Just diagnosed with low grade non invasive bladder cancer

[Pragmatic]

Hi,  I just had a cystoscopy and on viewing, my surgeon immediately said that it was low grade, non invasive bladder cancer tumour.  I will have surgery in 3 to 4 weeks to remove it, and the results will be sent to pathology and I hope the results will confirm the surgeon.  My question is,  my doctor and resident did not mention any other treatment.  I asked if I would be getting Chemo and they said no.  It seems I will just be getting the surgery only.  What about reaccurences? I thought that BCG was standard treatment, but I forgot to ask my surgeon. On this site it says that you get it if you have an aggressive tumour.  I also read that there is a shortage of BCG and some cases of rationing.  Would BCG be normally given to me if it was available, if there wasn’t a shortage?  Is it only given to aggressive tumours?  Is this shortage still going on? Hopefully there is an answer.  Otherwise I have to wait for 3 or 4 weeks when I see the surgeon again.  Thanks for this site!

[melusine]

Hello,

I knew that I have High grade non-invasive bladder cancer on December 2019. I don t know if it’s  because it’s High grade that I have treatments, but it can be.

Maybe you don’ t have treatments because it’s  low grade, but I m mot sure, I m mot à doctor. Ask your urologist.

melusine

[Jack Moon]

Hi Pragmatic

Sorry you have been diagnosed with bladder cancer. Your Urologist will need to confirm your stage and grade from the lab before any decisions are made regarding going forward. If indeed your diagnosis is non-muscle invasion low grade your doctor may wait and see what happens during the next 3 months.

It is quite common to use this approach when 1st diagnosed with low grade bladder cancer.

At this point I would not concern yourself regarding BCG treatments or the current shortage. BCG is normally given to patients diagnosed with non-muscle invasive high grade bladder cancer or CIS although some are given BCG with low grade when there are multiple tumors and at least 1 large tumor but not that common of a practice.

I suggest you stay positive, if you smoke it is recommended you quit. We all understand the difficulty in waiting for results we have all been there.

Keep us posted,

All the best,

Jack

[Pragmatic]

Thank you for the information.  I feel much better.  Just have to wait for my surgery date.  I will keep everyone posted.

 

 

[Rick B]

Hi Pragmatic,

Glad you reached out to BCC and best wishes on the outcome.

Great advice from Jack on the process and particularly about concerning yourself about the BCG treatments. If you’re like most of us, waiting for the TURBT and then the pathology results is trying and at times a bit anxious. You should expect to wait 10 days or so before hearing back on the results which would be normal. Mine was non-invasive low grade and CIS so because of the CIS, I did have BCG treatments. I experienced 2 recurrences of low grade without CIS but because of the prior CIS my URO continued with BCG after each recurrence. I have been cancer free 7 years now with annual cysto follow-ups.

Stay positive…stay strong…stay safe!

Rick

[Pragmatic]

Thanks Rick, for the info… great !!! Yes I will try to say strong, been out walking and biking and staying away from the computer ( surfing cancer etc..) so all is pretty good. Hopefully find out my surgery date soon !

[Nightingale]

Hi Pragmatic,

I am an 11 year survivor of BC.  I hope that your results come back similar to mine which is low-grade and on the lining.  My cancer came back 3 times and the last procedure I had was a laser ‘zapp’ while my Urologist was inside my bladder with his scope.  I went back for check-ups every quarter for the first 3 years, then moved to every 6 months and then once a year.  In the spring of 2016 (if I recall correctly) I had my last check-up, and so far so good.

I did not receive any BCG treatment, just the scraping and laser treatment.

Good luck and let us know how it goes.

My Best.

[Pragmatic]

Thanks for the good thoughts NIghtingale !!! Great to hear your story. I hope I go the same way !

[marysue]

Hi Pragmatic:

I concur with everything that has been said.  I was diagnosed in 2008 and 2010 with non-muscle invasive high grade bladder cancer and did have BCG treatments.  I have a friend who is another survivor who was diagnosed with non-muscle invasive low grade and didn’t have BCG treatments.  She only had bladder cancer once and was just going for cysto checks.  Despite no BCG it has not recurred.  I had 21 BCG treatments over 3.5 years.  Not fun.  Both my friend and I are coming up 10 years cancer free. Outside of having no cancer, the best “diagnosis” that a bladder cancer patient can get is “non-muscle invasive low grade” bladder cancer which I think you may already know means early stage and slow growing. Best wishes going forward.  (((HUGS))))

[Author]

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