A thought on two different BCGs for the treatment for Non-muscle invasive BCa

[Joe]

Hi Tana,

Thanks for sharing your dialogs with your urologist.   Since you are scheduled for 2nd dose in the current maintenance cycle, I tried to comment my view.  It is 1:23 AM.  You owe me Tim Horton Dark Roasted coffee in small size.

Re: Delaying 2nd BCG for maintenance

I could not find studies about the impact of delayed BCG during maintenance, especially when a patient had completed 2 years of maintenance such as your case.  I was hoping your urologist will reduce the dosage so you can continue the scheduled 2nd dose.   Dr. Lamm and Dr. O’Donnell recommended reducing the dose reduction to reduce side effects.  The guidelines of Canadian Urological Association (CUA) says if side effects are minor and not persistent, continuing treatment by managing side effects by medication. In case of persistent side effects, CUA recommends either reducing the dosage or delaying the treatment.   I do not know why your urologist said NO  to reduce the dosage. But like I said, the doctor is the boss.

Anyway, I do not think delaying 4-8 weeks for 2nd BCG would not make much difference especially you had completed 2 years of maintenance

A predation of the efficacy can be measured by how much cytokines, especially interleukin 2 are produced by BCG.  Interleukin 2 is a hormone which stimulates our immune system to produce T-cells, which kill bladder cancer cells.  The picture shows the incremental amount of Interleukin 2 produced as the number of BCGs are administered.  Blue line is the maintenance treatment. The amount  interleukin 2 increases as the number of BCG is increased but it falls down when the 4th BCG is given.  We cannot give too much BCG as it becomes less effective. It is a balancing act not to give too little and too much. You already had received the 1st dose, so maybe the slope of the line becomes a bit flatter, but the slope after the 3rd dose will make the slope higher.  So, I would not worry much if you decide to delay 2nd dose as the impact is not much.

Re: The implication of having completed 2 years of BCG.

Yes, that is what Dr. O’Donnell replied to the question by a patient.  There was a video of a friendly debate by Dr. Lamm who is for 3 years maintenance and Dr. O’Donnell who is for 2 years maintenance.  I could not locate it.  When I find it I will let you know.

There was a study done in 2017, which checked 9 randomized clinical trials which studied the efficacy of 6 weeks induction only, + 1 year maintenance, + 1.5 years maintenance, +2 years maintenance, and 3 years maintenance.  The conclusion was Longer BCG maintenance therapy (such as 3 years) is not superior to shorter maintenance therapy (such as 1 year).  I recall one study I looked at had about a 2% difference in efficacy between 2 years and 3 years maintenance.

So, I think 3rd year maintenance is just icing on a cake.  So, I would not worry much whatever decision you make.  But, the decision is you and your doctor to make in the end.  After all, I am just a crime stopper lab technician.

Best luck.

• This reply was modified 1 year, 2 months ago by Nightingale.

[Tana]

Hi Joe- Of course – I am a curious person and I do like to know from the horses mouth so to speak in calling my urologist.

Ok so I woke up more sick today from the Covid even though it’s day 11. Weird because the first few days I felt fine even with a low- grade fever ( 100.04 ) . Though I compare it to my BCG treatment side effects I had the week before and Covid for me was easier/ more doable.

I  woke up feeling  too sick today and I made the decision to follow my intuition and call the short stay unit to cancel the BCG today even though apparently there’s no availability for number 3 the end of the month.
I am following my doctors recommendation that I delay the BCG. I don’t need to unduly risk to suffer worse side effects on top of Covid.
She said she will get back to me on the third appointment but that I’ll be going in the 18th  ( next week) for the second one. Even if that’s three weeks apart. I am hoping for the best.

Oh and haha- again-

Yes! I definitely will get you a cup of Coffee- soon as I can! A cuppa Joe!
I had no idea the information you are finding has been available.

Thankyou crime stopper lab technician!

[Joe]

Hi Tana,

I am sorry to hear that you did not feel well today.  I know a few people who got Covid.   One neighbor lost a sense of smell over a month.  She said she can taste, sweet, bitter, salty, but she can’t tell the difference from sweetness of apple from strawberries.  Another person has had symptoms lasted over a month too.   I hope you feel better soon.    Your immune system has been fighting the virus infection and BCG treatment  needs good immune  responses to be effective.

There is a paper published in 2020 by a urology department of Sorbonne University in France, which set a policy that if a patient got infected by COVID, BCG is delayed by 3 weeks.   To avoid the risk of COVID, the hospital also terminated maintenance therapy if the patient had already 1 year or longer maintenance, citing that though the European Association of Urology (EAU) guidelines recommends 3 years maintenance the optimal schedule for maintenance BCG remains unclear.      So, I think your intuition was correct.

best

 

 

 

 

[Nightingale]

Hello Tana,

I have been reading with great interest the on-line conversation between you and Joe.  I therefore wanted to take a moment and re-emphasise that which has been stated in Joe’s commentary; that your Doctor/Urologist has final say based on the intimate information available to them.  If you were to change to a new Doctor/Urologist, then they should have final say based on their access to all of your personal health data.  If you are looking for an ‘official’ second opinion, then that should come from a medical professional (doctor and or urologist) of your choosing.

I am glad to see that you used your best judgement and postponed your BCG treatment given your current health status.  In the end, nobody knows exactly how you feel except you, and I am glad you’re using your common sense and best judgement.

I am making this commentary in here because I want to make sure that anyone reading your’s (and Joe’s) post are mindful that we are not medical experts.  We are merely sharing our personal experience and in the case of Joe, what he has researched.  As Joe stated in his recent post on July 11, 2022 at 4:32 am “the doctor is the boss”; which is in bold.

All – thank you for your attention to this information.

My best,

• This reply was modified 1 year, 2 months ago by Nightingale.
• This reply was modified 1 year, 2 months ago by Nightingale.

[Joe]

Hi Nightingale,

When I said the doctor was the boss, I meant it sarcastically.  If a patient is being treated at so called “centre of expertise of  bladder cancer” and being treated by a urologist who is considered as an expert of bladder cancer, then I would be comfortable in saying we can follow what the doctor recommends. I say this because those urologists are likely up to date in what’s happening in the world of bladder cancers.  Those urologists are likely associated with teaching at the university. Incidentally,   many of them are on the BCC medical advisory and research board.  That is different for urologists working in local clinics and community hospitals.  Many of them are very busy handling many patients and running their own clinics.  I can tell from my own experience.  I have been treated at a local community hospital.  My urologist has many years of experience, perhaps longer than most of urologists on the BCC medical advisory board..  The urologist seems to be very busy at the office for consultation and and at the hospital for procedures, eg. cystoscopy.  When I observe the flow of patients, a patient gets max 5 minutes at the office visit and 5 minutes for cystoscopy.  The other thing I have noticed that my urologist does not always follow CUA guidelines’ recommendations.  Because the guidelines are recommendation and not enforcement, CUA will leave it the urologist’s discretion. This create disparities between Centre of Expertise of Bladder Cancers and local hospital in various area for the treatment for bladder cancers.  My treatment at a local hospital was a case in point.  I knew that CUA guidelines recommended single instillation of chemotherapy (SIC) post-TURBT all patients with presumed low risk NMIBC at TURBT and should be administered within 24 hours after endoscopic resection (LE 1; strong recommendation).   So, I asked my urologist about it just before I go into the OR for TURBT.  I was disappointed to hear from the urologist that “it used to be done but found not effective” because that could have made difference in recurrence rate though I have not had recurrence so far.   Then the pathology report stated that my tumor was G2 – Intermediate risk instead of LG or HG.  Pretty much all literatures and video used LG or HG except some literatures published in Europe said G1,G2 and G3.   This made me anxious about the treatment I was receiving – surveillance by regular cystoscopy was sufficient enough or undertreated.  Had I known as much about bladder cancer and its treatment when I had blood in urine as I know now,  I would have requested to my GP to refer me to the Centre of Expertise of Bladder Cancers, which happened to be only 40 minute to 1 hour away.  Also, I know the Centre of Expertise of Bladder Cancer tend to be equipped with more up to date treatment protocols.  For example. the centre I know has Bluelight cystoscope.  It is used during TURBT for some high risk patient so it can highlight tumors which would have been missed with a white light cystoscope.  I do not think many patients are aware of the existence of Bluelight cystoscope unless the patient read CUA guideline or do research on internet.  I trust that every urologist regardless where the urologist works, the centre of expertise or local community hospitals want to have the best outcome of his or her patients.  But, the reality is that the urologists in local community settings don’t have time to spend their time looking at various research papers, or engage in clinical trials as their counter parts in the centre of excellence.   What does it mean to the patient who is being treated at local community hospital?  It is not easy to ask for the 2nd opinion.  I find it that it is rather sensitive issue in Canadian setting.  I heard from a patient that when the patient had requested the 2nd opinion, the urologist just moved out from the consultation room.   I have noticed that getting the 2nd opinion, changing the doctor or hospital seem more norm in the US.  For example, Johns Hopkins Hospital is will known for pathology and they provide services for 2nd opinion.  It is covered by insurance.  In BCAN discussion from, I often see that people are suggesting a patient to send his or her sample to Johns Hopkins for the 2nd opinion.  As a matter of face, I know a patient in Canada had sent the sample to John Hopkins for the 2nd opinion.  I am not stating that it is better there or her.  But we need to be cognizant about the limitation of our universal healthcare system.  In BC, there are 1.8 urologists per 100,000 people.  In the US, there are 3.6 practicing urologists per 100,000.   As a patient, I want the diagnosis and the treatment which will give the best outcome.  I am sure that every patient wants the same.  Most patients probably choose to follow what their doctor recommends.  But, equally, many patients want to validate that the treatment they are receiving will give them the best outcome, mostly by Googling.  And others who are self advocate come to the discussion from like this forum.   Ultimately, it is the patient who needs to and has to make the final say to which treatment which the patient hopes to bring the best outcome.   This could be different from what the doctor recommends.  Hopefully, the patient has tools to understand what are differences and evaluate if the differences are major enough that the patient really needs to consider for the 2nd opinion or agree with the doctor’s recommendation or the difference are minor enough so the patient agrees with the doctor’s recommendation hopefully knowing what should be the next action when the result of the treatment is not the best outcome that the patient expected.   In this sense, learning about the treatments and patients experience from different reliable sources are crucial to help fill the gap.

best

 

 

 

 

[Nightingale]

Hi Joe,

I am glad you clarified that you were being sarcastic in your comment about the doctor being the boss.  I certainly did not read it that way.

As stated in my note to Tana.

“I am glad to see that you used your best judgement and postponed your BCG treatment given your current health status.  In the end, nobody knows exactly how you feel except you, and I am glad you’re using your common sense and best judgement.

I am making this commentary in here because I want to make sure that anyone reading your’s (and Joe’s) post are mindful that we are not medical experts.  We are merely sharing our personal experience and in the case of Joe, what he has researched.”

My best,

[Tana]

First : Yes this is all so personal- our individual journeys.

1. Thanks for posting that I will do what feels best for me as only I know how I feel. It was good my doctor recommended Delay BCG another week. The scheduler at hospital said no can delay and I almost went in feeling really sick but because of the research stating 2 1/2 years I’d be safe to delay I made the decision to stay home even though the scheduler did not like I did that. That was very important for me to have that knowledge otherwise I would have stressed myself with worry that I was messing up my treatment plan to keep BC free or I would have gone in to please the scheduler and possibly have had worse side effects.
   That decision made it a three week delay from the first treatment. I am appreciative of the postings of research from Joe and of the support and time he  spent listening to me. I am on my own; I needed to discuss with someone. E-mail works fabulous for my hard of hearing. I really needed support. My doctor doesn’t do e-mail and I am frustrated talking to him on phone and don’t get all he says.  Then I think of something else after I hang up.
   As for doctor is boss- I get it- they are not gods- they are human and don’t know everything and do the best they can. They certainly don’t have the time to chit chat with a patient like I needed at this time. Hence to get on the forum. Hence to get more information.
   I will give a personal experience about doctors who told my mom to put me into the Vancouver Jericho institution for the Deaf and hard of hearing : that there was no place in society for me and she didn’t get a second opinion- said No- was this her intuition? Though there were no resources in public school at that time. It was automatic to be put away instead. And There’s a class action suit against Jericho for abuse and sexual abuse. Saved by my moms intuition!
   So yes – research – information – sharing- on this forum is such a help.
   Thankyou –
   Cheers- Tana

[Nightingale]

Thank you very much for your feedback Tana!  We all try to do our best to help out where we can.  I am delighted to hear that you’re seeing value in all the information that is shared.  Keep well, and keep us posted!

My best,

 

[Tana]

Hi Joe:

I just reread your last post about being sarcastic about doctors being boss. I totally agree with your posting. Well written I do say. Especially the last paragraph- yes you pretty much have told it like it is.
I am recovering from two sets BCG I so wanted not to have. I’m so glad you posted that delay would be ok- like I said to Nightingale and like you said there’s not much hope in having a full on chat with my urologist. 1.8 uro in BC for 100,000 is insane. My urologist is in a teaching hospital but does that make him all knowing? That’s why I self advocate. Gathering info to keep in my back pocket in case needed for making a decision that is best for best outcome. Love the way you wrote all that. Seeing my mom suffer and die anyway after chemo made me question what I’d do. Still it’s not always an easy decision. When I was first diagnosed I did need the validation you spoke of. Urologist did hand me the BC Canada brochure which was my lifeline at that moment to make phone calls for support and most importantly to me- was to talk to a Non-doctor to get that validation that the protocol my urologist was putting me on was “right”. I was given your number and bless you , you called right away (or was it emailed)-  I don’t remember but I do remember feeling assured that I would be ok and that I could ask you questions.

When my urologist saw inflammation and red spots during a cysto last year he didn’t know what it was and suggested a biopsy. He actually asked me if I’d want that or just wait three more months for next cysto. That threw me for a loop what to do as I had no information so with a discussion right then on the table – I said biopsy which I had in 3 months which proved no cancer ; just that the BCG was too strong for me but when I asked if he could dilute it or I could stop he said no, we will continue. Of course I didn’t like that but I had no further information at that time to bounce his decision off  and simply accepted it not that I think he’s boss more like it’s a gamble. Then this set of BCG was upon me but with the eye surgeries delaying the first appointment and then I got sick  I just couldn’t go through with it until I read your postings which shored me up. The first BCG was not so bad! Yay! Then the second one was three weeks later also was not so bad.  But the third one was so much stronger – so it must build upon one another when close together. ( a week apart vs a 3 week space apart). I am so happy it’s done ✅. 🤩.
Oh , there was a bc patient I chatted with at hospital who just got diagnosed and was disappointed that he had no idea what was going on with his treatments-( in for his second BCG )- doc had no time –  what his grade is etc- he felt dismissed- no info – but got the brochure for bcc so I suggested for him to get on forum- also make a list of questions – call his doc office- etc.
Also Joe- interesting to note you were G2 not LG. I am happy for you that you have had no recurrence!
Where’s this Centre of Expertise of BC ( I’ve not heard of it).

Cheers all- Tana

[Joe]

Hi Tana,

It is so hot. This is only time I wish I could be in a hospital so I could stay in cool. 🤣.   The following is the answer to your question

Centre of Expertise of BCa.

Back in 2015, A multidisciplinary consensus committee defined the term centres of excellence for BCa in their  publication “Recommendations for the improvement of bladder cancer quality of care in Canada”.

In 2018, the committee changed it to centres of expertise.     In 2020, the updated consensus was published but  had not named which institution would fit the definition of centres of expertise. But in British Columbia, UBC/VGH should qualify to be named as centre of expertise in BCa.   Qualifications to be considered as a centre of expertise in BCa and the profile of the committee members are listed below.

The committee represented mostly by university affiliated hospitals in Canada, involving urologists/urologic oncologists, medical oncologists, radiation oncologists, a genitourinary (GU) pathologist, ostomy nurse, two patients representatives from BCC.

A level 1 centre of excellence in bladder cancer in Canada is best defined as a healthcare institution that provides comprehensive clinical care for patients diagnosed with all stages of bladder cancer, with the following requirements:

Availability of a team of health professionals dedicated to bladder cancer (dedicated defined as postgraduate training, majority of practice, or academic focus), including one or more of each of the following:
a. Urologic oncologist.
b. Radiation oncologist.
c. Medical oncologist.
d. Genitourinary pathologist.
e. Genitourinary radiologist.
f. Interventional radiologist.
g. Nurse practitioner or pivot nurse.
With availability of the following professional services:h. Colorectal, vascular, gynecologic, and plastic surgeons with expertise in reconstruction.
i. Intensive/critical care.
j. Stoma therapy.
k. Clinical psychology/sexology.
l. Social work.
m. Supportive and palliative care.
Provides guidance and support to a regional network of primary and secondary care urologists and other physicians.
Serves as a referral centre for complex genitourinary cancer patient care.
Provides care in an interdisciplinary fashion.
Establishes or adopts, and adheres to evidenced-based standards of practice and guidelines.
Conducts regular multidisciplinary tumour boards or conferences.
Provides timely access to state-of-the-art imaging.
Conducts clinical trial research in bladder cancer.
Publishes clinical and/or laboratory-based research in bladder cancer.
Measures and reports several indicators of clinical performance, including outcomes, compliance to guidelines, etc. that can be benchmarked.
Provides education to trainees, nurses, and continued medical education.
Promotes bladder cancer public awareness, early diagnosis, and prevention.
Actively participates in a nationwide network of bladder or genitourinary cancer centres of excellence and in patient groups.
The centre manages greater than the annual minimum caseload in the following:Radical cystectomy: 25.
Continent urinary diversion: 5.
Radiation-based definitive treatment:

The committee members are representing following institutions.

1Department of Urology, McGill University Health Centre, Montreal, QC

2Division of Urology, University of Montreal, Montreal, QC

3Division of Urology, University of Ottawa, Ottawa, ON

4Departments of Surgery (Urology), Princess Margaret Cancer Centre and the University Health Network, University of Toronto, Toronto, ON

6Division of Urology, Western University, London, ON

7Division of Radiation Oncology, University of Ottawa, Ottawa, ON

8Division of Urology, University of Alberta, Edmonton, AB

9Department of Urologic Sciences, University of British Columbia, Vancouver, BC

10Division of Medical Oncology, University of Alberta, Edmonton, AB

11Division of Urology, Dalhousie University, Halifax, NS

12Departments of Medical Oncology, Princess Margaret Cancer Centre and the University Health Network, University of Toronto, Toronto, ON

13Department of Pathology, McGill University Health Centre, Montreal, QC

14Departments of Radiation Oncology, Princess Margaret Cancer Centre and the University Health Network, University of Toronto, Toronto, ON

15Division of Urology, University of Manitoba, Winnipeg, MB

16Division of Urology, Laval University, Quebec City, QC

17Division of Urology, McMaster University, Hamilton, ON

18Division of Urology, University of Calgary, Calgary, AB

19Department of Urology, Queen’s University, Kingston, ON; Canada

 

 

[marysue]

Hi Joe:

I’ve read through this crazy amount of information and give you a heartfelt thanks for finding this out and posting it.  My first two rounds of BCG were OncoTice although I’m not sure where from and now I’m receiving the new Verity BCG.  My first two diagnosis in 2008 and 2010 were TaG3 (high grade) papilliary type tumours.  This time around in September 2022. I had CIS only but it too, was high grade and my uro is concerned for recurrence and potential progression.  I’m rather confused after reading your post as to whether the Verity BCG is the right drug for my situation but that being said I believe it is what is available in Alberta.  I live in Calgary.  I only learned about the different BCG strains after starting treatment.

I have just decided to go with the flow and have whatever BCG is available and get through the next lot of treatments.  Since I’m having a noticeable response in terms of side effects, I’m hopeful that it will do its job and I will be cancer free.  Thanks once again for doing this research.   ((((HUGS))))

 

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