Bladder Cancer: High grade

I was responding to kgordon. PT0A or PT1A papillary is commonly managed through BCG, DOCE/GEM or trials even when high grade. But RC still has the best outcomes in such cases.

Hello , I am new to the group . My husband just diagnosed with aggressive high grade bladder and prostate cancer invading the muscle. We have it first visit at Mayo this Tuesday. Not sure what to expect . Can anyone share kind of how the first visits go ? We are coming from NM. I’m hoping they’ll coordinate care with local oncologist for chemo treatments.

I've been dealing with bladder cancer since last January. Have had various tests, two surgical procedures and six-weeks of immunotherapy. We live in Rochester. I'm an emeritus staff member with 30 years service. Based on my years at Mayo and personal experience, I can assure you your husband will receive world-class care here. Mayo employs all the specialists your husband will need to manage his care with skill, knowledge and compassion. My only advice: Don't hesitate to ask questions. Sometimes the most capable people on the planet need help with communication.

Thank you so much. The doctors here believe he needs both removed but cannot accommodate that big of a surgery. So I’m hoping to get more/better clarification of his case , stage and grade . I’m happy to hear you are a survivor with positive results

Your husband's health status will be carefully evaluated at Mayo. If your local doctor's findings are confirmed, please be assured the surgeon's here are among the best anywhere. (I believe "the" best but I'm based.) Mayo is conservative when it comes to surgery. Our urologists are well versed in the wide variety of non-surgical options increasingly available to bladder cancer patients. I'm confident you will be pleased with your decision to seek help in Rochester and hope your husband's health can be restored. In the meantime, you may find the Mayo health information that's available on the web to be helpful. But to repeat my earlier admonition, when you arrive, don't hesitate to ask questions. There's no such thing as an inappropriate question. (By the way, it's good to hear about surgeons who understand their limitations. That's not universally the case.)

All of the info in the initial visits can be overwhelming. Ask lots of questions. In fact, I would suggest writing down the questions you already have and taking them with you on Tuesday. Bringing pencil and paper will help you jot down notes to remember during your conversation as well. Sometimes I felt like my doctors probably wondered how many questions I could possibly come up with LOL....but both the surgeon and oncologist were more than happy to spend that time with me. That's how I knew I had the right doctors!!! I could tell they were really invested in my care. I hope things go well for you.

It is an extensive surgery: six to twelve hours. They may propose neoadjuvant chemotherapy (and/or immunotherapy through a trial if available). Typically, the first step is a TURBT under anesthesia where they will remove visible disease and take tissue samples to perform pathology analysis. Sometimes neoadjuvant therapy is skipped if a rare variant is found that is typically unresponsive to neoadjuvant therapy. Approximately in 1/3 in patients neoadjuvant therapy does not work and the malignancy could spread during this therapy window. I strongly recommend obtaining signatera and natera reports as part of tissue pathology. In some cases the disease may already be locally advanced in which case surgery for bladder removal and prostate removal can be skipped to EV+pembro systemic treatment right away. Imaging (CT, PET, MRI) can help guide this also. The long removal surgery requires a degree of fitness. Recovery is up to two months. Historically 1% of patients do not survive the surgery. He will have to chose between a neobladder or ileal conduit. Indiana pouches are very rare. Based on post surgery pathology additional adjuvant chemotherapy and/or immunotherapy may be recommended. Many surgery patients experience post surgery complications (akis, sepsis and sometimes additional reconstructive surgery).

My experience with the Mayo in Phoenix AZ is the best, and I live 4 ours away in Hereford AZ.
The urologist surgeon will coordinate with a urological oncologist to recommend if any chemo is needed. I did not, and after surgery, the only requirement was to stay in the area for a week or two, and that while requiring staying somewhere close, it was beneficial as several trips back to the hospital to answer questions and remove stents was needed. My surgeon is Scott Cheney, and he is great, along with his PA, Karen Morgan. The care you will receive is world class.

My experience was back in 2014, Jan 1, to be exact so things may have changed a bit, but the doctors are still there. I was 69 at the time. You are welcome to contact me if there is a way to provide my contact info that is private.

Things have changed dramatically. New immunotherapies (atezo: rarely used, nivo: commonly used in adjuvant setting, pembro: many uses, ave: maintenance after escalation to salvage chemo), new chemo in addition to BCG (DOCE/GEM), targeted treatment (EV). CTDNA (Signatera, Gaurdant, Northstar) and countless trials with even more treatments.