First scope since the initial 6 BCG treatments.

[lefmike]

After a day and night of high anxiety and lack of sleep, I had my fist scheduled cystoscopy one month after my last of 6 initial BCG treatments.  The news was not good,  it wasn’t horrible either  but not the ” You’re all clear” .   The doctor found a flap of something hanging on where the initial tumor was removed. He thinks it’s benign but to be on the safe side, he wants it out ASAP.   So TURBT number 3 on the agenda for this puppy.   Also he found a spot that looked inflamed  but also said that it’s caused by a reaction to the BCG and that it’s working.   So now I wait for the TURBT  and hope and pray its s minor as he thinks it might be.   I’m gathering I have to wait for the results of the biopsy of this flap before they book me for round one of the BCG maintenance.

Not pleased  but not devastated either.

 

Mike.

 

 

[marysue]

Hi lefmike:

Sorry to learn that the news was not the “all clear” that you hoped for but as you said it could have been much worse.  We will keep positive thoughts and prayers coming your way that the “flap” turns out to be just that a flap and nothing more.

If it does turn out to be something, I think the positive side to it is that it will have been caught very early and should be reasonably easy to deal with.  The TURBT will remove it and most likely some follow up BCG will end it – which is what we will all hope and pray for.

As for the bladder being inflamed by the BCG – when I had my first cysto post first 6 week round of BCG I too, had a dark pink patch on the back wall of my bladder which my uro told me was remaining inflammation from the BCG.  He told me that it would most likely be gone at my next cysto.  When I went back 3 months later, it was gone.

Hang in there.  ((((HUGS))))

[Jack Moon]

Hi Lefmike

Sorry not exactly what you were hoping for. Hoping just a benign growth, I had 2 during a 3 year period.

Good luck with the BCG maintenance treatments.

All the best,

Jack

[lefmike]

Thanks guy’s,  As I mentioned it didn’t look anything like that hideous thing that was there previously, it looked more like a flap of tissue attached to the wall.  What I’m finding with this story, is just how BC takes over our lives.  We had plans for November and part of December and those are now on hold until the TURBT,  meaning reservations put on hold.

I read here once from someone, not sure whom but she/he said to not let BC take over your life, plan treatments around your own plans…  How can someone do that?   We’re at the mercy of the health care system to a point…  Do not get me wrong, I’m not complaining, just a little frustrated at having to cancel plans.   I do have another question if I may,  I live in SW Ontario in the Windsor region,  is there a support/discussion group formed here like in other cities?

 

Thanks all, have a wonderful weekend.

 

[Jack Moon]

Hi Lefmike

BCC does not at this time have an in person support in your area. If you would like to speak to a survivor just call BCC at 1-866-674-8889 and leave a message. We have over 40 peer support volunteers. Several like myself have undergone BCG treatments. I agree it is sometimes very difficult to make plans when one has cancer. May be easy to schedule around some appointments, but not easy to schedule around surgeries and treatments.

Keep us posted on your progress.

All the best,

Jack

[Rick B]

Hi Mike,

Thank you for keeping in touch. Like what’s been said, we’re hoping the residual is benign and that you’ll be hearing “all clear” soon.

As to plans, etc. while this is going on, I hear you loud and clear. I had 2 recurrences (each low grade) and during that time I tried to get away a bit. Mostly to help keep occupied with other stuff and to support my number one supporter/caregiver, my wife. The stress on both of us was enormous at times so a get away even for a few days was helpful. And, I always tried to think about what I’ll be doing once this issue is under control even thought the first couple of months dealing with it was tough.

Wishing you the very best, stay positive, stay strong! God Bless.

Rick

[Nightingale]

Hello lefmike,

I wanted to let you know that I am the Facilitator for the Support Group in Hamilton.  Should you be interested, let me know and I will provide you more details like location etc.  Our last Support Group for 2019 is Tuesday Nov 26th.  We break for Christmas and then resume in January.  We have a great group of survivors who are great to talk with.  In our Session in September, we spend the entire time supporting a new Patient who was trying to make a decision on the type of external pouch to use.  I can tell you he was very glad he attended.  The session was very uplifting.

Let me know…and all the best for your next procedure!

My best!

[marysue]

Hi lefmike:

I too, experienced a lot of frustration while going through surgeries, treatments and check ups every 3 months.

I found the best way to get through it was to take one thing at a time and do baby steps.  Okay, I couldn’t go on a cruise because of the weeks of treatments but I could plan a short get away.  While waiting for my first TURBT, my hubby took a few days off work and we went to the Okanogan.  We swam in the lake, picked cherries and took in the sites.  It was a really short trip but did wonders for my mental state, lessening the feeling of how cancer was now controlling my life.  When doing active treatments we did short overnighters to various places.  It still felt like travel and that there was some normalcy in our life.  The trips took cancer off my mind for a while.

When I finally finished treatments in 2012 we celebrated by going to Vancouver for 1 week, visiting our two middle sons who lived there and took in the sites. So I think what I’m trying to say is plan shorter easier stuff and save the longer travel plans to use as a celebration when you have recovered from surgery/treatments etc.  Best of luck and let us know how it goes.  (((HUGS))))

[lefmike]

Hello all,  Thanks so much for the encouragement.  My wife and I are fortunate in that we have a 2nd home in FL.  So instead of planning long Winter stays there as usual, for the time being, we’re going when we can.

I found out a week or so ago that my 3rd TURBT was not being scheduled until November 25th and that I have to do a pre-surgery physical on the 22nd we decided to drive South this past weekend and will stay here until the 20th and fly home the 21st.  I HAVE NOTHING TO COMPLAIN ABOUT ! ! ! ..   What we do later will be decided at that time,  life has handed me a little roadblock so I just use a different path that’s all ….

To Nightingale:  Thank you so much for that information,  I will love to attend a session as soon as I can. The Tuesday Nov 26th is out as I have that TURBT the Monday in Windsor  but I will keep in touch with you if I may  and you can let me know about other sessions.  Just speaking to someone who has gone through what I presently am I’m sure will be a great stress reliever …

I will let you all know the news from my next TURBT as soon as I hear…   I’m looking forward to good news and begin my maintenance BCG late December.

All the best to everyone

Mike.

 

 

[Nightingale]

Hi Lefmike,

I am very glad to hear your more upbeat and positive tone!  It goes a long way to determining how you feel both mentally and physically.  Let’s stay in touch and if you decide you want to make a trip to Hamilton to visit with us, email me at alexh@bladdercancercanada.org

My best,

[lefmike]

Update….

TURBT number 3 performed Monday the 25th.   The doc took out the flap I mentioned previously  and said he also scraped out 2 “tiny spots”.  As expected I must wait until the biopsy report comes in.  WOW  Those two spots were not noticed during my scope in October,  but he also said that the BCG is working so I guess he’s not too concerned about them.  He did say   we have to wait for the results to determine if I go for my originally planned 3 maintenance BCG’s or start over again with 6.  Again, not the outcome I was hoping for but  I will deal with what is dealt.   I read previous posts on getting another round of 6, and it doesn’t sound pleasant.  Still holding out hope that these are just bumps and are not malignant.

Good luck to all facing this illness it’s not fun.

Thanks to BCC for being here also..

Mike

 

[Rick B]

Hi Mike,

Hoping the results are favorable.

I had  3 TURBTs too and 6 treatments of BCG after each. I tolerated the BCG well and received all clear just over 6 years ago. My URO said it sometimes takes 2 or 3 rounds of treatments. My initial diagnosis  showed low grade plus cis. The cis did not recur but one or two very small spots showed up.

Wishing you the very best, stay strong, stay positive…

Rick

[lefmike]

Thanks for the reply Rick B,  this is what this site is so beneficial for, others having already faced what other are presently going through.  I was concerned because of possibly having to have another full round of 6 BCG treatments.  I was totally geared to having the round of 3  not 6  but after reading your reply you have given me further hope in that this is a proper course of treatment.   I will keep you up on the results of the biopsy and treatment plan when I find out on the 17th. regards to all.

 

Mike L.

 

[Jack Moon]

Hi Mike

I had 2 recurrences after my initial diagnosis. Against my Uro’s recommendations I had a 3rd round of BCG treatments after my 2nd recurrence. Got the all clear and then 12 maintenance treatments. Been all clear now 12 years. Do not give up hope.

Best of luck,

Jack

[Miki]

Hello, y’all,

I do not pretend to know how it feels as I just finished my sixth BCG treatment last Friday and … the patient seems to tolerate the treatment well … now I wait until January 20th, 2020 for my first cystoscopy after the BCG and decided that no matter what happens then, I will be fine.

The staff at PMH and TGH were fabulous, unbelievably skilled and supportive (I was diagnosed in early May 2019, had one TURBT in June and another corrective one in August), went to my BCC Support group meetings every month, volunteer for BCC and kept my spirits up. Everybody works so hard that I, who they actually work for,  the least I can do is to be optimistic and trust in success.

In my BCC support group we have a broad selection of cases: people with neobladder, no bladder, diagnosed 12 years ago and diagnosed 2 weeks ago … we cover the spectrum: youngest is 38, oldest is 75 among us we have countless TURBTs and even more BCG sessions bad scope sessions, good scop sessions, inconclusive scope sessions,  we have them all … and we share our experiences and advice … The best decision I made was to join this group.

I do research on all English speaking bladder cancer associations (US, GB, Australia, and Canada) and am on numerous forums. The more I know, the better equipped I am to help my “health team” (sorry this is the preferred term instead of “my doctors“) to cure me.

Keep your spirits up and update us on progress … reach out to anybody useful for assistance,

Best,

M. U.

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