BCG and Bleeding

[JazB]

First off I just want to thank everyone on this forum for all the support that you provide for everyone going through this disease.

I was diagnosed with non-muscle invasive bladder cancer in July 2021. The exact stage and grade of my cancer was TAG3. I had my initial TURBT in July 2021 and a second TURBT the following month. I started my initial 6 BCG treatments in October 2021 and barely had any side effects. I really didn’t have any side effects until I started my second round of maintenance BCG treatment (treatments 10, 11 and 12). The side effects included urgency and frequency and blood in the urine which lasted for about 2 days, After 2 days I felt fine and returned to work. At my last cystoscopy my urologist noticed a red spot which he wanted to biopsy. So I was scheduled for a biopsy a few weeks later and thankfully it came back as negative for cancer but showed quite a bit of inflammation in my bladder caused by the BCG.

So last week I had my 16th BCG treatment and had similar side effects as before. But then this past weekend I had my 17th treatment and the side effects have been quite severe. The frequency and urgency has lasted all week but the bleeding has not stopped. I called my urologist yesterday and he indicated that some people eventually can’t tolerate BCG due to the side effects. My last treatment of this round was scheduled for tomorrow but my urologist has now delayed it until after the bleeding stops. Has anyone else had bleeding that lasted for several days? Were you able to continue on with your BCG? I’m concerned that I’m not going to be able to complete the BCG due to the continued bleeding from my last treatment. I have completed 17 out of the 27 treatments scheduled over the 3 year period.

[marysue]

Hi JazB:

Welcome to the wild and fuzzy world of BCG treatments.  I have had 28 BCG treatments all told since I was first diagnosed way back in 2008.  In 2008 I had a set of 6 post TURBT.  My second set was 15 treatments (a second set of 6 followed by 3 sets of maintenance) in 2010-2012 after a bladder cancer recurrence in 2010.  I was clear for 12 years and lo and behold BC came back to haunt me last September.  I had my third TURBT and my uro recommended another set of 15 treatments – a set of 6 followed by 3 sets of 3.

The first two sets of BCG were challenging but I mainly had flu like symptoms of fever, chills, fatigue, muscle/joint pain etc.  I only had what I would term bladder irritation which cleared up within a few days of finishing treatments.  I did have a small amount of blood at the end of my second round of treatments in 2012.

However this time around it has been a completely different story.  I had Epirubicin instilled in my bladder immediately post TURBT which caused massive inflammation, bleeding and a Group B Strep infection.  October/November 2022 were not fun.  I did heal up enough to start BCG at the end of November.  I got through 5/6.  I did have a little bit of bleeding after #5 but what has been the worst for me was the pain from the inflammation.  After I had the 5th treatment I was doubled over in pain by the time I got home from the hospital.   It took a lot of heat and massive pain killers to get the pain down to a manageable level. I had a cysto on March 16th and no cancer was present but there were two red spots of inflammation on the front wall of my bladder.  I did get the okay to proceed with the first set of maintenance the following week.  That was not a smart move.  I managed the first treatment for 1 hour and 20 minutes.  The second treatment was another story. I did do it for 1 hour and that was enough.  I only had traces of blood in my urine but again the pain was unbearable so I cancelled the last treatment.

I am supposed to go for my second round of maintenance starting on June 23rd but at this time I’m still undecided about whether I will do it or not.  The situation I’m weighing is do I continue on with BCG and risk more pain and bleeding and potentially suffer long term damage to my bladder or do I skip the next set of treatments to give myself longer to heal and potentially pick it up again in September when I see my uro for my next cysto and what risk am I at for recurrence if I skip the next set of treatments?

I was with a different uro during the first two rounds with bladder cancer and I had a cysto between each set of BCG but my current uro feels I can go 6 months before the next one.  I had asked for but have not had a response yet about moving up my cysto date to see what kind of shape my bladder is in before embarking on the next set of BCG.  I’m reluctant to attempt anymore BCG until I’m sure that all the inflammation is healed.

I’m 8 weeks out since my last BCG treatment and still experience some occasional urgency, pain and discomfort.  Not a lot but it is enough to disrupt my routine.  I will be making a final decision about the next set of treatments in the next week or so.

For yourself I recommend having a good heart to heart with your uro about the bleeding.  I do know of some people that did have to discontinue treatments for a time.  Some stopped altogether.  Some were switched to another drug like Mitomycin C or the new treatment which is a combination of Gemcitabine and Doxatacel.  Some do better with that than BCG.  That would be worth asking your uro about.  I would also ask about what he feels your level of risk for recurrence is if you discontinue treatments altogether.

As mentioned for myself, if I do stop until September, I will be having a discussion with my uro at my next cysto unless he reaches out beforehand.  If I’m completely healed and clear of cancer in September, I will revisit the idea of another round of BCG at that time.  I hope that this helps.  Best Wishes. (((HUGS)))

 

[theweb]

Hi guys – I am a 64 year old male, new to this forum and its my first post. Sorry we all have to meet this way.

I was recently diagnosed with high grade non-invasive bladder cancer with granular features. I’ve had two TURBTs which were somewhat successful in removing the large tumour, but still some cancer cells showing up in pathology #2. Currently waiting on doctors to make a plan of action for me (originally pathology #1 showed 5% signet-ring cell cancer, but pathology #2 seems to have changed to ‘granular features’).

Doctor asked me if I wanted to have bladder removed (apparently gold standard treatment) or roll the dice and opt for BCG treatments in the hopes it treats the cancer. After doing some research and reading this post and what JazzB has gone through with his BCG protocol, I guess my question is why would anyone with high grade cancer opt for BCG, even in the early stages? Seems like BCG in and of itself is a nasty experience with untold complications, and for the most part seems just to delay the inevitable. Wouldn’t just removing the bladder and having a stoma be the logical choice?

My apologies if this question is dumb, just early stages of me feeling my way around this nightmare and trying to make sense of options being presented to me.

xo

David

 

 

[marysue]

Hi theweb:

I’m sorry that you have been diagnosed with bladder cancer as well.  It is not an easy journey no matter which road you are on.

You have asked a very good question about BCG treatments versus a radical cystectomy surgery. And I might add – under no circumstances is any question a dumb question.  Bladder cancer is a huge learning curve with all the lingo, treatment options, bumps and curves in the journey etc.  And yes, it can take considerable time to get your head around it all and for it to start to make some proper sense.  We have all been where you are.  Please keep asking questions.  You need to do this to become an informed patient.  When you are fully informed that is when you can make the best decisions for your health and well-being.

Noone has the exact same experience because of our uniqueness as human beings.  You can have two people with the exact same diagnosis and be recommended the same treatment protocol.  One may have success and the other not.  Research is still ongoing as to finding out why that is so.  People with some other types of cancers like breast cancer can often have a more personalized treatment plan based on genetics, hormones or whatever.  This type of technology is still in the works for bladder cancer.

I’ve been dealing with bladder cancer since 2008. The first time I had a TURBT followed by 6 BCGs.  I had a minor recurrence in 2010 and had a second TURBT followed by 15 BCG treatments. I was clear for 12 years until September 2022 when a tumour was discovered in the lower right quadrant of my bladder.  I had not passed any blood like before so I had no idea of the recurrence.  It was a lucky catch thanks to regular cysto checks.  I had a third TURBT in October 2022 with an infusion of Epirubicin immediately post op and am now in the middle of my third round of BCG treatments.  The reason for the Epirubicin this time (it is a chemo drug) was that we were hoping it was going to be a one and done and that would be it outside of regular cystos. But when the pathology came back my uro recommended the BCG as well.

When I had my first recurrence in 2010 I was even more terrified than when I had the original diagnosis.  I did briefly consider bringing up the topic of doing a radical cystectomy with my urologist figuring like you if I was going to have continual recurrences which would mean frequent surgeries and continual BCG treatments it might be best just to have the surgery, but when I learned exactly just how big the surgery was and how minor my recurrence was I decided I would put my big girl pants on and power through the BCG treatments.  That was then.  As mentioned, it did get me 12 clear years.  Now, having been given a different type of BCG I have reacted in a much more complex way.  Having the Epirubicin post op this time did not help matters.  I had massive inflammation and a Group B Strep infection post op/treatment which did not set me up well for going into BCG treatments.  The current treatments have caused a lot of pain and inflammation.  I’m due to go for another round of BCG at the end of June but am not sure yet if I will do it because I’m still having issues from the last go round in March.

All that being said, I’m still glad that I have fought to keep my bladder.  Will I need an RC in the future?  I certainly hope not and so far my uro has not put that option on the table. If the cancer keeps recurring in the future I may be the one to bring it up because this time around I had CIS (carcinoma in situ) which is a flat lesion tumour and is more aggressive than the usual papilliary tumours (the ones that look like pieces of cauliflower).  Despite all this, I have been fortunate and been Stage 0 all three times.  This stage is when the cancer is just on the very surface of the bladder wall and not gone anywhere.

If you are in a situation where your uro has given you a choice it will require some serious thinking and most likely a further conversation.  I would ask more in depth about what is meant by signet-ring and granular features and does having these features make the cancer more aggressive than average?  I have never heard of these terms before and would be curious to know what they mean.  I have had conversations with other bladder cancer patients who were given a choice and in many of their cases it was because of the stage and aggressiveness of the bladder cancer that they opted for the radical cystectomy.  Stage 2 is when the cancer is in the muscle wall and the usual recommended treatment is surgery to remove the bladder and patients may or may not have chemo either before or after the surgery.  Stage 1 is when the cancer has just gone below the surface into the first layer called the lamina propria but is still classed as non-muscle invasive.  If you are at this stage with bladder cancer it can be a bit of a roll of the dice with BCG treatments.  BCG does have some success with Stage 1 but you have to keep in the back of your mind that if the cancer does recur during  or post treatment it may or may not recur at a more advanced stage.  So the rub is do you try BCG treatments in the hope for success and keep your bladder or do you go ahead with a radical cystectomy and be more sure of getting rid of the cancer once and for all?

People really vary on their approach and thinking with these choices.  Some want to fight tooth and nail to keep their bladders and will put up with the inconvenience and discomfort of TURBTs and BCG treatments whereas others think more like what I just mentioned – do the surgery to get it over with and maybe have a better quality of life.  As mentioned this will require more thinking on your part to see which option feels right for you.

The other thing to ask your uro if it has not been brought up yet, is if you are going to consider going for a radical cystectomy what kind of urinary diversion should I get?  I don’t know if you have read anything about this yet but the 3 options that are offered in Canada are: 1) The illeal conduit (outside pouch with the stoma) 2) Neobladder which is an internal version created out of some of your intestine and 3) The Indiana Pouch which is an internal version with a pouch created out of some intestine but you also have a stoma with this as well and use a catheter to empty the pouch.  Not everyone has a choice of diversions.  It depends on your personal situation with bladder cancer and any other issues that you may be having.  Not all surgeons are trained to do all diversions.  If you do opt for the surgery and have a choice about the diversions you can contact Bladder Cancer Canada and ask to have conversations with peer support volunteers who have had that surgery.  They can give you the low down on their experience and what the good and not so good is.

I hope my information has helped you a little bit.  Take care and stay in touch.  ((((HUGS))))

[Nightingale]

Hello theweb,

Thank you for posting your situation in the Forum.  MarySue is a long term member of the Forum and provides very good information based on her personal experience and knowledge.

I wanted to offer up that on Thursday June 22, we have a Support Worker with the VON and her dad joining our Support Group.  We will be having a discussion about the treatment her dad received and how his bladder was preserved even though he had High Grade tumour.

I am not sure timing wise if this would help, but if you can, you’re welcome to join our Support Group via Zoom or if you’re in the Hamilton area in-person.  Please let me know.

The other alternative is for me to set up a call with you and her Dad after we have him officially listed as a peer-to-peer support volunteer in Bladder Cancer Canada.

My best,

[Joe]

Hi JazB,

TaG3 is risk stratified as intermediate risk if it is a single site and less than 3 cm, and no CIS involved.   You had the 2nd TURBT, which urologist resected wider and deeper including connective tissue (T1) and muscle tissue (T2,et.), which I assume the pathology reported negative.  This confirmed that you had G3 (high grade) but did not  progress through the lining of bladder into the connective tissue and further.  If that was the case, you had tumor with intermediate risk of recurrence and  progression.  There are three guidelines we usually  refer for non muscle invasive bladder cancers, i.e. Canadian Urology Association (CUA), American Urology Association (AUA), and European Association of Urology (EAU).  The recommended treatment for intermediate risk non muscle invasive bladder cancer is either one year of intravesical chemotherapy or one year of intravesical BCG.

CUA says

When BCG is administered for intermediate-risk non muscle invasive bladder cancers, induction followed by one-year maitenace is recommended (LE1 1, strong recommendation)

AUA says

Consider administration of a six week induction course of intravesical chemotherapy or BCG ( Moderate Recommendation; Evidence Strength : Grade B)

If patient who completely responds to an induction course of induction BCG, a clinician should consider maintenance BCG for one year, as tolerated (Moderate Recommendation; Evidence Strength: Grade C)

 

EAU, which lists various studies which they referred to in order to make recommendations, says  as follows

Three-year maintenance is more effective than one year to prevent recurrence in patients with high-risk tumours, but not in patients with intermediate-risk tumours.   Level 1A

In patients with intermediate-risk tumours (with or without immediate instillation), offer one-year full-dose Bacillus Calmette-Guérin (BCG) treatment (induction plus 3-weekly instillations at 3, 6 and 12 months), or instillations of chemotherapy (the optimal schedule is not known) for a maximum of one year.  The final choice should be made in a shared decision-making process with the patient, reflecting his/her risk of recurrence and progression, as well as the efficacy and side effects of each treatment modality   Recommendation strength is Strong.

All three guidelines are saying its okay to stop BCG treatment after 6 weeks induction plus, 3 weeks maintenance at 3, 6, 12 months total of 15 BCG treatment.    So, from the guidelines point of view, which are based upon large clinical studies, you already received sufficient amount of BCG treatment if your initial diagnosis was diagnosed as TaHG, single site and less than 3 cm.

 

 

 

 

 

 

[JazB]

Thank you so much everyone for the thorough and detailed responses. I really do appreciate the information that you provided.  A bit about myself… I was 40 years old when diagnosed in 2021 (non smoker). The last thing I ever expected was a cancer diagnosis especially at my age.  I believe I was considered high risk to re-occur because there were multiple tumours – there was a 2cm tumour and a couple of tiny tumours adjacent to the 2 cm tumour. TAG3 meant there was no invasion of the lamina propria which meant that it was caught early and that was the good news. The bad news was that it was high grade.

Anyhow overall I did extremely well with my BCG instillations. As I mentioned earlier there were barely any side effects with the initial 6 treatments. I really started noticing the side effects when I started my second round of maintenance treatment. I am now on my 4th round of maintenance treatment (16, 17 and 18). I was to have my 18th and last treatment of this round this past Saturday but it has now been delayed because I am still seeing blood in my urine. This has freaked out me out a bit because I never saw blood for more than 48 hours in any of my previous treatments.

I think I have just become very sensitive to the treatments but am hopeful the bleeding will stop and I can go ahead with the last treatment of this round. Then hopefully I can rest my bladder for 6 months until the next round of treatments. The good news is that I literally just had a biopsy 7 weeks ago due to red spots that my urologist wanted to check and the pathology showed lots of inflammation but no re-occurrence of cancer. I am thinking the bleeding is a result of the excessive inflammation in my bladder but I won’t lie it is not always easy to stay positive and think the cancer has returned. I have my next cystoscopy scheduled for the end of June.

[theweb]

Hi Marysue – thank you for your detailed response. I need to apologize to JazzB for hijacking his thread with my comments. I should have started my own separate thread.

I’m in Sarnia and my urologist seems to be pushing me towards an RC. He did a fantastic job with my two Turbts, as well as fast tracking me through the entire process (less than 6 weeks from initial cystoscopy to Turbt #2,  including a CT scan and MRI in between to boot). I’m in Sarnia ON at Bluewater Health, but if I opt for an RC they would refer me to London Health Science. However, I have a connection to Toronto and would most likely opt for RC at Mt Sinai if I go that route (this is my third go round with cancer. I had a radical prostatectomy at Mt Sinai in 2012 (prostate cancer – Gleason 8) as well as spindle cell sarcoma (low grade) on my left arm in 2021.

I was able to get results of my Turbt#2 pathology and it reads:

DIAGNOSIS

• Bladder Tumor – Papillary urothelial carcinoma. HIGHGRADE. Noninvasive
• Urothelial carcinoma in situ also identified
• Detrusor muscle identified which is uninvolved by tumor
• Histiocytes and foreign body type multinucleated giant cells identified

SYNOPTIC REPORT

• Tumor Site: Not specified
• Histologic Type: Papillary urothelial carcinoma, noninvasive
• Tumor Extent: Noninvasive papillary carcinoma. Flat carcinoma in situ
• Lymphovascular Invasion: Not identified

 

Apparently there are updated pathology reports from Turbt #1 & 2 as they were sent to London for second opinions. I need to get my hands on those.

I have a June 8 Zoom call with my urologist to update me on next steps after his meeting with a group of doctors who are discussing my particular case.

The other complication I have is that I’m being told that the scar tissue from my radical prostatectomy might be a challenge for surgeon if I opt for RC.

I really don’t want to lose my bladder, but I also don’t want to spend the rest of my life enduring one BCG after another, along with multiple scopes and more TURBTs. Using my father as an example, he seemed to live a normal life with his bag/stoma and would always joke about having his bag and seemed to adapt, at least it appeared that way outwardly.

David

[theweb]

Hi Nightingale – thank you for the opportunity. I would love to sit in on Zoom call or participate in person. Please provide further details. Thanks again:)

[Author]

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