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Diagnosed Today and Looking for Support
Hello All,
I’m really struggling today and could use some support and advice.
Please allow me to introduce myself… I’m a married father of three in my early 50s. I started working out to lose weight and noticed blood in my urine after long workouts. My urologist ordered some tests which confirmed blood in my urine as well as benign urothelial cells that were “negative for high-grade urothelial carcinoma”. The CT scan revealed a tumor in my bladder about an inch around. Based on this, my urologist ordered a TURBT. He successfully removed the tumor last week and gave me an instillation of gamcitabine. At this point, it looked like it would likely be a low grade carcinoma.
Pathology came back today, however, and it was classified as a high-grade noninvasive urothelial carcinoma (stage T1). The high grade is of course very concerning. The prognoses all appear to say that it will almost certainly recur and spread, and it seems 50/50 at best that I will live another 10 years to see my kids grow up. Still digesting the odds.
From a quality of life, all indications point toward my immediate future being filled with frequent TURBT with more chemo or BCG immunotherapy. And I really dislike catheters — removing them is so painful and I’m still burning from my TURBT a week later. I’ve read some things that say it’s simply best with high grade cancer to get a radical cystectomy done rather than risk high grade developing into invasive or metastatic cancer. These quality of life issues have left me drained.
I also live close to Johns Hopkins and their new Greenberg Bladder Cancer Institute… I’m wondering if anybody has any experience with them?
Thanks for any words.
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13 Replies
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I think you have already made up your mind, which I think it is correct decision.
First of all, 1/3 dose was chosen, yes as one of strategies to deal with BCG shortage, but because an European study showed reducing to 1/3 dose did not make difference in terms of the efficacy and side effects compared to the full dose. Furthermore, Dr. Ashish Kamat team validated it by comparing randomly 563 patients who received full dose and reduced dosage between 2000 and 2022 at MD Anderson.
BCG dose reduction vs full dose at MD ANDERSONS
Assuming your NIMBC is classified as high risk (T1HG, CIS) for recurrence & progression, 3 year BCG is likely recommend.
You can estimate additional hours of driving by applying # of expected visit to Hopkins.
6 weekly induction and 3 weekly at 3,6,12,18,24,30, 36 months = 27 treatment
I expect cystoscopy & cytology are done a few weeks after each BCG.
Plus CT scan here and thereAfter the completion of three years BCG, follow up by cystoscopy surveillance first couple years -every 3 months, then every 6 months till year 5, then every year life time. Plus CT scan.
If it is low grade, though there may be recurrence, it will be low grade, there is always exceptions, so local hospital should do fine. If it is high grade, it gets tricky such as managing side effects, and dealing when your tumor does not respond to BCG well. Hopkins should have many tools to deal with such situation.
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I’ve met with both Hopkins and Inova now. Both were positive experiences but also very different.
Hopkins seems to have a greater sense of urgency to get things scheduled and moving. I only got about 30 minutes with the urologist there, but he was compassionate and efficient, and patient with my questions. It feels like they know what they are doing and are highly competent from so much experience. At the same time, it’s got a big city feel that’s less personable overall. It’s also a 90 minute commute through the DC beltway and parts of Baltimore that are a bit rough.
Inova is newer, cleaner, in the burbs, and 1/3 the commute time. However, their urology department is a bit understaffed at the moment, and does not seem as specialized as Hopkins for dealing with bladder cancer. Whereas 2+ weeks has now passed since my initial TURBT at Inova without a follow-up planned, Hopkins wanted to schedule a restaging TURBT during my initial visit… very no-nonsense. Unfortunately the BCG shortage affects both providers equally… they are both doing 1/3 doses.
This is really difficult. I feel like Hopkins just knows what to do but I dislike the commute. But it’s probably a small price to pay. Welcome thoughts and thanks.
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Hopkins remind me of 1) 2nd pathology 2) Someone named Greensburg donated $15M which was used for the nation’s only cancer center for bladder cancer – Johns Hopkins Greensburg Bladder Cancer Institute, 3) Dr. Max Cate who is well known in bladder cancer field. Two short videos below can tell what is him like. I often see him in webinars related bladder cancer.
Dr. Max Cates
Dr. Max Cates 2He is doing right now a clinical trial which compares BCG vs Gemcitabine and Docetaxel sequential intravesical chemotherapy.
Because you are 50s young and I am getting closer to 80. Your priority is different from mine. I listened Dr. Cate talking about bladder cancer and one of audience asked about the timing of cystectomy (podcast 10 years ago). I don’t remember exactly, if it is recurrence, T1 with CIS, he would be discussing early cystectomy. He sounds like he wants to dialogue with his patient. I think it would help you finding out a trigger point to consider early cystectomy though I hope you never need to get there.
He is accepting new patients
Dr. Max Cates profileI was never able to establish a relationship of dialogue with my urologist at local hospital. Like you said, I also live 20 mins from the local hospital where it takes 1 hour to a university hospital. I have noticed that my urologist/ hospital not always follow the guidelines. But he also did surgery for my prostate, and I think he is a skilled surgeon. So, I am staying with him, but if any complicated issue happens, I am thinking of getting a second opinion from the university hospit
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At some point you have to trust whoever you pick. You have chosen wisely in my opinion picking those 2 options. I have had enough major surgeries; I simply trust in their expertise. If I don’t make it, so be it. They are not perfect, nor God. It is one day at a time as that is all you can control. My gut reaction says you will do fine.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
I hope it’s okay to continue using this thread… had a couple more questions, and thank you all for the responses.
A little more about me — I live in the northern Virginia suburbs of Washington DC . When my gross hematuria began, I went to where I was an established patient already: the Inova Health System based in Fairfax VA, about 15 minutes down the road. Their Urology Department ordered the tests which found the mass and scheduled me for a TURBT, which all happened within the span of two weeks. However, following the TURBT, I learned about my cancer diagnosis by reading my pathology report when it popped into my patient portal. I am still waiting to see a doctor there to discuss it (fingers crossed).
There are two other highly regarded health systems in the area for bladder cancer: Johns Hopkins and the associated Greenberg Bladder Cancer Institute, which is about a 1.5 hour drive to Baltimore; and Georgetown University Hospital, which is about a 30 minute ride away in Washington DC. I’ve submitted the paperwork to have my slides sent to Hopkins Pathology already for a second opinion, and have also scheduled initial consultations with both Hopkins and Georgetown to speak with doctors there. It’s not only about second opinions, but finding the best fit and service level for me. I want a collaborative and personal relationship with my doctor, where I can communicate directly if necessary and not constantly have to wrestle with gatekeepers to get through.
On that note, welcome opinions…. I suspect the next steps will be a re-TURBT followed by BCG induction. These are both standard par for the course steps for NMIBC. Notwithstanding the challenges in speaking with a doctor, Inova should in theory be able to handle these kinds of routine things fine, and the convenience factor is in their favor. I’ve also heard that Hopkins and Georgetown tend to tall into the category of large national cancer institutes or university research centers, where one would tend to go if they needed more advanced, unique, and/or personalized care — standard TURBTs and BCG would almost be an overkill to do there. If I can ask, what would you do in my shoes?
Thanks….
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Just my opinion. As BCG works (last I read at 70%+ effectiveness), I’d give it a chance to work. At least the first 6 at which time you will have a cysto to look. I have had somewhere between 15-18 cystos and 12 catheter instillations. Yes, no fun but, doable. You can get through that. No one says you HAVE to complete 27 treatments. Many have started and had to stop and done well. All a lot simpler than regular chemo.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
I’m going to be meeting next week with an oncological urologist to discuss my turbt and future options.
While my thought process continues to evolve, I’m seeing a couple main forks emerging:
– Go with BCG. Pros: may save the bladder for a while (seems about 60/40 chance). Cons: cancer could recur and become invasive. 27 treatments planned over 36 months is a lot to digest… I cringe at the thought o =f catheters being inserted and removed and am still stingy from the turbt.
– Go with early radical cystectomy (eRC) and urinary diversion (e.g., ilial conduit). Pros: avoids the BCG which sounds awful. Greatly reduces risk of recurrence (though by how much I’m not sure). Cons: difficult surgery, long recovery, stoma and bag for remainder of life.
If I get the eRC now, would this be my best odds of survival for longest term?
Thanks.
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Medical records are YOUR property. It might take 24-48 hours to get.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
I’ve started the process with Johns Hopkins to get a second pathological report from their lab on my biopsy specimen.
The trick is getting my initial provider to respond. If they aren’t working the issue, can I just go in-person and ask for a specimen in-person, and mail it or courier it myself to Hopkins?
Thanks for the messages of hope.
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Walkslow welcome,
Sorry this a little slow response. This board for some reason wouldn’t let me post for a few days. As Joea73 said, your URO is taking the right steps. He is a wealth of info for which all are glad for.
Yes, the cystos and caths are no fun. Remind yourself that these are a small price to knock out this disease. They are more “uncomfortable)” than real pain. Maybe 60 seconds as they pass through the prostate and the irritation for a few voids. Get some prescription meds if they are really bad (Pyridium sp?) I reminded myself these are better than systemic chemo.
John Hopkins has a great reputation on bladder cancer plus they can work as a second opinion which usually confirms the first diagnosis. You will get through this and most likely see your 3 kids with grandkids. In 6-12 months, this will be beaten back and merely a bump in life which will make you stronger and more effective.
It is more likely that something else will end our lives being treatable and beatable.Post away as you have any more questions.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Lymphovascular invasion
Pathologist knows that the importance of identifying Lymphovascular invasion in evaluating tissue sample for NMIBC. If there are such invasion, they will say so. Some pathologist may choose not to say about Lymphovascular invasion if the pathologist does not find it. Mine did not say anything about Lymphovascular invasion. So, I do not think there were any Lymphovascular invasion in the tissue sample. You can always clarify with your urologist because the pathology report is a communication tool between the pathologist and the urologist. FYI, there was a study (2008, Japan) to find out number of lymphatic vessels in the lining of the bladder. The lining of the bladder wall consists of Epithelium(Ta), Lamina propria/connective tissue (T1), Muscularis propria/muscle tissue (T2), serosa, peri vesical fat (T3). We can see that the number of lymphatic vessels in Lamina propria (T1) is much less than in Muscle (T2). I think this is why, once the tumor progresses to the muscle layer of bladder, chance of metastasis increases rapidly, so neoadjuvant chemotherapy to kill circulating cancer cells and RC are commonly recommended to MIBC.
Size/ numbersLocation small Medium Large Epithelium (Ta) 0 0 0 Lamina Propria (T1) 6 4 4.5 Muscularis Propria (T2) 23 17.5 18.5 Serosa (T3) 3 3 `1 Perivesical fat (T3) 2 2.5 4 Thanks for sharing the detail pathology report. It is T1HG non-muscle invasive according to the pathology report.
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Hi Joea73 and thank you for your post.
Here is the exact wording of the reports:
MEDICAL CYTOLOGY REPORT
DIAGNOSIS:
URINE, VOIDED
-NEGATIVE FOR HIGH-GRADE UROTHELIAL CARCINOMA (The Paris System TPS category II).
Comment:
The specimen contains rare benign urothelial cells, mild inflammatory cells and red blood cells.SURGICAL PATHOLOGY REPORT
DIAGNOSIS:
Bladder, transurethral resection:
– High-grade urothelial carcinoma with lamina propria invasion
– Muscularis propria present and uninvolvedI do hope I’m cancer free for the moment, but am worried about everything I’ve read regarding lymphatic intrusion, as many reports say this is a key factor in future prognisis. My CT REPORT noted that:
– “There are scattered mildly prominent pelvic lymph nodes.”
– “A few small renal cysts and nonobstructing left nephrolithiasis. No hydronephrosis bilaterally.”How is it possible to diagnosis lymphatic intrusion?
I will try to get the slides from the biopsy and have JH look at them too — this is a wonderful idea, and I appreciate it. the report says they are on “five cassettes” which I presumably need to ask for.
I also appreciate the idea of looking at this gnomically. I suspect I will be faced with a decision on whether to undergo an early cystectomy since I’m relatively young, or treat conservatively with BCG therapy. If there’s any way to predict gnomically how the cancer would react to BCG, it would be a huge help in making this decision.
Thank you again for your excellent information! I’m trying to compile a list of substantive questions that I can use with my provider once they can see me, which is proving somewhat elusive this week, but hoping for the best.
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Hello walkslow,
I am also very surprised to hear that the histology (pathology) report came back high grade when cytology was “negative for high grade urothelial carcinoma because usually cytology follows after cystoscopy sees no tumor. At Yale cancer center, of 2570 cytology cases, 0.8% was diagnosed HG when cytology said Negative.
Do you think you can post exact wording of the pathology report? The reason is that your statement of ” it was classified as a high-grade noninvasive urothelial carcinoma (stage T1)” is a bit contradictive. Once tumor goes beyond epithelial issue (Ta or T0) into lamina propria (connective tissue layer), it is T1 and called invasive tumor, but if the tumor has not invaded into the muscle tissue if it called non muscle invasive. We want to clarify it by reading the exact wording of the pathology report.
I think your urologist has done everything what it is supposed be so far. He went ahead order CT scan. He prescribed single chemotherapy wash after the initial TURBT.
Assuming it was indeed T1HG, at this moment, you are likely cancer free. Let me explain it. CT scan showed a single tumor with the size of one inch (less than 3 cm). It means that your urologist should have been able resect the tumor and surrounding residues completely.
Incidentally, if it is T1HG, your urologist is likely recommend the 2nd TURBT. The second TURBT will resect deeper into muscle tissue to make sure the tumor has not progressed to the muscle tissue and may be wider to remove possible residues remained.The single instillation of Gemcitabine is to kill off fragments from the tumor which could have landed on to other parts in bladder, which would reduce the risk of recurrence.
In terms of grading system, we are now using LG and HG, but it used to be G1 (low grade), G2 (intermediate Grade), G3 (high grade).
In Europe, they continued to use G1,2,3 system in addition to LG and HG. According to the recent international society of pathology and European Association of Urology consensus, they are moving toward LG, G2HG and G3HG three tiers classification. The reason is that they have recognized that all HGs are not the same gnomically and in terms of prognosis, Unfortunately, perhaps for the cost reason, genome analysis is not done routinely, so all HGs are being treated the same today. Incidentally G3HG has higher risk of invading into the muscle tissue but G2HG has less risk.Incidentally, I was listening to the old (10 years old) BCAN webinar and a patient asked a question of early cystectomy. The urologist said if there are recurrences of multiple T1 and with CIS, then may recommend cystectomy. Also, the data which showed early cystectomy gives better survival compared to cystectomy after the intravesical treatment failed are retrospective study and has not really proven the case.
Because Negative for HGUC cytology and HG pathology is less than 1% according to Yale Cancer Center stats, perhaps you may want to discuss with your urologist if your tissue sample be re-evaluated by Johns Hopkins. I am not sure it is covered by insurance, but their website says $400 and the website says once they received the slides with tissue sample, you will get the report 48 hours after.
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