Low grade ureter and renal pelvis kidney cancer diagnosis.

I’m feeling optimistic! The dr did explain that the possibility of the tumor coming back after the laser treatment was very possible. But, I appreciate his conservative approach to try and spare my kidney. We’ll give the laser treatment, and possible Jelmyto treatment a try. He emphasized the low grade and non invasive nature of my cancer and said there should be NO rush to remove my functioning kidney right now. It ABSOLUTELY is important to get second and even third opinions!

I so agree with you @sally0526! I'm glad that you sought another opinion. If only more people would take the time for more than one opinion.

It sounds as if this doctor looked at your issue from more than one perspective. He took into account that it was of a low grade and noninvasive. Seeing the big picture is so important in dealing with cancer. I'm really glad that you found a doctor who sees the big picture.

Is there a date set for the laser procedure?

The surgery coordinator called late yesterday and I missed the call. I will call today to get a date. By the way, I also have an appt with a Nephrologist next Tuesday. A couple of months ago (before the UTUC diagnosis), I mentioned to my PCP that my blood pressure had been fluctuating (anywhere from 110/60 to 178/90) and he took a blood test for my renin level. Renin is an enzyme secreted by the kidney and it helps regulate blood pressure. My level was VERY high. I asked my urologist about it and he said that he preferred I see a Nephrologist about it. The first appointment was 2+ months away, but I spoke to a PA then who said it wasn’t an “emergency” so it could wait. I had another renin blood test a couple of weeks ago (my PCP ordered it) and it has come down a lot, but is still high. I am keeping the appt with the Nephrologist to get his opinion on all of this (the renin level, UTUC, and laser procedure). So this will be my THIRD opinion. I’ll keep you posted….

That's great news, @sally0526. I'm glad that you are not leaving any stone unturned but seeking out advice at different levels.

I look forward to hearing from you again.

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

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.

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.

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. 😊

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.

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. 😊