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Bladder tumor
Hi Everyone! My name is David, I am a 66 year old male living in rural Central Texas.
I am retired and walk 5-8 miles a day and have for the last 13 years. I have noticed dark urine several times in the last few years and always thought it was from dehydration, especially during the summer. I would drink a lot of water and it would clear up so never thought that much about it. This July suddenly I noticed blood in my urine – not dark this time but distinctly reddish tint. I drank water but this time it didn’t clear up for several days and then seemed to go away. I ignored it. Then in August it came back and didn’t seem to go away.
I went to my GP and he said that he suspected a kidney stone. I was having some discomfort (not much) under my right rib area. He sent me for a x-ray (KUB) and it showed a 10mm non-obstructing kidney stone in my right kidney and recommended that I see a Urologist. The soonest I could get an appointment was first week of September. The Urologist took another x-ray and confirmed the stone but recommended a CT Scan and Cystoscopy on 9/26. I watched as he did the scope and he pointed out the tumor in my bladder. It confirmed my fears – I had of goggled Hematuria, etc.
I am scheduled for Cystoscopy RPG’s, TURBT on Oct. 13th. The Urologist said he would “scrape” off the tumor and then inject a chemical into my bladder to discourage a re-occurrence.
I am in shock – I did smoke but stopped when I was 45….I guess too late. I’m having a bit of a time coming to grips with my situation.
A few questions –
I assume that I won’t know anything until after the TURBT? What is RPG’s?
I am concerned whether I will be able to maintain my lifestyle in the country. I have cattle and my place requires a bit of maintenance.
I live 1 hr. from Austin, 1.5 hr. from San Antonio, and 3 hr. from Houston. My Urologist is in Austin. Looking at the “Treatment Center Finder” it mentions MD Anderson in Houston and UT Health Science Center in San Antonio. I was wondering if it would be better to maybe go to UT-San Antonio for treatment (it would be a bit longer drive than Austin). Not sure if going to Houston would be possible. But at this late date I will probably have the surgery in Austin on the 13th.
Any thoughts on my situation? Thanks for listening.
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG31 Replies-
I share your frustration and fear. I was diagnosed last year in April at 57 years old with non invasive hi grade bladder cancer by a local uro my wife had been going to for the last 25 years. They took a biopsy to confirm and recommended a follow up surgery. I opted for a 2nd opinion and was lucky enough to get to see a great surgeon (Dr Bernard Bochner) in New York at memorial Sloan Kettering. He did a. 2nd thorough 2nd biopsy in mid April 6 weeks later I did 6 weeks of bag treatments. The effects were not bad the first time around. Next step was a scope very 3 months beginning in September , December (dr noticed small irritated spot) and then back in March. At that last scope he decided for another biopsy which came back positive but very superficial. I continued with regular scopes and discussed and just started 3year bcg maintenance. Once a week for 3 weeks 4 times a year for year one, 3 weeks 4 times year 2, then 3 weeks 2 times year 3. I look at it as a blessing to have options that allow me a normal way of life. The fear is gone but frustration comes and goes. No pity party. To get to a point you made about treatments….. I found as long as you have a local urologist that you’re comfortable with and a short drive do it. I live in Connecticut and go for treatments 5 mins from home. Back and forth to New York would not change the outcome. Following all recommended protocols leaves us in a very fortunate position. As time goes on you will come to terms with it. My family has been a tremendous help. Stay strong and best of luck.
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David,
AS I am not a doctor and everyone’s situation is different, I defer to your gut instinct. Dr. Svatek has a great reputation. I think the key question is the path report and whether there were sufficient “margins” to be sure of what your Austin doc is looking at. IF he is certain his sample and report are correct get that BCG going after that secomd TURB confirming your DX (I see you have that scheduled). While my tumor was small my URO and path didn’t like the “margins” hence the second TURB. Follow your intuition and gut. Your Austin URO sounds like a diligent one. I asked myself similar questions-should I go the MD Anderson-which I didn’t do. Eventually, we all have to put our trust and faith in a caregiver and move on with life.
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.
Alan – I contacted Dr. Svatek’s office and asked about getting a second opinion. They said sure but probably would have to see his associate since Dr. Svatek is very busy doing surgeries but that he supervised all of his associates. I assume this is a non-issue? What do you think? I actually was planning doing this after my next TUR (sched. Dec. 8) and Path report. Before the proposed BCG.
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Thanks so much, Lillian! I will call UHC and see what they say about a second opinion. I was hoping for even better news but I am very thankful that at this point it appears to be superficial.
This whole thing just came from nowhere. I feel so good and have made a concerted effect to stay as healthy as possible. Boom! You never know what’s coming to get ya!
I can’t tell everyone how much I appreciate your feedback. Without this forum and the knowledge that everyone shares (based on personal experience) I would really be mostly in the dark about so much. It allows me to learn, plan, and prepare for my future. Very thankful!
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
David,
I understand your concern about path reports. This is my own take on pathology reports.
If anything in the path report indicates anything other than an absence of cancer, based on sufficient sampling, I want to know how the (uncertain) findings will be addressed.
I am tired of my path reports always containing phrases such as:
“most consistent with”
“Is felt to indicate the possibility”
“does not appear to qualify as”
“is best considered as”
“could support an impression of”I would like straight forward path reports. I do not expect to see them.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Any high grade sample no matter how small should be addressed as all high grade. I had the same question of my URO as a nurse friend with a specialty in bladder oncology told me that the antibiotics given for my first symptoms (hematuria) could cause a tumor that is low grade read as high. My URO responded that he personally read the path report and that it might have been read as grade 2 (I don’t think they use that much anymore) but, ANY part reading above grade 1 is a call for BCG. So, you are getting good and safe advice. BCG is a great alternative to 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.
David, I just took a peek at your pathology report. Basically, it’s states that the tumor was predominantly low-grade, less than 5% of the cells were high-grade, and the sample included muscularis propria so they could verify that it was non-invasive. I would think that this diagnosis would be considered TaG3 (superficial=Ta and G3=high-grade), but I suggest that you call and ask your doctor to confirm that. I also suggest that you ask your doctor to send the blocks and slides from your two TURBTs to Johns Hopkins for a second opinion. The forms are available online. I filled them out myself, then gave them to my doctor when I asked him to send the samples. Most insurances cover the cost (about $250). And even if your insurance doesn’t cover it, I’d suggest you get it done because it’s money well spent for your own peace of mind. Also, getting the correct diagnosis up front is imperative.
The second TURBT will be to take another sample from where they removed the tumor to verify that they got it all; then, the BCG treatments will probably start several weeks later, after you’ve healed from the second TURBT. I’ve had 12 BCG treatments so far. The treatments are not much fun, but they are very doable.
Take care and keep us posted,
LlillianG
5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes – all NED. Now at scope 1x year.
Thanks for the reassuring words. It sounds like you (as well as many others) have been through exactly what I have upcoming . In hindsight, anything I can do to prepare for the BCG treatments?
A couple of items that I would like to better understand are the statements –
“Predominately low grade and focally high grade (less than 5%) Urothelial Cancer – No invasive carcinoma identified”
“Sections show urothelial carcinoma with predominately an inverted pattern of growth. There are some papillary contours. For the most part tumor is low grade. However, there are foci with high grade nuclei. In the high grade foci nuclei are markedly enlarged. The degree of high grade dysplasia is less than 5% of the overall tumor. No invasive cancer is seen. There are items of muscularis propria without infiltrate”
Is the 5% number significant? Using the grading system would this be a T1G2 or T1G3?
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
David,
I wasn’t able to open your document but, not to worry. The words non invasive are the key, meaning it hasn’t hit the muscle. Taking BCG in all probability means it is high grade hence the BCG that many if not most of us have used. Chances are pretty good that it will kill off any bad stuff or prevent it from coming back. It is all doable. Also, you may remember to where I indicated a second TURB is often done on an initial high grade diagnosis. That is pretty standard protocol. Something that I have gone through as well as most of us. Treatment forever? He was probably talking about regular scope exams-usually a couple of years every 3 months, then every 6 months for another 2 then yearly. My URO with my blessing accelerated me to 6 month scopes after another year, then to yearly after another as my tumor was small, cytology showed no problems and the BCG worked so well reasoning that scopes also present some chance of problems-scarring, UTI’s, strictures etc. No fun but, doable. For me I’ll take that for peace of mind. I schedule my annual physical (non BC) separate 6 months apart so we can do the non invasive cytology test as a backup. Hopefully, in a few years you will look back and say hey, this wasn’t too bad. One day at a time. Keep posting, we are here to listen and someday you will be helping someone else get through this.
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.
Path.doc
Well, I got my path report today but it doesn’t seem to use the same nomenclature (TNM) that most people have posted. I am attaching the pathology report (with my personal info cut out) and would appreciate it if I could get some feedback from those of you that are familiar with this type of document.My Doc said that he was scheduling me another TURBT in 6 weeks. After that he said that I would be receiving 6 weeks of BCG treatment and then another round of BCG sometime after that. I asked him about my prognosis. He said the good news is that it is non-invasive and although it will require monitoring and possible treatment forever it in all likelihood would not be fatal. (My words – not his). I was hoping for better news but I guess it could be a lot worse.
Once again I thank you all in advance. After this question is resolved I assume that I will be advancing to the “Non-Invasive” forum threads for additional input/conversation.
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Alan and Sara Anne,
Thanks so much for your feedback. I really appreciate your feedback and knowledge on the topic. No way could this be considered a hijack and I do appreciate y’all taking the time to respond to my questions and concerns. I admittedly feel nervous about today’s consultation (hopefully with my path results) but I am much less apprehensive than I was when I first posted after my diagnosis. I know that others have been through the same thing I am going through and although I certainly didn’t plan on this being in my retirement plans I am determined to do my best to stay positive and make things as good as possible. Thanks again for your efforts on my behalf, I really am thankful.
Peace
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Sara Anne,
You are welcome as the second opinion also had me searching. In my case my URO was so thorough that I rolled with him and in the end we must “trust” someone. And, as you also said there are times a second is almost mandated.
David, hope I haven’t hijacked your thread. Keep us posted as we care about you, and trust we haven’t confused the issue.
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.
Thanks, Alan!!! This is an issue that has been troubling me for some time. There are times when a Second Opinion is critical and we strongly advise patients to get one…(I am sort of saying “hey, something is wrong here and you better check it out!) BUT a Second Opinion is not always a solution for something if there is no problem. Does that make sense?
Any way, thanks for the kind words!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Sara Anne,
You penned so much better what I was trying to communicate! Well done!
Alan
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’ll bet that you are happy to have this one behind you!!
You may have had a wash with mitomycin after the biopsy…or maybe not if there were a lot of “wounds” from the burning off of the other “spots.” A catheter is not necessarily an indication.
Of course, a lot of your questions will depend on the path report. If it is high grade, does he recommend BCG or some other treatment?
As for a second opinion, that is always a good idea IF YOU KNOW WHAT QUESTIONS THE SECOND OPINION IS SUPPOSED TO ANSWER. If after you digest the results of the TURB/pathology, you have some concerns and questions about the treatment that your urologist is recommending, you absolutely want to have a second opinion. If you are very comfortable with his plans (and you have checked out his reputation…which it appears you have) it may not be necessary. A second opinion just to get a second opinion is not necessarily efficient or helpful. As they say, “It Depends.”
For example, I had checked out my urologist’s reputation and training background. He trained with the best. He has been very open to my questions and we have had many discussions. When the 2nd TURB results were back (and the 2nd TURB was also an indicator that he knew what he was doing) and he insisted I cancel a long-planned trip to China to start BCG, I checked out the path report and his recommendations with a friend who is an Army urologist. She confirmed that everything he said and did was “right on.” He also told me that if the time came to recommend a cystectomy he would INSIST that I get a second opinion. So I have not felt the need for going after one.
In another, totally unrelated condition, I had an orthopedic surgeon who I felt was “surgery happy” and was rushing me to surgery. The whole deal just did NOT feel right to me. I pulled out, got a second opinion which recommended trying some more conservative options first. Three years later, problem solved, no surgery.
I guess the reason I am telling you this long story is to say that IF you feel totally comfortable with your doctor and IF his plans conform to what seems to be the standard of practice, you are fine. IF at any time you feel uncomfortable or uneasy or unsure SECOND OPINION TIME!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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