I had surgery on Tuesday. This was the worst one so far for me for several reasons. I went for my regular cysto at my doctor in July. He said I had a tumor with 2 areas of concern. On my paperwork is was listed as 3 lesions, measuring 8mm, 12 mm and 15 mm size. I was to have a cysto, TURBT and a retrograde pyelogram. My surgery time was 3 pm with an arrival time of 1pm. Everything seemed fine but the surgery was delayed and I actually didn't go back until almost 7pm. When I woke up in recovery I was coughing non-stop, then my calves in my legs got severe cramps in them and I could not be still. Then being in and out of awareness I heard my doctor say he was giving me a chemo treatment which I have had before. They clamped the catheter for an hour and I was in severe pain all over. Then they decided to admit me overnight which I have never had to stay. My boyfriend was with me and when I got to my room he said the doctor said there had been another tumor that was he didn't see on the cysto that was under a hidden pocket?? or flap???. They put a big chemo sign on my door with instructions to wear 2 pairs of gloves and big red hazmat sign on my door as well. They had my regular iv and 2 huge bags of solution to wash my bladder out. On my catheter they connected ports, 3 as best I could see and on the hour every hour they would come and empty my bag. The iv's were on a fast drip. My bp dropped to 115/57 at about 3 am. All I remember the nurse giving besides my pain medicine was an injection of potassium. This is Saturday and I am waiting on the doctor to call with my pathology. He is on vacation currently but said he will still call me when he receives results, he has been a great doctor. He said I needed to make an appt. at his office in 2 weeks and we will discuss the chemo. I am at home and usually only take a few days off to feel better. I was unable to walk properly for 3 days and my calves are still sore although it is subsiding. I still have the bladder spasms and my back is sore in my kidney area. Of course I am worried about the results because he doesn't know how long that tumor was in and had time to grow or if it has been able to penetrate the lining. I always knew that someday I would have to make some hard decisions concerning which direction I want to go in with treatment. I was diagnosed in 2014 and I am currently 53, almost 54. I have all sorts of things going through my head and realize that this cancer is not stupid, it is relentless. I was mostly wondering if anyone else has ever had a tumor that was found during surgery that was not accounted for? I am wondering if he found it in the tubes leading to my kidneys and saw it on the dye xray of my kidneys? Thanks in advance.
First I want to say how sorry I am for your pain and difficulty.
So much of this bladder cancer trip is education and experience ... and fear. For me everything has gone pretty much as expected and I have done well, but there has been a lot of fear and uncertainty that has played havoc with how I feel. I use this as an introduction because I had a retrograde pyelogram and it made me feel like I was going to die!
I had some type of reaction to the retrograde pyelogram that caused pain and spasms; terrible pain, vomiting, bloody urine, couple of days in the hospital. My doctor said it wasn't normal, but a small percentage of people end-up having pain and spasms. It was terrible, but it was only a few days. The good news is that it was a reaction to the procedure and it had nothing to do with the severity of my bladder cancer.
Two years after TURBT and BCG I had a second tumor - this made me feel terrible and once again worry about the worst. I had a second procedure and a second round of BCG. I'm now 18 months NED. But, what I know is that there still are going to be ups-and-down ... part of this disease is good news and bad news; the important thing to remember is that this disease is treatable. There will be disappointments and discomforts and trips to the hospital but we need to work on controlling the fear and keeping an "up beat" attitude. It all seems minor to the professionals because they've seen it before; it is fearful and worry some to us and our families because we are going thru it.
Every procedure, every doctor's appointment makes me feel like I'm in the process of dying from bladder cancer.
What I have to constantly tell myself is that I'm not dying but that I'm treating bladder cancer. It's worry some and often painful, but I'm fighting and it is a winnable battle. Good Luck to you, you'll be in my prayers.
The following user(s) said Thank You: Knifedealer, dna22714
I went to my doctor for my post op. I had 3 high grade tumors, the largest was in the neck of my bladder and it was the one he did not know was there until surgery. I will do 6 rounds of BCG starting September 13th. Then another cysto. My doctor said he is not fully confident that the treatments are going to help for various reasons. The main being that because of the location of my tumors he said it will be hard to get enough BCG to them. I asked him my prognosis for this cancer. I was originally diagnosed in 2014. They were low grade tumors then and the BCG did help. I have had a couple of surgeries since then with only one that showed cancer. This time was different. Anyway, he said that if we can't slow the progression and the fact that they were high grade we might have to discuss removing my bladder. I am not prepared for this and I am not sure I will agree to it. It is not vanity, it is more a sense of why bother? I know it can come back in others areas of my body. I know they can make a new bladder for me with a long and difficult surgery and recovering time. I know there are some people that are born warriors, they will do anything and everything to fight. I have been battling this since 2014, my life has changed. I have a wonderful man in my life that is understanding of my situation and has pretty much accepted I may never feel romantic again. I have to wear pads to work because when I have to go, I have to go. I am just throwing some feelings out there, maybe in time I will feel more like fighting again. I have watched some very good friends in my life wither away from cancer and prolong the process as long as possible. I am glad they have that will. I think this surgery has just been especially hard on my body and a lot to take in. On the outside I look unworried, on the inside it is constantly on my mind. Thanks all for letting me rant. I will check in again soon. Well wishes for all of you!!
Let’s take this one day at a time First we will assume that the BCG will work . In many cases it is highly effective particularly for high-grade bladder cancer . If BCG fails and the recommendation is for a radical cystectomy that is not the end of the world . If the cancer has not spread bladder removal is a sure cure . There are multiple options after a radical cystectomy but you are certainly not at the point where you need to worry about this . Let’s get through the BCG and see if it works.
It is hard not to be discouraged at this point . But you have a lot to look forward to with an understanding companion and a good relationship. It is worth fighting for .
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Rants are allowed. "Things when going well are never quite as good as they appear nor when things look bad they are they are never quite as bad as they appear." Credit whomever started that! We will listen. You have lots of life ahead!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.