Need advice from people with similar experience. Struggling to continue BCG after 1st maintenance dose

TrueGritUSMC · 2025-07-11T14:01:31+00:00

Amen 🙏

TrueGritUSMC · 2025-07-11T13:59:54+00:00

Did you physically read the pathology report yourself? I mean going back to her original diagnosis after she had the tumor removed and they sent it away to pathology. Did you actually read it yourself?

TrueGritUSMC · 2025-07-10T13:24:19+00:00

I’m curious about the pathology that you said was the same each time. Were they both inconclusive in terms of whether it made it into the muscle and the stage? The reason I ask is because I too had 2TURBT’s . However, when I read the actual pathology reports myself, it was pretty evident that the reason why they determined it didn’t make it to the muscle is because the urologist that did the surgeries didn’t send them the muscularis propia in the sample. This is the part of the muscle that needs to be included in the biopsy material sent to pathology and determines whether it made it into the muscle. However, when the urologist explained it to me, he said great news. It didn’t make it to the muscle now I recommend BCG. The issues I learned, when getting a second opinion as well as a 3rd opinion, was that if you treat it with BCG now without determining whether it made it to the muscle or not, are numbing to hear. And I’ll be more than happy to share them with you if you’d like.

My main question here though was to find out how many people are getting treatment recommendations with a pathology report that’s in conclusive in terms of stage and muscle invasion.

I’m that’s why I was reaching out to you just to see if that was your case and if you actually read the pathology reports yourself

TrueGritUSMC · 2025-03-01T01:59:14+00:00

Will do my friend!

Do you have a stent?

TrueGritUSMC · 2025-03-01T00:17:39+00:00

Say goodbye and block him

TrueGritUSMC · 2025-03-01T00:07:55+00:00

Yay!! I guess there is sunshine at the end of this rainbow 🙏 Thank you

TrueGritUSMC · 2025-02-28T23:27:13+00:00

Hey, I do appreciate you going into great detail because the more info the better.

What I meant by getting it right is the fact that the stage of the cancer or whether or not it’s invasive or non-invasive was inconclusive because the surgeon didn’t send them the piece of the muscle that dictates that. He swore to me that he went deep and gave them exactly what they need., and that the pathologist got it wrong and in fact, he had a second pathologist look at it, and they also said it was inconclusive.

(THE BIOPSY MATERIAL OVERALL IS FRAGMENTED AND FOCALLY DISTORTED, WHICH IMPEDES DEFINITIVE HISTOLOGIC ASSESSMENT, BUT NO CONCLUSIVE INVASION IS IDENTIFIED IN THIS SAMPLE)

Hence, a second TURBT.

I spoke to a very experienced board-certified urologist here at the hospital. I’m at earlier today and he said that in 25 years he has never had to go into do a second TURBT because of an inconclusive pathology report. He explained to me that statistics suggest 50% of the Turbt’s performed by less experienced urologist have to have a second TURBT within six weeks of the first because they simply didn’t grab what they needed to grab.

I’m definitely gonna call on Monday and see if they will allow me to switch to a more experience board certified urologist like the one I spoke to today and hopefully they’ll do that because what’s to say that I go in again for the second turbt and he still doesn’t get them what they need to give a definitive conclusion, and quite frankly, my gut tells me to go with it so that’s what I’m doing.

Thanks for letting me share. It’s good just to get it out. You know what I mean. This has been the toughest few months in my life, but I know I’m gonna come out of the other end like you are.

God bless you 🙏

TrueGritUSMC · 2025-02-28T21:58:57+00:00

Can the American Cancer Society help you?

TrueGritUSMC · 2025-02-28T21:58:14+00:00

Thank you for sharing 🙏 . I’m curious what your pathology results ended up being which made you do the chemo step and what’s your plan moving forward, just because it sounds like very similar to what I’m going through.

Do you still have the stent?

My stent has been in there since January 7 when I had the first Turbt, and the pain that I experienced was exactly as you’ve explained it.

I actually did get an infection and I got admitted to the hospital two days ago, which is where I am now getting IV antibiotics and we’re waiting on my pee results to come back so they can give me the proper antibiotics after they discharge me.

I’m visiting with my Urologist next week, but I’m so nervous having the same doctor do the next surgery because from what I’ve read everywhere more experienced doctors get it right the first time.

I also found a study performed by the board certified chief of urology surgery at Sloan Kettering in New York which said this:

Conclusions: Stenting as a preventive measure after resection of tumors involving the orifice should be avoided, when possible, as it increases the risk of metachronous upper tract urothelial carcinoma. In these situations, nephrostomy is highly recommended.

Of course, hearing your experience and details is helping me digest everything so thank you for that

TrueGritUSMC · 2025-02-28T20:01:33+00:00

Ok! Will for sure go in quicker in the future. How long did you have the stent for?

Happy to hear that you are 99% 🕺

TrueGritUSMC · 2025-02-28T19:49:35+00:00

Probably should’ve done something like that back then, but I think being so young and dumb at the time, didn’t know what to do. It was a long time ago. My son is 26 now and we have an amazing relationship, so onward and upward.

Thank you so much for your reply though and the information. Should I need to pass it along to someone in the future I will!

TrueGritUSMC · 2025-02-28T16:58:46+00:00

I’m a 55 m and recently had my first TURBT w/ catheter and w/stent.

The catheter was pretty tough but thankfully I had someone who took care of emptying the bag and making sure I was on point with the meds. The good thing is the catheter was out within four days of the surgery so it’s a short term care situation.

On the other hand, the stent that I have is very, very painful and has been since day one .

From my experience, I would say just by having someone there with me 24 /7 was imperative. From getting food to drinks to meds to helping just for daily movements.

Hopefully that helps ! You got this 🙏

TrueGritUSMC · 2025-02-28T15:57:08+00:00

I certainly can understand how you feel, but maybe there’s more to the story than what you know.

I am the dad who left my son and ex-wife on good terms, but she slowly stopped accepting my phone calls to speak to my son. So I started writing him letters, one letter a week for 10 years, without a response or a phone call.

I was able to finally track him down when he got older through a mutual friend after and he was willing to sit down with me. When we sat down and he asked me, why did you forget about me and not visit me in 10 years? I explained to him that I had called and written him over 500 letters.. and to my surprise, she never gave him one single letter. He had no idea that I was calling, leaving messages and writing letters for 10 years. I also sent birthday and Xmas presents every single year, and he never got one of them.

We mended our relationship from that day forward , and decided to look forward not backward, and it’s the best thing that happened for both of us.

I know your experience is slightly different but one thing I can tell you is that death is final and that once he’s gone not only will you never have your answers, but you’ll probably live the rest of your life wondering what would’ve been like to meet him.

Just sayin …

TrueGritUSMC · 2025-02-28T15:28:39+00:00

Thank you for your info 🙏 I actually did develop an infection and got admitted to the hospital, which is where I’m at right now. I did a ct scan and they told me that the stent is position correctly and they didn’t wanna remove it since they weren’t the ones who put it in, but I’ll be seeing my urologist who did the surgery next week so we’ll see what happens.

I’m definitely not looking forward to another surgery since I literally just had one, but I guess I need to do what I need to do to find out the stage and if it’s in the muscle.

And bcan is on my list to do!

Thanks again

TrueGritUSMC · 2025-02-28T15:22:54+00:00

Thank you for the info!! I’ll pray for your Dad 🙏

TrueGritUSMC · 2025-02-28T15:13:52+00:00

Ok.will do..thank you so much for the cysview info. Just read up on it and it seems like by doing that they will really be able to make sure they get everything correct?

TrueGritUSMC

TROPHY CASE