, TRANSURETHRAL RESECTION:
— Papillary urothelial carcinoma, high grade, with lamina propria invasion.
— Sampled muscularis propria uninvolved.

So of course I had to do a deep dive on the internet to try and understand the report. Only trusted sites were used, Mayo Clinic, Cleveland Clinic and MyPathologyReport.ca.

From what I can gather, it could be worse. Looks like it’s just Stage 1 since the tumors were confined to just below the bladder lining (lamina propria invasion), and don’t go any deeper into the bladder wall (muscularis propria uninvolved).  The High Grade rating is a bit scary however.

I’ve attached a redacted copy of the report.

Will just have to wait for a better explanation from the doctor when we talk in the next couple of days.

 

[Scott D]

Here is page 2 of the report

[coliver52]

That is very good news indeed that it is not through the muscle. Though waiting for, and getting back, our pathology reports is always so nerve-wracking, I am so pleased for you that there is reason for optimism with your results. And with new trials always becoming available I think everyone with bladder cancer has reason to be hopeful. My diagnosis is very similar to yours, except that my tumours are carcinoma in situ which research shows are rather more aggressive than others. Since none of us know our future, I’m trying to use that as a reason to reduce my worrying (with varying degrees of success, depending on the day!). All the best.

[marysue]

Hi Scott D:

You basically hit the nail on the head in interpreting the details of the report.  And yes, your uro will need to fill in a few blanks especially with next steps.  Given that it is high grade and Stage 1 into the lamina propria you will most likely require some type of follow up treatment.  Your uro will get into those details with you.

He may or may not recommend a second TURBT to confirm the first diagnosis and/or either follow up BCG or some other drug treatment or (don’t get too excited yet) go for a radical cystectomy.  Stage 1 is a bit of a balancing act and uros really vary on their approach so it will be prudent to get down to the nitty gritty with him about your risk for progression.  That will probably be the main determining factor in deciding next steps.  Some patients are given the choice of a follow up drug treatment schedule like BCG or do the radical cystectomy right off.   Others if their risk for progression is pretty high are given the recommendation to opt for the radical cystectomy.  If you are given the choice between the two options it will take some discussion with your uro to discuss the pros and cons of each and some deep thinking on your part to figure out which option you’d be the most comfortable with. The bit of “better” news is that it is urothelial carcinoma and not carcinoma in situ which is a bit more aggressive.

The other bit of “good news” is that the cancer is out and you have a bit of breathing room before the next steps.  Whatever future choices are made will be to help prevent recurrence and ensure a better chance of survival.  Best Wishes going forward and let us know if you have any questions.  No question is a dumb question.  (((HUGS)))

[Nightingale]

Hi Scott D et all:

MarySue and Coliver52, thank you for your input and feedback.  I am sure it will help Scott immensly.  For what it’s worth, I wanted to share with all of you that there is information in the Bladder Cancer Canada website. https://bladdercancercanada.org/en?s=Papillary+urothelial+carcinoma%2C+high+grade

I had to reduce the search words to “Papillary urothelial carcinoma, high grade” to get results.  The Patient Guidebooks have more detail.

My Best,

[Scott D]

Thanks for the support Coliver52, MarySue and Nightingale!

I just printed one of the Guidebooks. Good information to have handy.

[Cher-L]

Good morning Scott so happy you got your results ! Now you know exactly what you are dealing with and with the wisdom of those here it will only strengthen your path . Fists up !

Cheryl

 

ps: still waiting for mine  will post as soon as I hear

[Scott D]

Following up with my doctor appointment yesterday. He confirmed Stage 1, high grade cancer. He was optimistic about the future and said the pathology report was encouraging.

Next step will be another surgical procedure to “scrape” a larger area of the bladder where the tumors were located. Less of an invasive procedure than a TURBT he says.  Hopefully this can be scheduled within the next month. After that, it will be BCG treatments.

[marysue]

Hi Scott D:

That plan sounds about right from what I’ve heard and read from other patients with a similar diagnosis.  The second scraping surgery will most likely ensure that cancer cells were not left behind and hopefully the BCG treatments will do the job in triggering your immune system to be able to recognize and fight off any future cancer cell development.

BCG has worked well for me despite the challenges I had with the treatments.  I’m in  my third go round with BCG treatments which are on hiatus until September or October.  When I was first diagnosed in 2008 I was only prescribed 6 treatments as they were not doing the maintenance sets back then.  When I had a minor recurrence in 2010 I was prescribed 15 treatments – a second set of 6 followed by 3 sets of 3.  This time around in 2022-23 it is the same deal.  I’ve had more to deal with this time around but I truly believe that a lot of my issues stem from having Epirubicin instilled in my bladder post op which did not set me up well for the following BCG treatments.  Between my first and second recurrences I had 12 clear years which given all my adventures and misadventures with my health I rate as pretty darn good.  We hope that BCG will eradicate the cancer for good but if that doesn’t happen we hope that it will help prevent the cancer from coming back frequently which will delay or prevent progression.  BCG is still the gold standard follow up treatment for non-muscle invasive high grade cancer.  Best of luck going forward.  (((HUGS)))

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