New to group

[Ktorg]

I am new to this group. I am a 53 year old male who is also a type 1 diabetic. I was diagnosed with stage 1 bladder cancer at the beginning of June. I was spending some time in Arizona and one day I started urinating quite a lot of blood. I went to Emergency at the Mayo Clinic and had a cystoscopy on May 28th. I had a TURBT on June 2 and they diagnosed me with high-grade papillary urothelial carcinoma invasive into the lamina propria. The urologist wants me to start 6 weeks of BCG therapy 3 weeks from the surgery date and he told me that I should be able to have that treatment back at home in Alberta. Once I got back I got in touch with the urologist here and he told me that he will not start anyone on that treatment sooner than 6 weeks after surgery. Does anyone have any knowledge of whether this 3 week difference will make any difference? I am a little concerned as the doctor at the Mayo Clinic says they have the best success with the BCG treatment starting it 2-3 weeks after surgery. Does anyone have any thoughts on this?

[Jack Moon]

Hi Ktorg
Sorry you have been diagnosed with bladder cancer. In my case I always started BCG treatments 6 weeks after the Turbt. In my case that was 3 different times.
Normally the Urologists like to give the bladder time to heal prior to beginning treatments. Also many of the top bladder cancer specialists recommend a re-turbt after the 1st turbt when patient has T1 High Grade. That is to insure that in fact the tumor had not invaded the muscle of the bladder. See this link to the Canadian Urologist Guidelines regarding T1 Grade 3.
http://www.cua.org/themes/web/assets/files/guidelines/en/canadian_guidelines_for_treatment_of_non-muscle_invasive_bladder_cancer.pdf
There are also several research papers written regarding this subject.
Keep us posted regarding your progress. Many here have been in the same situation as you.
All the best,
Jack

[marysue]

Hi Ktorg!

Welcome to the site that no one wishes they had to belong to. Jack has given you sound advice. Second TURBTS or reTURBs as some call them are becoming the norm especially for T1 as Jack said to make sure that it isn’t T2 which is muscle invasive and potentially could mean having to have your bladder removed. I was high grade but only Ta not T1 and got away with single TURBTS and BCGS. T1 is a bit more serious so I think it would be a good suggestion to have a heart to heart with your uro here in Alberta to see which is the better way to go. As for me like Jack, I was told to wait 6 weeks after surgery prior to starting BCG; same reason; to let the bladder heal before treatment. If the bladder isn’t healed some docs are of the opinion you are at risk for infection/ further inflammation if done too soon after surgery. However your uro is the best judge of your situation. Keep in touch and let us know how it goes and please don’t hesitate to post questions/concerns or share stories/jokes on the Off Topic section.

[Ktorg]

Thanks for the replies. I have an appointment with my Canadian urologist on July 7th. I’m a little frustrated that I couldn’t get in to see him sooner but I guess he’s on holidays until then. I will discuss whether having a second TURBT would be helpful. How did you guys find the BCG therapy?

[Jack Moon]

The BCG treatments, well diagnosed in 2005, I have been cancer free 2007, after 30 BCG treatments. Did have 2 small recurrences during 1st 12 treatments.
BCG can have some side effects, everyone seems to be affected differently. During my 1st 12 treatments, just urgency and burning for about 6 hours, next 18 treatments many side effects with the most troublesome being fatigue for a few days.
Good luck,
Jack

[marysue]

Hi Ktorg!

I had mostly fatigue/ flu like symptoms that would last 24-48 hours after treatments. As I got into my second round of treatments the side effects did increase in intensity and duration lasting more like 3-4 days with the first 1-2 being the worst. I did 21 in total; 6 after my first TURBT in 2008 and 15 after my second TURBT for a reoccurrence in 2010. The 15 were a set of 6 (once a week for 6 weeks followed by sets of 3; once a week for 3 weeks at approximately 3 months, 6 months and 12 months after the first date of the set of 6) 2011 was not a fun year feeling yucky most of the time but today I’m almost 6 years cancer free. My other side effects were headaches, muscle pain, bladder spasms. I did have more than Jack but my body is VERY sensitive to medications so don’t be put off by what I went through. As a female I unfortunately had the effects of treatments coincide with the onset of menopause but I powered through knowing that each treatment would bring me closer to the chance of being cancer free. That is why Jack often says BCG = Bladder Cancer Gone

I just used the yucky days as an excuse for down time to take care of me. I reduced my work hours to allow more time to rest. I was lucky that I had a sympathetic supervisor because she had a sister going through breast cancer treatment and she did her utmost to help accommodate my lesser hours by bringing in other staff to cover for me. Lots of people don’t need to do this though. You won’t know until you get into treatment so my suggestion is; hope for the best (few effects); prepare for the worst( lots of side effects) by being prepared to clear some things off your calendar for a bit and most likely you’ll be somewhere in between and just keep things as flexible as possible knowing that you may just have to bow out once in awhile until treatments are over.

Yeah, I know the wait is frustrating but the tumours are out following your TURBT and the surgery has lessened the risk considerably so now it is just to find out what the game plan is going forward from the 7th. Keep us posted and let us know what the doc says. Take care and all the best. (((((HUGS)))))

[Ktorg]

Thanks so much! It is very encouraging to hear from people that have gone through all this.

[Rick B]

Hi Ktorg,

Sorry to hear you have BC but glad you reached out. I was diagnosed June 2012 and after 2 recurrences have been cancer free since July 2013. I had 20 BCG treatments in total. The 6 week BCG’s were administered usually 5 or 6 weeks after TURBT. The 5 to 6 weeks delay allowed time for the Bladder to heal.

I tolerated BCG Ok. Some burning the first few times voiding and the occasional blood sighting; temp increase and flu like sym during the first 24 hours… You should receive an information pamphlet from your Uro or the hospital staff telling you what to expect.

Wishing the very best for favourable outcome with your BCG treatments and thereafter.

Stay positive…stay in touch.

Rick

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