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Would appreciate any guidance

daughterin_ca
Posts: 3
Joined: Mar 2019

Hi,

My head is spinning from doing so much research online, and am hoping I can get some insight from this community. My Dad, who is 72 had his kidney/ureter removed in April after being diagnosed with urotherial carcinoma. I think that is the type, I believe in "upper tract" (I have to tread lightly when asking questions). We were told it was non-invasive/low grade. I believe the size was extensive, but Dr. said the prognosis was very good, excellent, pending pathology. After the surgery, the pathology came back great, so our family was relieved. I was so stressed out about the surgery but very happy it went well and he recovered relatively quickly-went back to work soon after, and if you saw him you would never know he went though major surgery-to me when I see him it's like everything is back to normal. However, he just had his first post-op cystoscopy and they found two small polyps in the bladder. They will have to be removed in an outpatient procedure-Doctor said this is not unusual. I assume the polyps are cancerous-my parents think it's the same type of tumor that was on his kidney. I don't have any other information though because it was a quick appointment. I would like to think if the doctor thought this was some dramatic change in course/dire situation he would've mentioned that? When I research online I find very techincal articles and I don't know if the information I'm reading would even pertain to a case like my Dad's. I read somewhere that multiple tumors or a recurrence means a poorer prognosis, but I don't know if that only refers to cancer that originates in the bladder, not when polyps are found in the bladder after kidney removal. I guess what I really want to know is, does this change the stage from when he was originally diagnosed, and is this a marker to be concerned about future occurences or possibly a more agressive cancer. I am worried, but I guess that is what these three month follow ups are for. If anyone can weigh in on this or knows of a good resource I would appreciate it!

cubsfan9
Posts: 66
Joined: Oct 2013

Good Morning!

I cannot answer your specific questions, sorry!  As Iceman would say, it's "above my pay grade".

TCC (transitional cell carcinoma) or Urothelial carcinoma is somewhat different from "regular" kidney cancer and is less common.  Beware...google searches can lead to a lot of outdated information and statistics.  It sounds as if you want to learn as much as you can and to be able to support your dad.  He is lucky to have you!  I might suggest that you join smartpatients.com  Like this forum it is made up of patients and caregivers.  You have to sign up, but the site is completely secure and there are no 'strings attached' and no advertising.  Once you sign up and log in, type "urothelial carcinoma" or "transitional cell carcinoma" in the search box.  You will be taken to discussions specific to this type of situation and will also see sevral members who have this specific type.  It is another very helpful resource and you will be given up-to-date treatment information and suggestions.

daughterin_ca
Posts: 3
Joined: Mar 2019

Thank you cubsfan9, yes I want to do as much as I can, it's tough because he is very independent-my family is saying I don't need to be there for the surgery. I will check out the smartpatients site-I appreciate the suggestion!

Apaugh's picture
Apaugh
Posts: 821
Joined: Aug 2016

UTUC of the renal pelvis is what I had.  the old name for it is the TCC and most docs still call it that.   The reason you dont hear a lot about it is that while the bladder cancers are common, the type your father has is not.  Not alot of research on it and not alot of people to discuss it with.  Not alot of treatments.  

Smart Patients is a good site.  Dont get caught up with the kidney cancers on there.  Make sure you tell them it is UTUC or TCC of the bladder so they can lead you to the right people.  I am one of them.   They have helped me a lot.   The bladder page here does not help, the kidneys here are very supportive and empathize.   

Every 3 months or even sooner, your father will have to see the doc and have procedures done.  Depending on the stage and grade.  Dont miss the appointments and he can stay on top of it.  I am sorry your having to endure this stress.  It is not fun.   Keep us updated.

Hugs and prayers,

Annie

daughterin_ca
Posts: 3
Joined: Mar 2019

Thanks so much Annie! So I gather from what you're saying, the polyps they found could be a different stage/grade then original diagnosis? Does it make sense that doctor said this isn't unusual after he gave a great prognosis after the kidney removal? A friend told me it could possibly be pre-cancerous or not necessarily cancerous but then why would they have to remove them if that's the case. 

I see from your bio you've been through a lot, how are you doing now? 

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