BCG failed

[MickT]

Diagnosed in Sept. 2018 with HGT1.  Second TURBT done at end of Oct. 2018 to confirm diagnosis.  Started BCG treatments Dec. 2018.  Halfway through the treatments I had a follow up CT can which showed a 6mm something…they were not sure.  My doctor really thought it was inflammation from last surgery.  Was advised to finish the last 2 BCG treatments of 6 and then get scoped 10 days after last BCG.  This morning I had the scope which showed multiple tumours…..:(   They are going to do a third TURBT.  Once those pathology results are in some decisions will have to be made.  I gather if the tumours are LG they may try BCG again?  or if HG, I am looking at bladder removal?    A disappointing day……I couldn’t believe what I saw on the screen……..

[Jack Moon]

Hi MickT

Sorry about the recurrence. You are correct, it will depend on the pathology report results before the next step can be recommended by your doctor.

Keep us posted and try to stay positive.

Jack

[joey]

Hi MickT,

I am sorry the recurrence had happened.   I am in surveillance but every time I have a cystoscopy I get so anxious. So  though it has not happened to me yet, I do understand how you are feeling now.    Having said that I know a friend of mine, who had T1Hg and he had recurrence with multiple tumors.  His doctor then put him on BCG + Interferon and there has not been recurrence for long time.  So, I suggest that once you get the result of pathology of the recent TURBT, make sure to get the copy of the pathology and consider a second opinion from a major hospital with cancer centre preferably where a doctor from BCC medical advisory board works.  Those hospitals can accommodate more options for bladder preservation than straight to bladder removal.   Jack should be able to  assist you this matter.

Best luck

 

[MickT]

Hi,

Just an update.  To begin I want to thank everyone for their concern and helpful advice.  Joey:  At the time I wrote the last post I was sent by my previous Urologist to see Dr. Kassouf who works out of the Cedars Cancer Centre in Montreal.  I couldn’t be in better hands.  I had my 3rd TURBT done 3 weeks ago and I met with him today.  The pathology came back with T0 low grade this time.  He removed 4 tiny tumours.  He feels at this point that the BCG is working since my initial pathology was T1HG back in September.  I didn’t realize the grade of the tumours could change.  I will resume the BCG treatments of 3, I do not have to repeat the initial 6.  After this I will have another scope to see if the BCG keeps working.  So fingers crossed.  Happy St. Paddy’s Day!  Many thanks for this forum.

 

[Nightingale]

Hello MickT,

A very Happy St Paddy’s Day to you!  Very glad to hear of your improved situation.  Sending positive thoughts your way and have my toes crossed as well.  Keep us updated if you would please.

My best,

 

[marysue]

Hi MickT

I have heard that with some people BCG takes a longer time to take effect.  I consider myself a little bit in that category.  When I had my first TURBT in 2008 it was followed by 6 weeks of BCG.  That was it except for cysto checks every 3 months.  I had a small recurrence of one tumour in 2010 and had a second TURBT followed by a second 6 week set of BCG and 3 sets of follow up BCG.  I’ve been cancer free since.  I have often wondered if I had had 3 sets of 3 following my first set of 6 if I would have avoided the recurrence.  I obviously will never know but I think of things this way; what the first set of treatments didn’t get, the second did so hopefully it will be the same for you.  Bests wishes going forward. ((((HUGS))))

[Bladderboy]

Hi MickT, Happy for you that it was caught. Hopefully the 3rd TURBT will be it. I’ve had 2 in the past several months and I’ve just had my 3/6 BCG. Thanks for the useful information. All the best and keeping drinking that water.

[Roots45]

Hi MickT;

I had a very large tumor removed with two TURBT surgeries in January and February, 2018.  It was HGT1.  This was followed by 6 BCG induction treatments.  A small tumor was found and again was HGT1.  Bladder removal was the protocol, but my Urologist and I continued on a path of 1/3 BCG + Intereron for a 6 week period.  Scope showed bladder clear.  We then continued for a Maintenance protocol with the 1/3 BCG + Interferon every three months.  Three more scopes and I have been clear.  Just starting another session yesterday of 3 weeks.  I am more than pleased with my decision to continue with this treatment.  I have side effects of chills for about an hour and then fevers which are controllable with Tylenol and cold packs on my neck over a few hours.  I sleep a lot for the next day, but after that I am good to go.  I just make sure I take it easy while on the treatments.  I’ll take the side effects any day over the possibility of losing my bladder.  Consider all possibilities.  Protocols are there to guide you and your Urologist.  You make the final decisions on what’s best for you.  Good Luck.

[marysue]

Hi Roots45:

Stage 1 is a tricky area when it comes to bladder cancer treatment.  Many uros vary on their protocol for treatment.  Some recommend an RC especially if there has been a recurrence of the same stage.  Others like yours will sometimes consider subsequent rounds of BCG or another agent.

I know of people with Stage 1 that went straight to an RC after several recurrences and didn’t want the risk of it becoming Stage 2 Muscle Invasive.  Others like you chose to keep fighting on with BCG or some other form of bladder therapy.  In addition to the physical risks with this disease there are the mental as well.  We are all different in how we tolerate our “battles” with illness.  With those that went the RC route in their minds it was a case of taking the step to get rid of it once and for all, whereas others fight to keep their bladders because they have a different view about an RC.

As you mentioned, a person’s urologist and other members of the medical team are the best people to help each person weigh the pros and cons of what the risks are with each choice.  An RC as we know, is a really big surgery so the decision can’t be made lightly.

I was Stage 0 so an RC was not on the table for discussion but my uro recommended the BCG because it was a high grade cancer and told me that I was at considerable risk for progression if I didn’t undergo the treatments.  Like you I had to take it easy after treatments.  I felt like I had a whomping dose of the flu each time but as time went on, I realized that I stood a real chance of beating this thing.  Today I’m nearly 10 years cancer free and am glad that I put on my big girl pants and got the job done.  I wish you well.  ((((HUGS))))

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