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Hi Xandra,
I am glad you were able to reach Dr. Black. Your decision to wait for Dr. Black’s time to do your TURBT makes sense after I read your comments. Dr.Black is a world-renowned research scientist in bladder cancer, combined with his many years of clinical experience. He says it’s okay to wait till he has time for your TURBT and he also says it is better to do the TURBT himself. So, I would pause thinking about bladder cancer and enjoy precious one month for something else. Because you may need to start another journey depending on the pathology of the TURBT. Of course, we all hope it will be a low grade.
I have thought of tangible and intangible benefits for Dr. Black to do the resection.
– He can see the condition of the bladder in his own eyes.
– He may use blue-light cystoscopy in addition to white light during TURBT. Bluelight has shown to discover the tumours which could have been missed by regular white light cystoscopy. Other urologists may not how to use it as it is used only for bladder cancer.
– En Block resection may reduce the rate of recurrence and provides better samples for pathology.
I have been aware of En Block resection but I was not aware that Dr. Black and Dr. So have been using it. It’s good to know.En Block resection is to try to remove the tumour in one piece, rather than the conventional way which removes the tumor in fragments, some of which may be implanted to other parts of the bladder and causing recurrence. The tools and techniques vary and Dr. Black and Dr. So could have reached to expert level for En Block resection. Because urologists around the world started using En Block resection but the data were lacking, In 2020, there was an effort to come to the consensus of En Block at the international level. There are a few clinical trials. But the value of bladder cancer control, especially reducing the recurrence rate have not been proven yet. So, there is a trial started in Hong Kong involving 350 patients comparing the conventional resection and En Block resection. The result should come out in 2021. Below are the specimens that were given to the pathologist by a urologist after TURBT. Would the specimen by En Block give a pathlogist better material for accurate histological analysis, Xandra?
Hi Xandra,
I know time is passing too slowly for you. I once waited 11 weeks after a bad cytology to have a TURBT. At that time I didn’t know my cancer was G3. But here I am, 15th BCG this past Monday and livin’ the dream.
Take care, hang in there, all the best,
Peter
Joe,
The benefit of enblock is that you can stain the margins of the tissue during gross pathology before it is made into slides. Not sure about bladder specimens as that’s after my time. In other surgeries a stitch is put in as a marker by the surgeon and he writes on the pathology form the orientation.
Peter,
Thanks for the encouragement. It all seems to take too long. I remember from my first TURBT, waiting on the path results, then was told that as it was T1 I would need a second TURBT six weeks later, and waiting on that path report.. Waiting is the worst. Seasons change through the waiting. I am glad for spring again. Waiting on our turn for vaccination too.
Xandra
Thanks, Xandra for the insight into the pathology. What is the process from the time a urologist removes tumour(s) from the bladder till we get a pathology report? The treatment depends upon the urologist who reads the pathology report. Whether the pathology reports say low grade or high grade makes a huge difference in terms of the subsequent treatment. Is there any rule (algorithm) that pathologists use to determine the grade of a tumour? Do multiple pathologists check the same slide to improve the accuracy of the pathology? It seems it is not uncommon to send the slides to Johns Hopkins to get a second opinion in the US?
This is how it usually works. Monday surgery, specimens are sent to the laboratory.
Tuesday gross pathology. Pathologist dictates as he goes through each case. Larger specimens, like a bowel resection or mastectomy are carefully marked and measured, representative pieces are cut away and the pathology assistant (was me) put them into marked little perforated plastic containers, noting amount of specimen in each.
Smaller specimens are usually submitted in total
Sent off to be made into slides embedded in wax sliced very thin, stained appropriately, which the pathologists will read the following day or two. Wednesday or Thursday Make a dictation. Dictation is typed into computer Friday? Both the gross and final. Reports are electronically sent to doctors.
About a week. Everything can be delayed by stat holidays. Unfortunately I have found that the urologists at our VGH/UBC office seem to take a long time to phone patients, which they insist on doing before the reports are forwarded to family doctor. Due to their heavy workload this can take two or more weeks for them to call us, the patient.
They do take the time to thoroughly go over the report and explain the next steps, which a family doctor wouldn’t be able to. I always ask for and receive a copy of the path report. It can seem like torture waiting for that call, especially when you know as I do how long it takes, knowing that the report is at the office waiting for the doctor to work his way down the line to your report.
Waiting is the hardest part for us. Not knowing.
Xandra
Hi Xandra,
Thanks again for the detailed explanation of the process and to understand that the pathology report will be ready usually in a week. Sounds like the neck is the internal process is adding another week, making what’s available in one week to two weeks, and plus. Also, the pathology reports are written in a language that only the pathologist and the urologist can understand unless the patient is familiar with the language. So, I have checked how people are managing the wait time in other parts of the world, particularly in the US. In terms of patients’ voices, I have checked the patients’ discussion forum like ours. I also checked the stats available on the internet.
In the US, though there may be exceptions, the pathology report is available in a few days after TURBT. It does not seem to go through GP. The patients who live in Florida, North Carolina, Oregon have received the pathology report directly from their urologist office two days after TURBT. Some patients get to see the report when they see the urologist 7-10 days later. So, I have noticed that many patients express their anxiety waiting for the result of the pathology report, but not for the waiting time. In the US, it seems that the anxiety of the wait time/delay is often caused by the denial of certain treatment because of the type of insurance the patients have. A patient in Hongkong had the report the day after the TURBT, but he had to wait another week to see the urologist. In the UK, it seems it takes longer. A patient who lives in London says that it took 16 days to receive the pathology report. I could find anyone from Australia is posting in the US discussion forum about the wait time.
Looking at the big picture of the wait time, Canada is not doing well compared to other countries whose spending on healthcare is comparable to Canada. See Figure 1. The wait time in the US, Switzerland, Australia is 1 month or less for about 60% percent of patients. Only 35% of the elective surgery is done in 1 month or less in Canada. The UK is about 45%. I have also created a comparison table among Canada, the US, UK, and Australia. (Figure 2). The US has almost twice urologists per capita than Canada and they do not so call universal healthcare as Canada, UK and Australia do, so we can understand the wait time, in general, can be shorter in the US. But, why Canada is underperforming in terms of wait time compared to two other universal healthcare systems in England and especially in Australia. Fraser Institute points out that Australia spent approximately 10.1 percent of its GDP on health care in 2012, slightly less than Canada (11.8 per cent) on an age-adjusted basis. At the same time, it generally had more medical resources (including more doctors, more diagnostic technology units, and more hospital beds), lower wait times, and comparable health outcomes. Australia is in some ways quite similar to Canada. Both the Canadian and Australian systems are primarily funded through general taxation. Unlike Canada, however, Australia’s health-care system relies to a large extent on a private, parallel health-care sector to deliver health-care services to the population. In the UK, a patient can pay a private urologist to get TURBT done if the patient thinks the wait time by NHS(National Health Service) provided a TURBT schedule is too long. UK NHS had implemented cystoscopy by trained nurses to reduce the wait time for cystoscopy. In 2014, Australia also implemented a cystoscopy by nurse program. In 2014, a not-for-profit hospital in southern Australia had implemented Fast Track Cystoscopy Service – an efficient one-appointment process for both consultation and procedure. It claims Reduced patient waiting times, Flexible appointment times including Saturdays, Consultation by the treating Urologist on the day, immediately prior to the procedure, and Select your preferred surgeon or next available appointment. It seems there are several ways to improve the wait time. Reducing the wait time in Canada may require a structural change to our healthcare system.
Also, I have noticed that Canada has the highest percentage of urologists who are concurrently involved in Research and Education. This is good but it also means that 25% of the urologists in Canada are not practicing clinical work full time. On the other hand, almost no urologists in UK and Australia are involved in education or research, thus 100% of their time is spent on clinical work. This makes difference in availability of urologists to clinical work in Canada and it is likely affecting the wait time.
I think those who post to the discussion forum are usually self-advocate patients, but they represent a tip of the ice burg of all other bladder cancer patients who may be hesitant to participate in the forum or those for different reasons do not come to the site. But the wait and the delay are very anxious experiences for most bladder cancer patients. If 12,000 new bladder patients are expected in 2021, and each patient experiences one week of anxiety because the pathology result does not reach for two weeks instead of one week when the pathology report is ready, it means 12,000 patient weeks or 230 patient-years of anxiety can be eliminated if we can make the pathology report reaches the patients in one week. I think it is a well worth stride to reduce the wait time even just for the first pathology report.
Wow Joe,
That’s a lot of research. Thank you. I am just waiting, all that I can do. Here we do the combined consultation and cystoscopy. Though the only time I had that was the first time. I talked with the doctor then went to the cystoscopy room. They have several. All the other times we would meet in the cystoscopy room. But moving onto TURBT is a wait.
As far as path reports go it would be possible to do in three or four days afterwards. It all depends on workload. I was trying to be generous with time.
I am also wondering about the next steps, though Dr. Black said let’s take it one step at a time. I know that it’s considered a fail of BCG treatment. So then what? Obviously if it’s invasive again I will be in line for a complete cystectomy. How long is the wait for that? How long is recovery? I would guess a couple or a few weeks.
Xandra
Hi Xandra,
Vote me in the next provincial election. If I am elected, I will make sure that the pathology report will become available to the patients as soon as the report is ready in the pathology lab. I will also make sure that the pathology report will be written in a language that the patients can understand. 🙂
In terms of so-called BCG failure, the treatment is not automatically radical cystectomy even if the recurrence is high grade as each patient’s circumstance is different and there have been several new drugs and treatments in recent years for bladder preservation strategies. It will become a choice by a patient based upon a recommendation and a discussion with the urologist. I have noticed that the decision process of making the right choice brings another challenge for many patients.
BCG failure is defined as follows ( a 2018 video by Dr. Cookson, Chair of Urology in University of Oklahoma)
BCG Intolerant : recurrence disease in the setting of inadequate BCG treatment due to side effects
BCG Resistant : recurrence of lesser or improving disease that resolves with further BCG
BCG Relapsing : recurrence after achieving 6-month complete response, i.e. disease resolves after BCG then returns
BCG Refractory : No complete response by 6 months after BCG .. not improving or worsening disease despite two courses of BCG or maintenanceYour case is not BCG intolerant. It does not sound like BCG refractory. It seems that BCG relapsing fits. But there have not been bladder presevation treament guidelines for each classification except that cystectomy has bee the first choice.
In 2015, the urologist community and FDA introduced a new classification BCG Unresponsive. Since then, most new drugs and the treatments have been developed for BCG Unresponsive. BCG Unresponsive is defined as below. (by Dr. Bivalacqua, Johns Hopkins)
BCG Unresponsive – recurrence (HG) within 6 months for T1 and 12 months for CIS of last BCG course (5-6 weeks of induction course and a 2-3 weeks of maintenance course) represents a subgroup of patients at highest risk of recurrence and progression for whom additional BCG therapy is not a feasible option. If it is determined as BCG Unresponsive, cystectomy is recommended.
In January 2020, Dr. Ali Cyrus Chehroudi – an MD – resident of UBC, and Dr. Black published a good summary paper on various treatments for BCG Unresponsive. It also provided a flow chart of treatment options from the first TURBT till determination if the disease is BCG Unresponsive. In going through the flow chart, I would not know how if your recurrence is considered Late BCG Relapsing (Repeat of BCG is recommended) or Early BCG Relapsing (cystoscopy is recommended) even if the recurrence could happen to be high grade.
Each patient’s treatment circumstance is different so it is up to the expert’s knowledge and clinical experience of a urologist to decide what treatment options to be recommended and discussed with the patient. I think this is where the fact the urologists in Canada who concurrently engage in research are benefiting the patients. A case in point, the VGH urology department is associated with the department of urological science of the University of British Columbia. Dr. Black has many different bladder preservation treatment options in his pocket for BCG Unresponsive. Many of the treatment options are available only in VGH/UBC. For example, I have watched a video debate by Dr. Black and Dr. Arjun Balar of NYU Perlmutter Cancer Center on the treatment option for BCG Unresponsive. Dr. Black was recommending Gemcitabine and Docetaxel Sequential intravesical chemotherapy treatment. This treatment requires Gemcitabine to be administered first, and it is eliminated after afterwhile, then Decetaxcel is administered. I have noticed that Gemcitabine and Docetaxel sequential treatment is now being used in some of the large cancer centers in the US. It has shown the efficacy is better than intravesical chemotherapy with a single chemo agent. But, the usage is limited to the large cancer centers and university-affiliated hospitals because it is a new treatment (2016) and requires additional steps.
Below is the video of the UBC urology department about emerging salvage therapies for BCG-unresponsive non-muscle invasive bladder cancer
http://www.youtube.com/watch?v=ccCooZlkh5g
Below is the paper by Dr. Chehroudi and Dr. Black on Emerging intravesical therapies for the management of bacillus Calmette-Guérin (BCG)-unresponsive non-muscle-invasive bladder cancer: Charting a path forward
My experience regarding pathology reports:
3 Turbts longest wait for a pathology report 3 days.
2 biopsies, longest wait for pathology report 4 days.
Tip: My family doctor is copied on all reports. When his office received the faxed report they would call me to pick-up.
Reading a pathology report:
I was fortunate in the early part of my diagnosis to meet a bladder cancer survivor who was a retired pathologist from a major cancer center.
He taught me the medical terms used, the key terms, and put those terms into laymen’s language. Back in those days the reports were extremely difficult to understand unless you were in the medical field.
Over the years I have been fortunate to assist many patients in understanding their pathology reports. Many I would send to my friend he would be everything in the language the patient I was assisting into very understandable terms. In fact I had 2 this weekend, very well written, but 1 of them was a bit confusing so I consulted with a Urologist/Oncologist to be 100% sure of the meaning. Both reports were actually extremely good news to the patient.
I have found over the past few years the reports are much easier for patients to understand with a lot more layman’s terms or bladder cancer terms in the reports, but some can be a bit confusing.
I also recommend to patients to get copies of their lab reports for a number of reasons especially if they are going to be pro-active.
Jack
Hi Jack,
You are very fortunate with the short wait for results. Unfortunately my doctors do not copy family docs on the pathology requisition form. My wait was 10 days on the first TURBT, and three weeks on the second follow up TURBT. I called the office asking for a copy of the path report and was told that I couldn’t get one until after Dr.So signed off on it, which he did once he called me. Three weeks later. I also requested that the path report be sent to my family doctor, but was told that the same rules applied.
I am still waiting for a surgery date which will be sometime in April. My cystoscopy was February 19th. I am just waiting while the little garden of papillary fronds grow in my bladder.
I am going to make a point in the before surgery consult to request that I get access to the pathology report sooner.
I feel it’s a difficult line to be a self advocate. Not wanting to be too annoying and wanting the best possible results.
How long did you wait between your positive cystoscopy and TURBT?
These days it’s easier than ever to understand pathology reports as we have the internet to help out with any questions.
Xandra
Hi Xandra
1st Turbt was 11 days after cysto.
2nd Turbt was 16 days after cysto.
3rd Turbt was 23 days after cysto.
Google helps a little today, but you need to know what to look for in the pathology report, as my friend (Pathologist) constantly stressed.
I so wish you did not have to wait so long for your Turbt. Hopefully the tumor fell asleep.
Wishing you all the best best,
Jack
Hi Falks,
On a personal note, I got vaccinated with Pfizer a couple of days ago. The jab on my left arm was no pain. The next day I felt sour on my arm which lasted a couple of days. I got to see my new grandson the same day. I just observed him from a 6 feet distance with a mask on. Perhaps, a few weeks later, my daughter and my son-in-law will let me hold him. The next day was in the hospital for my cysto. There are always 20 people sitting close for their turns. But there were only 5 people. My Uro said it is clear and he said I will see him the next year. I hope it wasn’t April fool day.
Cheers,
Joe
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