Low grade ureter and renal pelvis kidney cancer diagnosis.

I had the laser ablation of my UTUC tumor on Tuesday, 10-25. It went well and my doctor said he was able to get all of the visible tumor using a basket (the instrument used to remove kidney stones) before using the laser on the last bit. He inserted a stent and sent me home. I had some discomfort (not really what I consider pain) for a few days. I didn't even have to take pain meds. I did take Tamulosin (Flowmax) to keep my ureter relaxed and also Pyridium (prescription AZO) for any burning during urination. I never really had any burning so i stopped it after 2 days. I went back for my follow up appointment yesterday. He removed my stent and then we talked. He said that he is confident that he removed the entire tumor BUT (there's always a BUT) he wants to do another uroscopy in 3 months just to be sure. If any tumor has grown back, he will laser it on the spot. One important note- my doctor told me I am NOT a good candidate for the Jelmyto treatment due to where my tumor had been growing, and the physical pathology of the tumor. I trust his opinion, but I plan on discussing this further with him at our next appointment. I am relieved, but cautious to consider myself "cured". I can't help it. If you are reading this, you know that once you hear the word "cancer" your life is altered---forever. All I can do is trust my medical team and pray. I will continue to keep up with this website, in case there is anything I can do to help others dealing with UTUC.

Such great news, Sally. Having confidence in your care is important.

I had my appointment with a Nephrologist yesterday. I was referred to him by my PCP months ago before my UTUC diagnosis for a blood pressure problem. The blood pressure problem eased up over time but I decided to keep this appointment to get a THIRD opinion on my UTUC treatment by my SECOND opinion urologist. First, he looked at my records concerning my blood pressure and assured me that my numbers weren’t bad after all which put me at ease. Then we discussed my upcoming laser treatment for my UTUC. He agrees completely with that course of treatment and commended me for getting the second opinion. He was shocked that my first urologist only gave me 2 choices for my low grade non invasive UTUC (Jelmyto or a radical nephrectomy). (Although he DID say a radical nephrectomy IS the appropriate treatment for high grade invasive UTUC. ). He said my both of my kidneys appear to be healthy (just a small drop in function-probably due to the tumor blocking part of my left ureter) and a healthy kidney should not even be considered for removal, even with the low grade UTUC. He stated that everything should be done to eliminate the UTUC before even considering a nephrectomy and the laser ablation was an excellent start. This consultation was such a relief and confirms my decision to go ahead with the laser surgery. Please….if you have any doubts at all about a diagnosis or a treatment plan—get second and even third opinions. I felt almost happy when I left the Nephrologist’s office. He took his time explaining everything to me and put me at ease about my upcoming UTUC laser surgery. He is optimistic for my prognosis and that means a lot to me. I feel like I can relax a bit knowing I’ve made the right decision for my health. 🙂

Sally...I will for sure continue to post anything I learn that may be of help to you and all that follow our conversations. Like you, this diagnosis and the worr/fear never really disappears from our thoughts. I wish you success in the lazer fulgration proceedure, and possibly your doctor's may recommend the JELMYTO proceedure as an extra insurance proceedure followup. And, I did learn from UROGEN that Jelmyto process can be done more than just once if doctors believe it is necessary. Wish others with our UTUC would participate in this Mayo discussion forum. After I talk to other patients refered to me by UroJen...I will share their results with the treatments.

This information is so appreciated. I’m glad that UroGen was responsive to your inquiry. They have to know that patients are anxious for information about their product (Jelmyto). That someone actually called you back and is facilitating yet another contact is wonderful. Perhaps you can keep us posted via this forum, so others can benefit from the knowledge you are obtaining. Sharing what you find out will truly be a blessing to those of us frustrated by the lack of information about Jelmyto on the internet. I will definitely be checking here for updates. I’m trying to “take it easy” and relax about my situation for the coming weeks leading to my laser treatment. As everybody who has been diagnosed with cancer knows, it takes over your life. I’m trying to take “days off” from thinking about it, but it’s not easy to do as my brain won’t cooperate! But, I will check in here at least daily because it helps me tremendously to have the support and fellowship from others on this journey. Thank you for your efforts to get us info on Jelmyto and I look forward to your posts. 😊

Sally...as I told you earlier, I proactivly reached out to UROGEN the manufacturer of Jelmyto to see if I could get any more up to date data on the product, the success rates of cure, the side effects, and any improved 'best practices' for the proceedure. A very informed lady did reply and called me yesterday. She said they now have a total of 100's of patients that have or are on the drug. She admits that the patient/doctor feedback is difficult to gather (although problems and side effects are to be reported to them and FDA), doctors often do not follow through. She said the alternative direct tube into the kidney has reduced the number of ureter strictures issues, and she sent to a linked report that I could read that study. She also had that a different UROGEN, patient advocate person contact me...and they are going to set up a way for me to talk direct with others who have used the JELMYTO process. I will let you know more after this direct patient research process. If you would like my direct phone number to chat further I am open to sharing and easier discussion. Texting on my cell phone is to slow. God Bless.

Hi all! My laser surgery to ablate my UTUC tumor has been set up for October 25th. I’m very glad this treatment option was offered by a urologist who wants to save my kidney as much as I do! Also, to anyone reading this who is hesitant to get a second or even third opinion because they are worried about offending their current doctor…please let that feeling go. As a matter of fact, your current doctor should be ENCOURAGING you to get a second opinion. Just make the call and follow through. It’s your health and your right to manage it. I have an appointment next week with a nephrologist for a THIRD opinion, and to establish a relationship just in case my kidney does eventually have to come out. I’m trying to be proactive, even though I’m still in shock somewhat from hearing my diagnosis. It’s definitely life changing and it shifts priorities for sure. Also, thank you to Mayo Clinic Connect for providing this forum for us. It has been a tremendous help to me to be able to vent and discuss my diagnosis with other cancer patients. 😊

Puppealuv...yes . Keep doing research. Get a pathology report and see if you can learn the 'type' and the grade, invasive or non-invasive of any cancer if it is present. A cytology test and more sensitive cytogenetics test might provide the answer to if you have alternative options. The weight of this concern is so difficult to bear...I wish you the best. But, you need to keep digging and reconfirming the data. Remember, being a doctor is just a JOB to many in medicine. They go home at 5pm but you carry the worry and concern personally 24 hours a day. Be sure before you take your next step. Keep us informed.

My upper tract urothelial cancer was noticed on a CT scan that my primary care (not a urologist) ordered as I was having occasional pain in my left side. The radiologist said it was “a neoplasm” at the very top of my left ureter near my kidney. So, I was referred to a Urologist who looked at my CT scan and said the ONLY WAY TO DIAGNOSE THE NEOPLSM DEFINITIVELY was with a biopsy. So, he did a biopsy which entailed an outpatient procedure where I was put under general anesthesia and he inserted instruments through my urethra , through my bladder, and up into my ureter until he got to the tumor. He then took an instrument called a “pirhana” and took pieces of the tumor out. The samples were sent to a pathologist who diagnosed my cancer. My first urologist gave me 2 options…Try Jelmyto or take out my kidney. I wanted to try the Jelmyto and I was referred to another urologist to discuss the JELMYTO treatment. THIS urologist suggested we try lasering the tumor out and I’m going to try that first. If I were you, I’d make an appointment with a NEW urologist and take a list of questions to your first appointment, which would include asking how your former urologist came to the cancer diagnosis without a biopsy, and what tests the NEW urologist is going to perform to get a definitive diagnosis. (Be sure to call your old urologist and have them send your records to the new urologist). ALWAYS get another opinion if you are uncomfortable with what you are being told. It’s your health, and your kidney you want to protect. I hope this helped.

I was diagnosed with ureter cancer in July. The hospital said they think I have cancer. I went to a urologist in NJ. He did a cystocopy which was normal I had a positive urine test for cancer and they saw what they believed to be cancer cells in my ureter so he said it was cancer and he needed to remove my kidney, ureter, and bladder. I wasn't given any other options and no other tests where taken. So I then went to a urologist at cooper hospital in NJ, he never examined me and also didn't do any further tests. He too said when there is cancer in the ureter the only option is to remove everything and again wasn't told about any other options. He too said he THINKS its cancer. If all these doctors are saying they THINK, shouldn't they have done frther testing to make sure it is cancer. Hope you can help. Thank you