diagnosis

5 years 23 hours ago #51351 by Hogans
diagnosis was created by Hogans
About 10 days ago . I noticed blood in my urine. I saw a urologist who had me take a CT scan and a cystoscope and saw a mass that he thought was about 2 or 3 centimeters and a few microscoptic places. He discussed this with another urologist that does Robotic and laproscopic surgery and that the surgeon could burn off the microscopic places and then remove the mass with enough margins to be clear because of its location in the upper corner of my bladder. He called this segmental or partial cystectomy. I am very nervous and concerned.

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5 years 15 hours ago #51352 by Jack R
Replied by Jack R on topic diagnosis
Hogans,
All of us here with bladder cancer started out as concerned and confused, and found some answers and hope here. We all start off not understand all the terms and options that are considered. As a patient also, all I can offer is my thoughts - perhaps suggest some sources and some questions for your doctors.

It sounds like you are suspected of having early stage, caught early, non-invasive BC (bladder cancer) , often called 'superficial bladder cancer. Caught early and treated, the outlook is very good. The trouble with BC is that it tends to come back and need additional treatment, thus you may need follow ups for years. It sounds like you are in a good place to be, everything considered.

A couple of terms you use seem to conflict. If, like me, after the word 'cancer' was spoken, the rest may have gotten kind of fuzzy.

One of the next steps is to take bladder biopsies. Tissue will be sent to pathology to determine the stage and grade of the cancer, which will help determine future treatment options. Often done as an outpatient, under sedation, the visible cancer is removed in a surgical procedure called a TURBT - Transurethral resection of bladder tumor.

Quoting from the source provided below:
"Transurethral resection (TUR) with fulguration: Surgery in which a cystoscope (a thin lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end is then used to remove the cancer or to burn the tumor away with high-energy electricity. This is known as fulguration."

A partial cystectomy is a different procedure from a TURBT. I'm not sure what is implied. You can read the difference in the document below.

You will know much more once the TURBT is done and the pathologist has reported. You are at the beginning stage of being treated - the information gathering stage.

You can read lots of ideas on the net. Stick to major reliable sources such as major cancer treatment hospital pages. The source below is from Cancer.Gov it has a lot of background info on many pages and describes a whole range of issues. Individual treatment will vary.

This is a good site to come back to with specific questions and ask about what others have experienced. There are people here who have dealing with BC far longer than me who I have found very helpful. BUT always take your questions and concerns to your doctor, and make sure your questions are completely answered.

One starting point for information:
www.cancer.gov/types/bladder/patient/bladder-treatment-pdq
Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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5 years 12 hours ago #51353 by Nicke
Replied by Nicke on topic diagnosis
Hogans,
I am confused about what the doctors have told you about treatment plan. It does not sounds like the normal way to go. First thing to do is always a TURB ( resection of the toumor) and sent samples for examination. Not until the path report is back you will know for sure IF it is cancer, and if it is cancer; type of cancer, stage and grade. It is not possible to make a treatment plan until you know this! Where are you located? I suggest that you go for a second opinion to a urologist spezilied in bladder cancer at a major hospital.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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5 years 9 hours ago #51358 by Hogans
Replied by Hogans on topic diagnosis
Thankyou for your response, I don't know what the biopsy is. It sounded like they would find out during surgery but they said the mass or tumour was located where it could be removed segmentally with clear margins also followed with a six week course of BCG.

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5 years 9 hours ago #51359 by Hogans
Replied by Hogans on topic diagnosis
I am located in Alabama. I heard the words Urothelia Papillary but I don't know what the biopsy says. My understanding is that the grade and stage will not be known until during surgery.

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5 years 8 hours ago #51361 by Cynthia
Replied by Cynthia on topic diagnosis
Hogans sorry you have to be here but welcome to our community. The fact is that no one can tell you what you are dealing with by just looking at it. Stage and grade can only be determined by a pathologist looking at a cellular level. Many urologists have been doing this so long that they have a good idea of what they are looking at but the fact remains that unless they are superman and have microscopic vision they can't be 100% sure until the pathology comes back.
Getting a second opinion is always a good idea when you receive a cancer diognosis. I don't know what part of Alabama you are in but what you need is a doctor that does bladder cancer as thier main practice you will usually find these at University Hopsitals if you are in Northern Alabama Vanderbilt is excellent.
Good luck and we are here if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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