I had another urine cytology test and a complete blood panel done at my primary care physicians office. I received the results today.
Negative for malignant cells
Transitional epithelial cells present
Predominately squamous cell present
Blood test were all in normal range.
The accuracy of a urine cytology test dictates the course of action for me to take in my watchful waiting (rather than immediate TURB or fulgerization) on my 4th low grade papillary recurrence. The prior report, done through my urologists office read positive for high grade. It was the first positive I had ever had even though I have had and initial and 4 recurrences of low grade verified after TURB and biopsy. Because of it being so highly suspect and my inability to get detailed description on what was seen by the lab I decided to have another urine cytology done. I knew this report would be negative for cancer cells and it has been verified. This information is important to those who have elected to do watchful waiting (rather than surgery). after 3 or 4 recurrences of low grade papillary TCC. Because of this forum site and the invovlement of Wendy, I became aware of certain alternatives and wordings to clarify urine cytology reports. This forum is invaluable to us all.
My understanding is that most urologists will also take a sample of tissue from the bladder muscle during a TURB to send to pathology along with the tumor. When I asked my urologist if there wasn't danger of "seeding" the muscle if no chemotherapy is given after TURB, he said we don't have any record of that happening. I now believe we should all have one installation of Mitomycin C right after TURB with the best recommendations of a bicarbonate of soda to neutralize the area for best effect from the Mitomycin. Of course, those "deep cuts' do cause us pain and distress afterwards that doctors don't address. While I am waiting to give another urine cytology sample and report, (this last urine cytology report after doing watchful waiting on a low grade papillary recurrence since February was reported as high grade for the first time). No details given on what was seen so I was not able to really know the significance of that report. Even though I tried several times to get more info from my urologist and the pathologist who signed off on the diagnosis, no response. Of course my urologist just wants to go in and "scoop it out again and send to pathology. I want to double check the validity of the report and the necessity of another "scoop out" time with another laboratory that gives details of what was seen in the sample. I am seeing my Primary Care physician today to give that sample. We need to receive the type care and attention that is best suited to the extensive research and experience we have had as a bladder cancer patient, interacting with other blc patients, bladder cancer specialists and research centers that give the most modern and up to date protocol and treatments for our particular type, grade and stage. We need a doctor and institution of like mind so we confidently work as team in our own care.
I was going to post a new question-topic about "burning" pain while urinating 2 weeks after my TURB but after having read the posts in this thread, I see 4 weeks is quite common so I'll just tough it out.
Rosie, I totally agree with you about the doctor's not relating to the post-op pain. Before the surgery he said: "I'm just going to go in a pluck it right out". I asked him if it wasn't better to go a little deeper to get a more accurate pathology report. He said: "Good question, I'll decide when I get in there and look around." He also told me he was going to inject a chemo drug into the bladder after surgery. I said: "To reduce recurrence and "re-seeding"? [See, reading these posts has given me the right questions to ask.] He said: "Right".
Well, they sent me home afterward with a bleeding penis and some gauze taped on (that lasted about 30 minutes) and a catheter, and some Percocet and told to "drink lots of water" He also said that he went so deep he was afraid to use the chemo drug for fear that it would pass through the bladder and into my abdominal cavity.
They really don't give you much in the way of what to expect your first few days. Luckly, I found this web site and was able to read what others had gone through and that made it a lot easier.
In the doctor's defense, I will say that when I called him on the weekend after the surgery (desperate), he answered my page (sounded like he was at a party) and said that I could call him anytime even if he wasn't on call. As I said before, I ended up in ER on Sunday, recatheterized and wiser as to what to expect after surgery. Experience is the best teacher, I'm sure someone has said.
With each TURB I have had ranges of pain and discomfort for 1 to 2 months afterwards. I also felt the abdominal discomfort, sometimes cramping, sometimes burning when urinating, sometimes passing blood clots, sometimes feeling pain throughout my who body. The doctors would proudly say "we got some good deep bites!" Is it no wonder that I have chosen to minimize the number of surgical invasive procedures to which I will give consent. When I hear the doctor encourage me to have yet another TURB by trying to minimize the seriousness of the procedure by stating to me "well it is just a simple matter of scooping it out." I have found none of the urologists really relate to the aftereffects of pain, burning etc. I will tell them of my problems and I hear things like "hmmmm" or "drink lots of water" or just they stare at me like I'm a wimp. I am also instructed to not lift anything for 2 weeks to a month. That precludes my grandchildren running up and being lifted up in my arms. I also gave some history and facts of TURB's under the heading of Bladder Spasms in answer to Bob's questions.