T1 mixed low and high grade

[Jtarnow]

I have recently(March2014) been diagnosed. Have been through a TURBT March 31. Pathology came back mixed low and high with a T1. Urologist has booked second TURBT June 5. I am only 44 and am now scared shitless. Excuse my language. The second surgery is to make a final decision as to low or high I guess. First surgery did not go well at all! Catheter in for 8 days post surgery with multiple visits to ER for extreme pain. All they would do is flush me out then send me home. Still having issues as far as no control and am wondering how long this might last? This has all been happening so fast that I haven’t had time to fully process everything. Any tips or insight would be greatly appreciated! Thanks for taking the time to read and offer any suggestions.

[Rick B]

Hi,

I’m Rick and I too was diagnosed with BC approx 2 yrs ago. I have a few my years than you but BC is not particular who it picks a fight with.

You’ve taken the right first step…reaching out to others who are experiencing the same and you will no doubt hear from many who are on the same journey. You’re probably reading a lot on the internet and elsewhere which is good but unless you have the background be a aware that a lot of the stuff may not apply to you. I see you live in a large centre (Edmonton) so you’ve probably got access to larger Cancer Centres / Hospitals which is a good thing as it should mean that there are top Urologists there too.

You may have received your Pathology Report already but if not you should ask for it. I didn’t at first and so I was sort of in the dark a bit knowing only that I had a low to high grade tumor and CIS. What the heck is CIS, etc? I got my report and a fellow BCC member (Jack Moon) helped me a lot to understand it.

I did not experience the catheter, as you did, after my first TURBT but my first follow-up (like you) was in 3 months and that was a regular cystoscopy to have a look see. However, I did receive 6 weekly treatments of BCG after the TURBT and before my follow-up cystoscopy. Could it be that your June follow-up will be a cysto…or the start of BCG? BCG stands for Bacillus Calmetter-Guerin which is a vaccine used to stimulate immune responses to destroy cancer cells in the Bladder. In my case, it was needed to treat CIS (carcinoma in situ). I’ve had 2 recurrences (yep!…2 more TURBT’s) followed by (2 x 6 weekly) BCG treatments. My last was nearly 12 months ago and I’m now on survellience every 3 months for the next year or two.

Again, good you to connect…please keep in touch and let us know about your follow-up in June.

Stay positive and strong.

Rick

[Jack Moon]

A 2nd turbt following cancer pathology results of T1 is normal usually 6-8 weeks following the 1st turbt. T1 means the tumor(s) have gone into the wall and the lining of the bladder. The 2nd turbt is to confirm the results of T1 and insure the tumor did not reach the muscle of the bladder. Once this is confirmed the normal treatment for T1 high grade bladder cancer is BCG. The urgency you are having following the first turbt is normal and hopefully will clear up very soon.
Being scared shitless, is what we all were when diagnosed with bladder cancer. As Rick says you live in a city that has many bladder cancer specialist and a great hospital. Keep us posted and do not hold back on your questions.
All the best,
Jack

[stumblegirl14]

I don’t have anything really to add as both Rick and Jack have given you excellent advice. These first months of bladder cancer diagnosis can seem very overwhelming & luckily it seems you have a doc that is moving quickly to get you the best results. Don’t be shy about asking for a copy of your pathology report as it’s important info for you to have and start a little book with your questions written down and dates of your procedures. We are all glad you found us on this site and certainly wish you all the best going forward. Remember there are no stupid questions and others will be happy to answer what they can. Along the way you may find a little humor to lighten your mood. Keep us posted on how you’re doing.
Flo

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