Recurrence after high grade non- muscle invasive cancer

[Xandra]

It’s almost two years after my initial diagnosis of high grade non- muscle invasive cancer.  At my last cystoscopy multiple tumours were visualized.  February 19th.

Although knowing that bladder cancer can recur I was still shocked, my first thoughts all right let’s get this out.  I had finished up my BCG maintenance dose in January, delayed from the holidays and Covid19.   The cystoscopy four months before was clear.

How could this have happened so fast?  I dressed and went to the OR booking clerk, who told me that the soonest OR date was in April.

That seems an awfully long wait time for me.  Though I know that everyone else waiting has a probable cancer too.  I am worried that the wait time may affect my survival chances if it’s high grade invasive again.

I try and distract myself, our latest grandchild was born February 12th, she’s a wonderful distraction. Then wonder if I should be advocating for myself more strongly.  I did send an email to my urologist (I hadn’t seen him as a Fellow did the cystoscopy) asking for a phone call or email, but did not hear back.  Would raising a fuss about wait times for cancer surgery with my MLA be effective?

I feel so anxious and uncertain of the path forward.

 

 

 

Xandra

[Tana]

Hi Xandra; I read about the recurrence after 4 months ago it was clear. So sorry to hear. It is shocking to hear and waiting is the pits. You emailed your urologist; can you give him a call so to speak to him about all your concerns? I have called my urologist a couple of time’s when I haven’t heard back and I need to ask for more information. He did call me back. It shows you are doing self – care and that’s a good thing. Covid hasn’t helped with wait times but I was told that because of bladder cancer having recurrence that they stay on top of our treatments and surgeries if needed and scopes as needed. Yes do talk to your urologist about your surgery date and concerns. As for talking to your MLA if that’s what you want to do ; yes; go for it.

I’ve been waiting for an endocrinologist appointment to check a concern and the wait is annoying. I did call to get on the wait list and they said I’ve been fast tracked – got in 3 months instead of 6.  I just want to know if it’s metastatic from the BC. As you said – if it’s to help survival then let’s get on with it. Best Wishes to you Xandra- and so nice you have a new family member! Take care- stay positive- Tana.

[Xandra]

Thanks Tana.  I do try and stay positive. Knowing that the last time I had to wait two months to see the urologist before my first cystoscopy, and then another three weeks for the surgery.

There doesn’t seem to be a standard on wait times that I can check.  To reassure myself that yes an eight week wait is not a big deal.

Waiting is the hardest part.

 

Xandra

[coliver52]

I am so very sorry about your worries. From my own experience I would only say that the wait time you have been allocated may not be entirely atypical. Like you (and I suspect most of us with this type of cancer) I have found waiting agonizing. I was diagnosed with high grade noninvasive cancer in December of 2019 and while I had my TURBT fairly quickly – a month later – I was stunned that I had to wait until April 2020 for my first round of BCG. After several cystoscopies and scans I had to wait for a definitive answer that the BCG had not worked until September. I then did not begin my second round of BCG until late November. I am under the care of one of the top uro-oncologists at a downtown Toronto hospital. He is nice but also told me the first time I met him that he gets over 600 emails a day! Even when I call it can take ages for his administrative assistant to return my calls. I am now still waiting for the results on my second round of BCG. Though my calling did not seem to make any difference for me, I think calling repeatedly may be your best option, given that these specialists are inundated with emails. If nothing else you may get the reassurance that a two month wait is not actually very dangerous in your case. I very recently got an opportunity at a social occasion to meet a uro-oncologist to whom I vented these very concerns. He was extremely sympathetic but additionally reassured me that no urologist would gamble on a person’s survival chances to the point of allowing what they considered excessive delays. So I have concluded that while we may go through these agonies,  perhaps we can put our trust in these oncologists and urologists enough to put up with these delays. So maybe you should advocate as much as you can by pestering your doctor with calls. And while doing so also feel maybe a tiny bit less worried by knowing your urologist probably feels a two month wait is not threatening to your future longevity. In the meantime I  am so happy for you that you have a beautiful new grandchild to get you through these difficult times. Take care. Christine

[Joe]

Hi Xandra,

Your logic is valid and your concerns are legitimate.   TURBT should be done within two weeks after cystoscopy at the latest.  TURBT 6 weeks after 6 cystoscopy finding tumor is not acceptable.  Especially, this is the case of recurrence after the treatment of high grade tumour with BCG.   As you have said,  the cystoscopy was clear 4 months ago and the tumors have grown to be visible in 4 months.  I consider it as fast growing tumours.  Getting the tumor out before it gets to the muscle layer is critical because that increases probability of cancer cells be transferred to other organs by lymph nodes and blood vessels, which affect overall survival rate.   The OR receptionist  does not seem to have enough detail knowledge of the bladder cancer.  She should not be the one who is deciding the timing of TURBT.   Maybe, your urologist finds out your TURBT schedule and expertise TURBT.  But, I would not count on it.  I would go directly to the urologist office and talk to the urologist.  I am sure your urologist will change expertise the date of TURBT.  Or, the urologist should look for another hospital for your TURBT.

There is a guidelines for waiting time between different diagnosis and treatments.   I have seen it before.  I was looking for it but I could not have found it yet.  I will post the link as soon as I find it.

The tumours could be low grade, then we can relax.   But, that will not be known till the biopsy result after TURBT.

I don’t mean to scare you, but as you said yourself, you need to be your strong self advocate yourself this time.      One thing you may get the indication if your new tumours are high grade or not is to request cytology – urine analysis.  Cytology gives over 90% accuracy if your tumors are high grade tumors.   Dr. Black of UBC/VGH said he always order cytology whenever he does cystoscopy for high grade tumors.  If cystoscopy says negative, and cytology says positive, he said he has to look for the reason.

Anyway, in your case, it is important that you get your TURBT done early to prevent the tumors progressing into the muscle layer and get the biopsy done to decide the treatment strategy moving forward.

We will be here with you all the way.   If things don’t move fast enough,  BCC may be able to help.   I know Jack had helped expertising the appointment of some patients in the past.

best

 

[Joe]

Below is the wait time between cystoscopy and TURBT in three countries.

UK  – from a bladder cancer patients message board.

My experience in uk is : blood in pee next day GP one week later Urologist appointment 10 days later turbt 10 days after that ( grade iii aggressive cancer but not gone thru bladder wall one small tumour removed) started BCG 3 weeks after TURBT.

SWEDEN -A study done by Orebro University School of Medicne in Sweden, reported in January 2020.

Cystoscopy to TURBT – eleven days

CANADA –  2018 Improving patient journey and quality of care: Summary from the 2nd Bladder Cancer
Canada-Canadian Urological Association-Canadian Urologic Oncology Group (BCCCUA-CUOG) bladder cancer quality of care consensus meeting

Research has also suggested that these delays have increased over time in certain areas: first GP
visit to first urologist visit: 32 days; first urologist visit to cystoscopy: 22 days; cystoscopy to
transurethral resection of bladder tumour (TURBT): 18 days.    So, 18 days are considered late.

best

 

 

[Xandra]

Hi Joe,

To complicate matters my regular urologist Dr. So has been off sick for three months and I have only met with the Fellow.  Dr. Black of

UBC /VGH is my new urologist but I haven’t met him.

I suppose that one of the reasons Dr Black is so busy is because he’s covering for Dr So.

I guess that I will get on the phones tomorrow.

Thanks so much for your help in looking up those wait times.  I remember that last time I had a TURBT it was two weeks after my cystoscopy.

I should ask Dr. Black about urine cytology too.  To see if it’s high grade.

If I ever get to speak with him.

 

Xandra

[Xandra]

Hi Colleen,

I too was surprised at the wait to start BCG but my urologist explained that the site has to completely heal before BCG is given so that you don’t get a toxic reaction, or something to that effect.

Xandra

Xandra

[Joe]

Hi Xandra,

It is excellent that you have been treated at UBC/VGH.  Both Dr. So and Dr. Black are excellent urologists and well known not only in BC but in Canada and in the world.   Many patients outside of Vancouver Coastal are sent to see them for their second opinions.   So, you are in excellent care.   Don’t worry about the treatment protocols because they were involved in establishing the protocols for patients in Canada.

All we need to do is to make sure your case will be presented to Dr. Black in a timely manner.

I have heard it is hard to reach Dr. Black directly on the phone.   Anyway, you can try it.

Some patients of Dr. Black were successful in reaching Dr. Black by writing an email to clinic@ubcurology,com.  A patient of Dr. Black usually starts by saying  “Please forward the email to Dr. Black”.   I suggest that you explain your situation and request the date for your TURBT to be informed to you.

Dr. Black is the chair of the BCC medical advisory board.

Incidentally, Dr. Black uses cytology only if he cannot find tumours by cystoscopy for high-grade patients to make sure he does not miss anything.  In your case, the recent cystoscopy already found tumours, so Cytology is not required at this time.

best

• This reply was modified 3 years, 10 months ago by Jack Moon.

[Xandra]

Hi Joe,
Thank you again, it really helps that someone else can understand what I am going through and help me to strategize. Any help is welcomed.
I did send an email to that address and was told that they would forward it to Dr.Black. I sent it the day I had my cystoscopy, a week ago tomorrow  and I haven’t heard back yet.  Perhaps he had 600 emails.
I do appreciate how lucky I am to have had Dr. So and now Dr. Black, I attended the seminar they gave last fall, and I have read some of the papers they have written.
I worked in pathology as a pathology assistant for over 20 years. I am fascinated by the wonderful human body.
My first instinct after diagnosis was to comb the internet for scientific studies on best practice for my type of tumour.
Thanks again for listening and for the help.

Xandra

[Joe]

Hi Xandra,

Oh.  It’s been a week already since you have tried to contact Dr. Black.

As a bladder cancer patient, all we can do is to find the right hospital and the right urologist, which You have been successful.   The next thing we can do is to make an effort to get an early diagnosis and the right treatment as soon as possible.  I believe also that  Dr. Black and Dr. So will give you the most appropriate treatment not only based upon their clinical experience but also with the knowledge of various recent studies.   We just want to avoid your case from falling into a crack in the processes of VGH, such was the case the OR booking clerk was making your TURBT schedule based upon the OR availability but not considering the nature of urgency.   I have heard from someone that Dr. Black has a TURBT day and he does like 20 TURBTs that day.  He may be able to add you to that day or he can reschedule someone and let you in instead.  Or, in the case of TURBT,  other urologists in VGH can do it.

If you cannot get the response from Dr. Black, the next thing we can try is to get a confirmation that Dr. Black is aware of your case

I know a fellow who had visited personally VGH.  He could not get to see Dr. Black, but a nurse told the patient that Dr. Black was aware of his case.

Do you think contacting Dr. So and ask him to contact Dr. Black?    https://www.vchri.ca/researchers/alan-i-so

Sorry,  I may be just spitting out my thoughts.

I also have learned to appreciate how complex our body is and what a fantastic machine is … except we get sick.

bset

 

0

[Joe]

Just for reference,  I was searching similar cases in the US side bladder cancer discussion forum.   This patient found a small red spot in his bladder after 2 years of BCG treatment.   He is very anxious about it.  He had his cystoscopy done on February 25 and he is getting his TURBT on March 1.  I am not comparing the US vs Canada.   The fact the TURBT is done less than a week is an indication of urgency for TURBT to remove the tumor and being analyzed early after recurrence.

Incidentally, I have heard that Dr. Black spends the weekend reading his emails.    So, let us hope that you will get some reply either from the hospital or from Dr. Black by Monday.

 

• This reply was modified 3 years, 10 months ago by Jack Moon.

[Joe]

I have come to consider that the delay of TURBT is not due to the lack of the resource, ie. the lack of ORs or a lack of urologists to fill in during the absence of Dr. So.  It is likely that the ORs are booked by nonurological surgeries before Dr. So’s patients’ OR requirement has been processed.

The day before yesterday, Hon. Andrian Hix, the BC Minister of Health explained that the number of surgeries that were performed in February was higher than the same time last year when the surgeries were not affected by the pandemic.   So, the pandemic is not the reason the OR for the TURBT became unavailable.

I have called UBC hospitals to find out the number of ORs and if any OR is reserved for the urological surgery.   The person who answered said that was not the case.  It is according to the booking of OR, availability of other things like anesthesia.  As a patient of Dr. Black had mentioned that Dr. Black does multiple patients a day just like my urologist has a cystoscopy day when he does 30+ patients because that is more efficient.  Anyway, I do not know how the booking of OR is done at VGH/UBC hospitals.

There are 8 ORs (Wikipedia) in UBC and 21 in VGH.  16 additional ORs are to be completed in 2021 (2017 CBC news).    I do not know the internal process of VGH/UBC hospitals for the OR reservation system works.  I do not know how they prioritize the surgeries among all surgeries which require an OR.   The only classification I know is essential and non-essential surgeries, and perhaps also life-threatening or not.   It is very possible that non-essential surgeries could have been booked when Dr. So’s patient’s TURBT should have been booked.  One can think of delaying a few non-essential surgeries and fit in Dr.So’s patients’ time-sensitive essential surgeries.  But VGH/UBC are such big institutions and their OR booking system may not be as flexible.   I do not expect that Dr. Black books the OR himself, rather he instructs/communicate to the OR booking coordinator to do it.   If I were the OR booking coordinator when the OR reservation system says 6 weeks away and knowingly TURBT needs to be done within two weeks,  I would immediately inform and consult Dr. Black the OR is not available till 6 weeks later.  Then, it is up to Dr. Black to decide if 6 weeks wait is acceptable or not as he has dealt with many patients who had a recurrence during and after BCG treatment.

In terms of the resource of surgeons,  I have identified 12 urologists in the UBC Department of Urological Scienent who are the Fllew Royal College of Surgeons of Canada (FRCSC).    I know Dr. Ben Chew, Dr. Chris Nguan have TURBT.   I think Dr. Black’s load on clinical practice has increased due to Dr. So’s absence.  Because he is a professor, a research scientist leading a team of residents and postdocs, I do not think he is not a full-time clinical doctor.  So, I assume that he is reducing his non-clinical duties to enable him to do more clinical work at this time.   So, I do not think the lack of human resources is not the main reason for the delayed TURBT schedule but rather I think it is caused by the delayed allocation of the ORs for Dr. So’s patients.  It can be a totally different reason.  But it frustrates me to see any patient, including myself, be put into an abyss of non-transparency however it may be unintentional.

Dr. Peter Black,  Dr. Alan So.

Professors and Associate and Assistant professors.

Dr. Martin Gleave (Head of the department). Dr. Larry Goldberg, Dr. MacNeily Andrew, Dr. M. Lynn Stothers, Dr. Joel Teichman

Clinical Professors and Assistant Professors

Dr. Kourosh Afshare, Dr. Ben Chew, Dr. Chris Nguan

Dr. Ryan Flannigan, Dr. William Gourlay, Dr. David Harriman,

[Xandra]

Hi Joe

I spoke with Dr.Black this week.  He said that the delay is caused by his availability.  He does other surgeries prostatectomy, cystectomy, and kidney removal on other days at VGH.  He’s a urology oncologists, as is Dr.So.  He and Dr. Gleeve divided up Dr.So’s patients during his leave which is probably through to the summer.  Thus they have a larger patient load.

He said that he doesn’t believe it to be a risk to invasion through bladder wall with the extra month wait.   He said he could refer me to another urologist in the office if I want but they wouldn’t be able to do the enbloc surgery that he does.  Only Dr. So and Dr Black do this type of surgery.

He said that there haven’t been studies done on wait times, but it was an arbitrary decision that he was part of.  It’s unfortunate that there’s any wait, ideally you would remove the tumours the next day after cystoscopy.

So it’s my decision whether to go to another urologist or wait for him. He said if it was him he would wait for himself.

So I decided to wait but rethinking the decision constantly. The booking nurse at his office is aware and can book me with another urologist at any time.  The difference being that they don’t have a speciality in oncology.

 

Xandra

[Tana]

Hi Joe and Xandra-

Thanks for all this information- it’s good to know. I hope the best for you Xandra getting in soon. Waits are awful. So glad you finally got to talk with Dr.Black. I hope you feel reassured. Good going on your self advocacy.

I do want to say that when my family doctor referred me to an urologist I had to wait for two months to see him.  I was booked for a trip so went as family doc said to go ahead but then got a cancellation a week later and I couldn’t take it. I was so annoyed at myself thinking I could have gotten in sooner. I contemplated seeing another urologist and fretted over switching until I sat and felt my intuition speak to say keep the  appointment even though it was a month later. I am grateful I did as I really like his manner and professionalism and Joe assured me treatments were all on par with protocol for my type bladder cancer ( thanksJoe!). Then the bcg was delayed due to shortage. Ya – I know that feeling of urgency. Sounds like Dr. Black is very good.

Good luck with your Turbt and that it’s sooner than expected and wishing you a speedy recovery.

Tana

 

 

 

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