Post BCG Induction Symptoms – Lack of Information

[Marian TS]

In the fall, my husband was diagnosed with a high grade bladder cancer. While it was a bit father into the bladder wall than the surgeon would have liked, thankfully, it had not gotten into the muscle.

One of the really frustrating things about this whole journey is the lack of information. He was sent home from the hospital after the TURBT with a pamphlet that had very little information. Forget trying to e-mail the surgeon with questions, sometimes you get an answer, sometimes nothing.  We could have avoided a whole lot of stress if we had a better idea of what to expect post surgery.

He finished his 6 week BCG induction 3 weeks ago. The side effects during the treatment were not too bad – he was very tired and had some bladder discomfort, but nothing too bad. Now 3 weeks later, he is experiencing some bladder  discomfort- crampy, achy periods, which come and go and some he can pee a lot and sometimes not too much. Is this normal? I have read that caffeine can cause bladder irritation and I imagine that alcohol would do the same – is that correct? We are hesitant to go searching on the web for this info, as we end up down too many scary rabbit holes of information and misinformation.

We are now waiting for next step in the process, which is a cystoscopy on March 28th to see if the BCG worked and that the tumour has not come back. Some other caregivers have mentioned the stress of waiting and worrying while you wait. That seems to dominate our lives now.

I am so thankful that Bladder Cancer Canada is here, such  a great resource and so helpful to talk with those who have been or are going through the same thing.

[Nightingale]

Hello Marian TS,

I am glad you found our site and I hope members who have gone through what your husband is experiencing will respond soon.  I myself am a 12-year survivor.  I caught mine very early; it was low grade non-invasive.  Mine came back three times and finally after the third time, my surgeon was in the middle of doing my cystoscopy when he asked me if I was ok if he could laser it.  I said ‘yes’ and the rest is history.  I never received any BCG treatments, as it was determined it was not necessary.

I can understand fully how worrisome this situation can be, but I can also tell you a lot of folks both here in the Forum, as well as in my Support Group (that I facilitate); who are survivors.  Try not to worry.  The great news is it was caught and is being treated.  To help the bladder heal, I would personally stay away from coffee and alcohol.  I personally switched to drinking a lot of green tea, the loose-leaf kind.  I also added natural anti-oxidants to my diet, such as blue berries in my cereal for breakfast, and strawberries for desert.  Every little bit helps.

Marian, you and your husband are welcome to join my next Support Group meeting via Zoom, which takes place on Thursday Mar 24th starting at 6:30 PM Eastern.  Conversely, we have Peer Support volunteers who are available to talk with you and your husband 1:1 to share their experience and to try and answer any questions you folks might have.

Let me know which method you prefer, or you can choose both.  Feel free to ‘private message’ me if you like.

My best,

 

[Marian TS]

Hi Nightingale.

Thank you so much for your reply! We are reducing caffeine and alcohol and relaxation exercises seem to help as well.  I will speak to my husband and see what he would like to do.  I think that it might be helpful for him to hear about the experiences of others who have gone through BCG to see if what he is experiencing is “normal”.

Take care,

 

[marysue]

Hi Marian TS:

I’m 10+ years out from my last BCG treatment in January 2012.  I had 21 treatments over a course of 3.5 years.  I had a set of 6 (once a week for 6 weeks) Oct-Nov 2008 and then after a small recurrence in 2010 I had a second set of 6 followed by 3 sets of 3 (once a week for 3 weeks) 3,6, and 12 months from second set of 6 for a total 15 from Nov 2010 – Jan 2012. My side effects were mainly flu like with fatigue, headache, some chills, muscle and joint pain.  I had some bladder pain and irritation with the very last 4-5 treatments. The intensity of the other side effects increased as well.  I also experienced “chemo” brain where I felt very drugged and digestive upset.  The symptoms wore off after treatment.

I too, had very little information about BCG in the beginning.  In case you do not know BCG is an attenuated or altered version of the TB vaccine and has been used as treatment for non-muscle invasive bladder cancer for decades.  The idea behind the treatments are to stimulate the body’s immune system to recognize bladder cancer should it be present and then the immune system will destroy the cancer and help prevent recurrence.  Statistics put it at about 70% successful with 6 treatments and more than 80% with more than that.  That was the info that my first uro gave me in 2008.  The info could have changed by now.  What I have observed with being part of the discussion forum is that personal responses to the drug seem to vary but the majority do seem to obtain some measure of success.

A lot of us, including myself have found that caffeine does irritate the bladder and stay off it post surgery and during active BCG treatment.  Like Nightingale, I drink mostly green tea for its health benefits.  There is some unsubstantiated research that suggests it may help prevent cancer including bladder cancer.  The best thing he can do for his bladder is continue to drink lots of water.  It will help flush out any remaining BCG in his system and help heal the irritation in his bladder caused by the BCG.  BCG does sometimes inflame the bladder wall and that is what causes the cramping and pain.  Keeping your urine diluted by drinking a lot of water will help with that.  I also suggest a heating pad to deal with any bladder pain/spasms.  If the problem persists or he experiences a lot of bleeding when urinating I strongly recommend that he get in touch with his urologist.  The doc can prescribe meds to help eliminate the issue.

The usual routine with BCG treatments is to do a set of them and then have a cystoscopy exam around a month after finishing treatments.  This as you already know is to check to see if the treatment is working and if there is any recurrence of cancer.  Many people do a set of 6 treatments followed by the 3 sets of 3 but each urologist varies in their protocol and will often vary the treatment for patients based on the type of cancer and their personal situation.

I also suggest that your hubby look into taking some extra Vitamin D.  I was advised to as it is supposed to help with the effectiveness of the BCG treatments.  I take 2000IU per day. Nightingale might be able to locate an earlier post by Jack Moon one of BCC’s cofounders.  Jack posted a research article from a place in Rochester USA about this topic.

To combat the stress of waiting for tests, results, etc.  I tried my best to keep busy and do some fun things to take my mind off the situation for a while.  While waiting for my first test results post TURBT, my hubby took me out of town for a few days to relax by the beach in Kelowna.  I was still recovering so I just put my butt on the sand and relaxed in the sun and lost myself in a good book for  awhile. It gave my mind a real break and when I came back to Calgary, I felt more able to deal with things.

I suggest as you and your hubby are able, make a list of your questions and post them here and/or attend Nightingale’s meeting on the 24th.  I also recommend speaking with someone who has done the BCG route. Please feel free to private message me if you wish.  I hope my info helps.  (((HUGS)))

 

[Marian TS]

Hi  Marysue. It really does help to hear about what others have experienced, thank you so much for sharing.
I attended the BCG 101 seminar sponsored by Bladder Cancer Canada, so now I have a good idea of the “technical “ aspects of how it works. As you said, responses to it and side effects will vary person to person.

We are both taking extra vitamin D now and have cut back on caffeine and he has upped water intake a lot.  Also, good advice about trying forget about cancer for a few days. We have declared some “cancer free” days and it feels so good to have a little bit of normal. Or as normal as we can during Covid.

Thank you again and take care. Hugs back to you.

[petertg]

Hi Marian,

I had four tumours removed from my bladder , TURBT, October 30, 2019. Like your husband I left the hospital with a pamphlet in had. I knew nothing. Then, Bladder Cancer Canada saved me. You are in the right place.

This coming Monday, March 21, 2022, I will have BCG treatment #21. If all goes well I will have two more rounds of 3 in the next 12 months to reach the goal of 27. This is the gold standard for non-muscle invasive High Grade bladder cancer. All dependant of course that treatments are effective. Mine have been.

It is very easy to feel alone on this journey. My only contact with my Urologist is a cystoscopy every three months. Not once has anyone from his office or  the cancer treatment clinic called to ask how I am doing. This hugh support and information void has been more than filled by this BCC website and contact with BC survivors.

This BCC site has wonderful resources. On the bottom of the main page you will find terrific patient handbooks. Also you can watch past webinars. One you might like can be accessed on the main page by tapping the three horizontal bar icon beside the search bar. Tap on Facing Bladder Cancer and then Webinar Recordings. Scroll down to “Non Muscle Invasive Bladder Cancer, A Spectrum of Disease with a Spectrum of risk.” There are also other valuable past webinars to be found here.

We are with you. Never feel alone.

Peter

 

[petertg]

Hi Marian,

I had four tumours removed from my bladder , TURBT, October 30, 2019. Like your husband I left the hospital with a pamphlet in hand. I knew nothing. Then, Bladder Cancer Canada saved me. You are in the right place.

This coming Monday, March 21, 2022, I will have BCG treatment #21. If all goes well I will have two more rounds of 3 in the next 12 months to reach the goal of 27. This is the gold standard for non-muscle invasive High Grade bladder cancer. All dependant of course that treatments are effective. Mine have been.

It is very easy to feel alone on this journey. My only contact with my Urologist is a cystoscopy every three months. Not once has anyone from his office or  the cancer treatment clinic called to ask how I am doing. This huge support and information void has been more than filled by this BCC website and contact with BC survivors.

This BCC site has wonderful resources. On the bottom of the main page you will find terrific patient handbooks. Also you can watch past webinars. One you might like can be accessed on the main page by tapping the three horizontal bar icon beside the search bar. Tap on Facing Bladder Cancer and then Webinar Recordings. Scroll down to “Non Muscle Invasive Bladder Cancer, A Spectrum of Disease with a Spectrum of risk.” There are also other valuable past webinars to be found here.

We are with you. Never feel alone.

Peter

 

[Marian TS]

Hi Nightingale.

I hope that you are having a nice weekend. It is kind of grey and cloudy here in Toronto, but spring is on the way!
I tried to “private message” you, but I am not sure that the message actually went. 🙂

I had some questions  about your support group and how it works. How many people attend? If my husband can’t attend, could  I do so myself? Do you use Zoom?

Thanks so much and take care,

Marian

 

[Marian TS]

Hi Peter.

Thank you so much for sharing your experience. It really does help us feel that we are not alone in this.
The medical profession seems to do well treating the disease, but not caring for the person. You are right, I have found so much more information on the Bladder Cancer Canada site , way more than the doctors have ever provided. The BCG 101 seminar was really helpful.

I hope that all goes well with your last two rounds of treatment.
Thank you again and take care.

Marian

[Nightingale]

Hi Marian TS,

Thanks for alerting me to the private message you sent me in here.  We’ve been having some challenges with the emailing from the system and I see you did send me the message, but I never got notified by the system.

My Support Group is based out of Hamilton and we use ZOOM.  You can definitely attend as a Caregiver if your husband is unable to participate.  I will add you to my list.  The session is this Thurs Mar 24th starting at 6:30 PM, and I typically send out the Zoom information a day prior to, so on Wed watch for it.  We average from 8 to 12 people on a monthly basis since we switched to Zoom due to Covid.

I hope this helps, if you have any further questions, just post them in here and I’ll respond.

Thank you,

 

[marysue]

Hi Damjan:

First off you need clarity on exactly what your husband’s actual diagnosis is.  There is a very big difference between Ta Low Grade and Ta High Grade or T1 High Grade.  Stage Ta means that the cancer is very superficial which is what I had but T1 means that the cancer has gone a bit below the surface into the next layer called the lamina propria.  Bladder cancer that has gone that far is not yet muscle invasive  but it has the potential to do so. T2 or muscle invasive bladder cancer can potentially be life threatening.

The pathology report would reveal the actual results of stage and grade plus the type of bladder cancer. A patient can have more than one type of bladder cancer present and if there are multiple tumours you can have a mix of low and high grade.  The most common type of bladder cancer tumours are the cauliflower shaped ones that are called urothelial carcinoma and those can be high or low grade and vary in size and stage.  The second most common bladder cancer is a flat lesion called Carcinoma in situ  or CIS for short, which is always high grade and little bit more aggressive than the urothelial carcinoma.

You and your husband have the right to full disclosure of the details of the pathology report so if you haven’t already done so I’d be asking the doctor for a recap of the details. You and hubby have the right to know about all treatment options for a particular diagnosis and the pros and cons of each.  You have the right to ask for a second opinion not only for the pathology report but any recommended treatment protocols going forward. It is frustrating to have two doctors with two different opinions on the diagnosis because it doesn’t give you clarity about the best decision going forward.  Asking for a second opinion is also a valid reason when a patient is not comfortable with their current provider.   From the sounds of it, your hubby’s current doctor has not done their due diligence to win your trust and confidence.  Dealing with bladder cancer is stressful enough without the stress of not being confident with your doctor.

A diagnosis of low grade Ta bladder cancer follow up can vary from as you mentioned the watch and wait to actually being prescribed a regime of BCG or another drug. It depends a lot on the patient’s situation and what the doctor feels their risk factors are.  High grade Ta is another story.  The majority of cases of high grade Ta bladder cancer patients do undergo a regime of BCG or another agent if they can’t tolerate the BCG because the diagnosis of high grade means that the cancer has a higher risk of progressing especially if it should recur.  BCG treatments or treatments with another agent help prevent recurrence and progression.  Since bladder cancer has a very high recurrence rate this is very important.  Treatment protocol for T1 bladder cancer can be either a regime of BCG or another agent or if the cancer is serious enough in certain circumstances a urologist might recommend early bladder removal.

Getting clarity on you hubby’s actual diagnosis will make it much easier to decide about what the treatment protocol should be going forward.  BCG treatments or treatments with other agents can be challenging.  I know because I’ve done 28 BCG treatments in total and it was not fun.  However, despite everything I’m glad I did what I did because to date I still have my bladder.  The usual side effects of BCG treatments are fatigue, flu like symptoms of low grade fever, chills, muscle/joint pain and some bladder irritation.  If side effects become an issue there are options – switching out to another drug, reducing the dose of BCG, changing up the treatment schedule to name a few. And yes, the side effects can be cumulative but that being said, the type, amount, and duration of side effects varies from person to person.

As a peer support volunteer, I’m often asked that question, “How bad will my side effects get?”  Not having a crystal ball, I obviously can’t answer that (I wish I could) but I always mention what I said above, that the side effects vary from person to person and you won’t know until you do it.  Not the most comforting thing to hear I know, but it is what it is.  If after all things considered your hubby is recommended to do BCG and he doesn’t want to, he needs to ask his doctor about the risks of recurrence and progression in his situation should he refuse treatments.

I hope this information helps.  Best Wishes going forward.  ((((HUGS))))

[DamJan]

Hi Marysue,

Thank you so much for your response! We do have both pathology reports. The first one says, Non-invasive, high grade and then the second, most recent one says, non-invasive low grade. He was fully prepared to start treatment, but with this new diagnosis and lack of clarity, he would like more information. We are just stuck trying to find another doctor as the one here says she has no time for appointments. I suppose we go back to our GP and try to get a referral to another doctor. At this point, we have only ever seen one doctor for 10 minutes after his second turbt and she was the one that said she would not recommend treatment, but since the first doc recommended it, she thought we should do it. Honestly, it just makes no sense.

But, we will push for a second opinion and more information. He also has a CT scan in april so I think we are hoping to see what it shows before any final decision are made. Very hard to know good docs from bad. And, again, as we are new to cancer it’s all a fresh start.

Again, thank you so much for all your information!

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