BCG treatment – start date and the process

[CocolinaPN]

Hi – my husband was diagnosed with bladder cancer in early Dec.2021. We had 2 TURBT procedures done – one in Dec.21 and one in Jan.22. Since the 2nd procedure, we have not heard anything back from the urologist office or anyone else. Before the 2nd TURBT procedure, we were told that he needs at least 6 weeks before he can start the BCG treatment. Since then there is silence, we called the doctor’s office several times but we have not been able to speak with the doctor and/or find any information on when the treatment will start and where. Did anyone else experienced such a delay and what options do we have to find what is the next step and related timelines?

[Nightingale]

Hello CocolinaPN,

Sorry to hear you’re having difficulty getting a reply from your Urologist office.  I personally have not heard of this happening too often, but it has happened.  What others have done is contact their family doctor (GP) and have them chase down the Urologist Office.   Do you recall what type of Bladder Cancer your husband has?  For example – was it low grade non-muscle invasive, or was it high grade non-muscle invasive as an example.

Another option you have is to speak with the Head of the Urology department in the hospital and ask for help.  Although this is not common, it is very unsettling and frustrating.

Please let us know if you were successful.  BTW, what hospital was your husband treated in?

Thank you.

[CocolinaPN]

Hi

Thanks for your quick response, much appreciated – we will approach our family doctor and continue to call the urologist office. The urologist said it was superficial and it said it is  an aggressive one, I do not recall whether it is low grade or high-grade. He also stated that it did not penetrate the muscle, and we need the BCG treatment to reduce the chances of recurrence.  Both TURBT procedures were done at the North York hospital.

Thank you

[Tana]

Hi CocolinaPN;

I felt the same – after my 2nd Turbt I thought the sooner the better to get the BCG got me wondering why is it taking so long !
I got the 2nd Turbt in Oct.6 ; 2020 but had a stent in from Kidney to bladder to out – and had to see urologist two weeks after to get that pulled out.
Then silence until just before  Jan. 16 I got a schedule for a cystoscopy and a CT scan. And the BCG schedule for 6 weeks in End of January.
So that was over two months of silence.
That’s my story.
All the best!

[CocolinaPN]

Thank you everyone for your response. Good news – finally we had started the BCG treatments.

[Nightingale]

Hi Cocolina

Thanks for letting us know of your husband’s status.  Glad to hear thinks are moving forward with the BCG treatments.  I am hopeful that all will be fine.

Stay in touch!

 

[marysue]

Hi CocalinaPN:

I’m glad to learn that your hubby will get his BCG treatments real soon.  It is normal to wait for 4-6 weeks post TURBT before starting BCG treatments.  The bladder wall needs time to heal over prior to the start of treatments otherwise he could be at risk for systemic BCG infection which would result in the need for medical treatment.  Not only that but if the bladder wall is not healed the BCG could really inflame the area and cause a lot of irritation and pain.  A small amount of irritation is normal but you don’t want any more of that than necessary.

Like most people, I was concerned that the wait for BCG treatments would affect the outcome, but when I learned of the reason for the delay, it made sense.  I was also reassured that the TURBT surgery at the very least had bought me time and slowed the cancer down if it was not completely gone and I could afford to wait a bit before starting treatments.  I’m over 12 years cancer free after 2 TURBTs and 21 BCG treatments that I had over 3.5 years from 2008 – 2012.

As for the so called “silence” from the urologist’s office – it is maddening and worrisome because it makes you think that they have forgotten about you.  It is usually because they are just so busy but I, like you, would have preferred some sort of regular communication to reassure me that I was being looked after and that my “next steps” were in the cue and I would hear soon.

If you hubby’s cancer is classed as “aggressive” that means it is high grade.  It sounds like his diagnosis was similar to mine which was superficial but aggressive or high grade and that was the reason for the follow up BCG treatments.  Best of luck to him going forward.  (((HUGS)))

 

[CocolinaPN]

Thanks for your note and for the wishes, much appreciated. As many noted on this forum the cancer diagnostic it is really hard on anyone, and your mind involuntary goes in different places and very often dark places. Accepting it and coming to a new normal life while trying your best to cope and go over this hard road is one of the main challenges I found on this journey.

You’re correct – yes indeed his cancer was classed as a high risk one. I did not know this when I wrote first because we never got a copy of his reports. Only after I joined you guys I asked for a copy from our FP.

We are almost done the 6th BCG treatment – this week is the last one. So far he didn’t have any significant side effects. The only side effects were joint pain, but even those ones were not severe. My understanding is that now he needs to wait at least 6 weeks until we will get an appointment with the doctor to have a look and see whether the treatment worked.

Quick question – from your experience are there any cons of planning any vacation trips during this period, or one should avoid any travel?

[Tana]

Hello CocolinaPN;

I have high grade Ta nmbc.

– One of the first questions I asked was ; “are there side effects of BCG”(at the first meeting of the bc diagnosis with my urologist) And:

Can I travel ?

It was the way my urologist frowned to say this is going to be an extensive  full three years to follow.
But he smiles Oh YES he said I can travel! That relieved me, however , Covid shut that idea down pretty quickly.
I have since gone on two skiing week trips and two real camping ( one out in a hike in only ). Within British Columbia. In between treatments.
My bladder buddy told me when it was open she travelled and that she had got a medication prescription from her doctor in case of bladder infection. Said she had no problems.

For your husband to ask his doctor/ urologist if it is ok to travel.

I am glad to hear things are going well with the BCG for your husband! And barely no side effects. That’s a blessing indeed. Am getting mine tomorrow.

I totally understand your comments on going to dark places. A cancer diagnosis – it is such a shock to the mind!

All the best to you and your husband.
Happy Travels!

Cheers- Tana

 

 

[marysue]

Hi CocolinaPN:

Personally, I would not choose to travel while doing BCG as I felt too crappy, but I think that would depend on how one is feeling and if you have your doctor’s okay.  When I was undergoing my second set of 6 in late 2010 and early 2011, I had to push myself to make a trip to Ontario because my father was dying.  I got the call about my father when I had completed 4 out of 6 treatments just before Christmas 2010.  I got the okay to postpone the last two but my brother encouraged me to finish the last two before coming out to see our father.  I finished my last treatment on January 4th and by January 7th I was on the plane.  I was over the worst of the side effects and like Tana’s friend, I got a script for an antibiotic just in case of a bladder infection while travelling. Thankfully it was not needed.

To this day, I don’t know how I did it sitting at my father’s bedside while he was in his last few days and dealing with the fatigue from the treatments.  I would not want to repeat the experience.

As mentioned it would not be my preference to travel while doing treatments but I have heard of people that did travel in between treatment sets especially to someplace nice and warm in the winter months using it as a way of strengthening themselves to soldier on and that makes perfect sense.  All the best and safe travels if you do decide to go somewhere.  (((HUGS)))

[Author]

Posts