Second opinion on cancer grading?

Posted by vernezze @vernezze, May 11 1:50pm

I have my TURBT next week and I’ve been reading quite a bit. One thing I came across was that there are rather significant discrepancies in the grading of bladder cancers. Should I get a second opinion on the grade of the cancer? Has anyone done this? What were the results? Thanks.

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I had a second opinion on my biopsy slides. My local hospital where I had my first ever TURBT said my biopsy was Adenocarcinoma stage O no invasion into the lamina. I asked Urologist to send my slides to Cleveland Clinic and He did. The results said my biopsy was Urothelial HG
Papillary tumor with few cells invading the Lamina so it was stage 1. I then sent my slides to a near by Cancer Clinic and they agreed with Cleveland Clinic so I switched my Urologists. I think its important to get a second opinion so you get right treatment.

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My second opinion made a huge difference for me. My initial diagnosis at a local New Jersey hospital
was “ aggressive variant, muscle invasive stage two based on TURBT pathology and CT scan with a plan for chemo and surgery because of the tumor size and location in the bladder. I went for a second opinion at Mount Sinai Tisch Cancer Center in New York and switched based on the urologist’s recommendations and options offered there. My cancer was actually locally advanced stage three. I would also encourage you to seek that second opinion at a large academic center in your area if you are able to.
Best wishes!

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Profile picture for ella76 @ella76

I had a second opinion on my biopsy slides. My local hospital where I had my first ever TURBT said my biopsy was Adenocarcinoma stage O no invasion into the lamina. I asked Urologist to send my slides to Cleveland Clinic and He did. The results said my biopsy was Urothelial HG
Papillary tumor with few cells invading the Lamina so it was stage 1. I then sent my slides to a near by Cancer Clinic and they agreed with Cleveland Clinic so I switched my Urologists. I think its important to get a second opinion so you get right treatment.

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@ella76 Thanks. So you got three opinions, correct? Did your insurance cover the second and third?

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No officially only 2. When I sent my slides to clinic near me it went with all my information from my 1st Urologist as I decided I wanted to stay with them. I was not charged for sending them to that Clinic and I think it was because I was a new patient. Insurance paid for original hospital I went to and paid Cleveland Clinic for 2nd opinion. Hope that helps.

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I am having difficulty with biopsies. 1st said markedly atypical crushed cells suggestive of high grade urothelial carcinoma in rt. uterer. Sent to another facility for follow up a biopsy done on rt. kidney pelvis came back as rare atypical cells with crushed artifact deeming biopsy insufficient for diagnosis. My understanding is these biopsies can often get crushed from mishandling, forcepts or even using basket. Bigger question is why doc has not botheted to call or address with me yet leaves stent in which is really creating issues for me. The stent was placed May 8, 2026 and not scheduled tovremove until May 27, 2026. What would the need for stent to remain be. Asked doc and he said makes for easier access. I told him unapologetically What the hell? Is creating a quality of life issue for me. Cannot really go anywhere or tend to daily business needs because in throne room alot for urinary Is this normal to have badly done biopsy and leaving a stent in to make easier for a doc? Further have been trying to address issue of gross hematuria for over a year. First uro oncologist blew off first urologist when she found atypical cells in bladder washing. I do not like waiting this longvtor a definitive diagnosis and any treatment...The ureter went from sm amt to being filled with cells...Going to a supposed top cancer center. Doc said what I have is rare. Any suggestions?

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Profile picture for wire4can @wire4can

I am having difficulty with biopsies. 1st said markedly atypical crushed cells suggestive of high grade urothelial carcinoma in rt. uterer. Sent to another facility for follow up a biopsy done on rt. kidney pelvis came back as rare atypical cells with crushed artifact deeming biopsy insufficient for diagnosis. My understanding is these biopsies can often get crushed from mishandling, forcepts or even using basket. Bigger question is why doc has not botheted to call or address with me yet leaves stent in which is really creating issues for me. The stent was placed May 8, 2026 and not scheduled tovremove until May 27, 2026. What would the need for stent to remain be. Asked doc and he said makes for easier access. I told him unapologetically What the hell? Is creating a quality of life issue for me. Cannot really go anywhere or tend to daily business needs because in throne room alot for urinary Is this normal to have badly done biopsy and leaving a stent in to make easier for a doc? Further have been trying to address issue of gross hematuria for over a year. First uro oncologist blew off first urologist when she found atypical cells in bladder washing. I do not like waiting this longvtor a definitive diagnosis and any treatment...The ureter went from sm amt to being filled with cells...Going to a supposed top cancer center. Doc said what I have is rare. Any suggestions?

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@wire4can from my husband's experience with multiple bladder cancer surgeries that stent is not just a convenience for your doctor, but is also preventing your ureter from scarring and losing diameter. When the doctor does not contact you in a reasonable amount of time with results, then I would be calling daily for information. Perhaps you are destined for yet another "second opinion" to find the best urologist for your medical team. Do you have a large referral or cancer facility within driving distance? We drive 10 hours to continue my and my husband's cancer monitoring at Mayo Clinic in MN. It has proven to be worth all time and travel spent for the high level of medical knowledge.

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Uteter was full of cancer. So scarring prevention is too little too late. Took six months before first biopsy showed what is. By then was full. The stent did not do anything at this point. Regardless of cancer I still need to live my life and stent is really not providing much other than allow tissues to escape into my bladder which can cause seeding, or easier access gor docs as doc had stated. Have already seen tissue in urine. Doc said my type cancer is rare in its location especially since high grade. I am being seen at large cancer center known for this type of cancer but for bladder. Not alot if research about upper uro track per uro-oncologist. I do not like risks with stent infection, incontinence, seeding...I have vascular stents which require blood thinners and had been off two months and went back on this week after doc said to restart them, because that risk is great for event as well. A massive infection can cause vascular stenting to fail. Has been quite the quandry regarding all this. Doc needs to communicate. If continues like this will get clearance to go to Mayo in Az. I cannot wait another 6 months for treatment options. Stent was supposed to be out in days per doc not weeks.

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Profile picture for ella76 @ella76

No officially only 2. When I sent my slides to clinic near me it went with all my information from my 1st Urologist as I decided I wanted to stay with them. I was not charged for sending them to that Clinic and I think it was because I was a new patient. Insurance paid for original hospital I went to and paid Cleveland Clinic for 2nd opinion. Hope that helps.

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@ella76 Would you be so kind to share your urologist’s name at CCF? I am in their system and have not had a good experience to date. Many thanks and continued well being.

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Profile picture for Sue, Volunteer Mentor @sepdvm

@wire4can from my husband's experience with multiple bladder cancer surgeries that stent is not just a convenience for your doctor, but is also preventing your ureter from scarring and losing diameter. When the doctor does not contact you in a reasonable amount of time with results, then I would be calling daily for information. Perhaps you are destined for yet another "second opinion" to find the best urologist for your medical team. Do you have a large referral or cancer facility within driving distance? We drive 10 hours to continue my and my husband's cancer monitoring at Mayo Clinic in MN. It has proven to be worth all time and travel spent for the high level of medical knowledge.

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@sepdvm I could not agree more with your reply. Yes, call everyday, that is what I do and eventually the urologist surgeon caves and calls me back. It’s awful, but that is the way it is sometimes.

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Profile picture for michzn @michzn

@ella76 Would you be so kind to share your urologist’s name at CCF? I am in their system and have not had a good experience to date. Many thanks and continued well being.

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@michzn I do not have a Urologist
at CCF?? Do you mean Cleveland Clinic? I only had my slides sent from my 1st biopsey to Pathology.
Sorry don't know any Drs there.

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