Concerned about treatment timelines.

[Edwin Castle]

I am new to this forum.  I am wondering if the timelines of my treatment so far, are within acceptable parameters. Here is the timing of my experience so far.

October 10 2019. I visited my family DR. re Hematuria. (blood in urine).

October 10 2019. Managed to get an Ultrasound same day. (Pulled some strings.)

October 15 2019. Called in by family Dr. for results. Found mass in bladder consistent with Bladder cancer.

October 30 2019. Got a CT scan ordered by family DR. before seeing Urologist.

November. 1 2019. First visit with Urologist. Schedule Coloscapy.

November 29 2019. Have Coloscapy procedure done. Shows 1 large 1 medium 2 small tumors.

December 6 2019. Receive surgery date. January 15.

January 15 2020. Turbt Procedure done.

February 7 2020. Visit with Urologist for results of biopsy. High grade, Stage 1. Set up date for Staging Turbt. March 25 2020.

So here I sit waiting for the March 25. I guess my question is, does this timing sound about right, or are thing dragging a little. Or maybe they are progressing faster than average.

 

 

 

 

 

 

[GerryW]

I think that the timeline can vary widely depending on many factors including diagnosis… mine was T2b muscle invasive bc and prostate ca..

Here is quick snapshot of my timeline..

Timeline: Diagnosed: May 2015, Chemo Fall 2015, Surgery January 2016

More detail can be found here…

My Journey

My best thoughts with you on your journey. You can find much support here and with our community.

Gerry

Kingston and the 1000 Islands

[Tana]

Hi Edwin;

Sorry to hear that you are diagnosed with bladder cancer.

Your timeline Sounds pretty darn good to me but that’s my opinion.  I saw my doctor immediately after the first blood seen in urine May. 8( in a Week). Got the ultrasound one week later May .13 but it didn’t show anything. Results from Ultrasound May.28th.

Doctor referred me to Urologist and got in July 23rd ( he was on holidays but I was told that was still quick). I know I felt anxious and impatient during that wait because I felt time was of the essence to know what I had and to get on it whatever was needed to get healthy.

Cystoscopy two weeks later (Aug.8) showed three tumours. First surgery Turbt one month later (Sept.6 ) and my diagnosis two weeks after on Sept.17th. Ta hi grade NMIBC.

Second surgery I heard was to be 6 weeks later but he was booked so I got it after 4 weeks on Oct.4./  2019.

Then I was really anxious to get on the BCG right away but that was delayed. And am on the three month cystoscopy check now so have had one in January the day before I started the BCG treatments.

Today I just got a call from my urologist receptionist telling me my next three month cystoscopy has been rescheduled ( to just a week later).

Wishing you all the best on your healing journey Edwin;

Tana

 

[Joe]

Hi Edward,

I think you did very good job to have GP did ultra sound on the day you had visited for gross hematuria.  But, your urologist seems to be a bit slow.    It took 6 weeks between the time Ultra sound identified a mass and the time the urologist did cystoscopy.   Also it took 6 weeks to get the TURB done once the urologist identified the tumor by cystoscopy.  In my case, the first TURB was done two weeks after the cystoscopy found the tumor though I actually went to the urologist office and talked to a receptionist to see if they could expertise the TURB.

Anyway, your tumor is T1Hg and already the first TURB was done. The 2nd TURB is a recommended procedure by Canadian Urologist Association for High grade  non muscle invasive BCa.  So it is good know that your urologist is following the guideline.

In terms of waiting, I read somewhere describing what are reasonable waiting time for each procedure. But I cannot find the source now.  Instead I have found the consensus statement for quality of care by BCC and CUA.  https://www.cua.org/themes/web/assets/files/5246.pdf

In the report, it says, for muscle invasive BCa patients, a study shows there was a significant detrimental impact on survival associated with delay in refreral.

The report also says a research has also suggested that delays have increased over time in certain areas:
first general practitioner (GP) visit to first urologist visit: 32 days;   first urologist visit to cystoscopy: 22 days; cystoscopy to  TURBT: 18 days;  TURBT to CT scan scan: 17 days; CT scan to radical cystectomy: 34 days; total delay from first GP visit to radical cystectomy: 116 days

We could use the data as reference.

Best regards,

Joe

 

 

 

 

[Edwin Castle]

Thank you Joe. The information is just what I was looking for. From what I can tell you my Urologist is a little sluggish with his procedure dates, but probably not extreme. I also suspect  that he is very heavily booked and is doing his best for all his patients and having to prioritize based on OR. availability etc. I still don’t know how fast a high grade tumor can grow, and whether 4 weeks rely makes any difference.  My reason for this question is that although my Urologist said I probably had this tumor start about 1 year to 1 1/2 years I suspect,( in hind sight) that I had it much longer.   I ignored the frequent urination, putting it down to my water pills causing the issue.  Thanks again and take care. Edwin.

[Tana]

Hi again- yes I feel it does depend on a lot of variables for appointment times but that we can try to speed up things by requesting sooner appointments which I did ask for after the Ultrasound.

I was told I could get a different urologist so yes Could  have had it speeded up, however, I checked reviews and decided I’d prefer to wait three weeks longer to get the urologist I felt was “better” reviewed.

Also what was puzzling was The Ultrasound showed absolutely clear and my family Doctor, however, got the referral in at once. So I feel grateful she pushed things along regardless of the ultrasound.

So I feel things moved along well all in all and am very grateful that we have doctors and a medical system free in Canada however, with a very busy patient list.

I read that cancer can also have been started 6 years prior – or even longer.  Sorry don’t have the quote for that-

Again I think if you feel things are too slow to see your doctors and ask.

I agree Edwin; I believe it’s a matter of OR availability and the urologists being heavily booked. I do think they are doing the best they can considering all the variables.

I did find I was impatient waiting for the BCG treatments to be started right away as I was hoping for it to kill any cancer cells in bladder if any new ones were growing as I wasn’t sure how fast tumours could grow and I was hoping for another clear cystoscopy ( the second one was clear no cancer showed) I had to wait three months for the BCG ( apparently was a shortage so that was out of my control) ( I called two different times to ask when can I get started and she said there’s a wait list and my third cystoscopy came up the day before the treatments were to start.

There were suspect red spots but urologist said wasn’t for sure and said let’s hope the BCG kills it. I can’t help but wonder if I had of gotten the BCG in two weeks after the Second Turbt would it have showed clear! But that was out of my control to get it sooner though I tried.

I also wondered if my Second Turbt was done too soon ( 4 weeks after the First Turbt that got the 3 tumours out) and so good question- how fast can tumours start up?

Anyway finished the last 6 weeks of BCG and am looking forward with hope of a clear Cystoscopy April.

Good luck with your journey- bless you.

Tana

 

[coliver52]

Hi Edwin, I think the rapidity of your diagnostic progression is really excellent, and as others have said, having to wait a few extra weeks for the second TURBT is not a problem and very much consistent with other people’s experiences. My “velocity” of experiences was the opposite of yours. My GP referred me to a urologist, given my symptoms, in September 2019 and by the start of December 2019 I still had no appointment with this Toronto oncologist! Becoming frantic, I finally decided to put down a big chunk of change to get booked into the main Mayo Clinic in the U.S. on December 5th and they gave me the results on December 20th, confirming I had high grade T1 bladder cancer. I got in quickly to see a great oncologist to do my TURBT in January at Princess Margaret and received results of that TURBT on March 3rd (so that was a six week wait). Now I am to begin BCG March 30th, which seems an eternity from my diagnosis post TURBT on March 3rd.  But I read today the need for “rest periods” between treatments and/or surgeries of one’s bladder. Like your curiosity about the delay between TURBTs, my delay between diagnosis and treatment seems long (my BCG treatments start a month after diagnosis from my TURBT). I read that the delays are often the result of giving the bladder time to recuperate from surgery (TURBT) or treatment (BCG), so it may be that the length of time you are waiting has to do with ensuring your bladder has fully recovered from its first TURBT before going in for the second one. Overall, I think you are on a good (perhaps even enviable!) treatment schedule.

Like so many bladder cancer folks, you are finding the waiting very hard and wonder if it’s compromising your prognosis. In your case, my opinion is that it is not at all. It sounds like you are in good hands. I wish you the very, very best and hope you will return here with other questions, as no two people’s experiences are exactly alike and it is good to hear several opinions. We are all here to help and support one another.

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