My husband's favorite holiday, after Christmas, maybe even tied with Christmas, is
Halloween. Unfortunately, over the years our family has had some pretty traumatic experiences,
right by Halloween.
Halloween 2020 went down in the books as adding to that trauma.
I
was anticipating walking into the urologists office, for the doctor to
go over the results of my CT scan (results were clear 😲 even though you will find out in this post I have bladder cancer), tell me I must have a polyp causing
the bleeding, and if it gets worse, call him.
Article: What is a CT Urogram (CAT Scan)?
Obviously I hadn't done my homework. Cancer was nowhere on my radar.
What is a Cystoscopy?
A cystoscopy is the gold standard test to rule out bladder cancer .
If there is blood in your urine, eventually you will get a cystoscopy,
or you should be sure to ask for one if they are not forthright to give
you one. Even if a CT or ultrasound comes back negative for cancer, you
should still get a cystoscopy.
If you are going in for a Cystoscopy - bring someone!!! After you read about my experience found in the article below, you will understand why. It's for support, in case you find a tumor. Write down potential questions beforehand. Let your support person know, they should be ready to ask questions, and write down answers. If a tumor is found, believe me, you will not be in a position to understand or remember anything that is said, after you hear the words tumor or cancer.
First off, lets talk about what a cystoscopy is.
A cystoscopy (sis-tos-ko-pee) is a procedure that allows your doctor to examine the lining of your bladder and your urethra, which is the tube that connects to your bladder and carries urine out of your body.
Many people call a cystoscopy a cysto, for short.
A hollow plastic tube called a cystoscope or resectoscope is passed through the urethra and into the bladder. It is equipped with a camera lens, light, and a hollow tube that can pull urine out, and also put saline in (saline is a sterile liquid made up of water and salt. It mimics fluid found in our body like tears). The saline is used to to enlarge the bladder and help visualize everything.
The saline is also used to help get a good urine sample for a urine cytology. When your doctor is doing the cystoscopy they will spray saline in your bladder, pull out urine and spray it back in again. They will try and agitate the cells in the lining of the bladder. They want to get as many cells in the sample as possible, so if there are any cancer cells, it would be obvious to find them. Your doctor is doing this usually without you even realizing he/she is. It doesn't hurt at all, and it's done very quickly.
Article: Urine Cytology and Bladder Cancer
A cysto can be done outpatient at your doctors office, done as an outpatient procedure with sedation, or under general anesthesia (like when you have a TURBT).
Article: What to Expect with a TURBT
What is the Difference Between a Flexible and Rigid Cystoscopy?
From my experience, most cysto's are done in an exam room at your urologists office.
An outpatient cystoscopy, like the one done in your doctors office, is done with what's called a flexible cystoscope. It's much smaller and more flexible than the one that is used during a TURBT surgery. It's made of plastic so it's flexible. Above you can see a picture of a flexible cystoscope.
The
cystoscope/ resectoscope used during a TURBT is called a rigid
cystoscope. It's very rigid, made of metal, and much larger, allowing
for more instruments to be used (for burning, for cutting, and
retrieving the tumors). The above picture is of what a rigid cystoscope
looks like.
For an in-office cysto, they start the visit like any other urologist visit. They will ask you a few questions about your urinary system (have you seen any blood, pain, urgency, frequency, while urinating etc.), take your weight, maybe some vital signs, pee in a cup.
Also, you might be given a one-time dose of an antibiotic, that is what my urologist oncologist does for me. It's to help prevent a UTI (urinary tract infection) from developing after the cysto.
They will have you sign a paper (called informed consent) that says the doctor has educated you on what to expect with a cysto and the risks and benefits of doing it. As you will see below, my first urologist, Dr. B. did not do this.
My current doctor, Liam McLeod always takes the time to answer questions and educate me on everything going on. Please choose your doctors wisely! This is a REALLY long battle. You want a good doctor working for you, and one that you like and one that you trust. You can choose your healthcare providers, and can change them at any time as well.
Article: What Type of Doctor Should I Choose for Bladder Cancer Treatment?
If you want more information about a cystoscopy and what to expect please read the article listed below.
What to Expect
In preparation for the procedure, they will have you undress from your waist down, and you will be given a cover to put over your private parts once you are on the exam table. The exam table is raised up, for the convenience and comfort of the doctor and nurse, getting ready for the procedure.
You will be cleaned with betadine or chlorhexidine.
On a man, the area being cleaned will be the tip of your penis.
For a woman, your legs are put in stirrups like at the OB/GYN. The labia majora and minora will be spread, and the labia and all surrounding tissue around the urethra will be cleaned. Yes, it's a little cold. Here is a quick review of the female anatomy if you don't remember:
They will then apply a local anesthetic/lidocaine jelly to numb your urethra (this is also chilly), and a titch uncomfortable. I've been told they insert the numbing jelly into the urethra.
A women's urethra is about 1.5 inches long. A man's urethra is 7 to 8 inches loooooooong! That is quite far for that scope to go before reaching the bladder. OUCH!
Sometimes between the woman spreading her legs, and trying to pull back the labia, it can be difficult to find the urethra. If you cough once, or bear down, it can help the urethra be more visible.
Here is a quick review for the male anatomy as well. Get to know your prostate boys! That sucker can make cystoscopes and characterizations more difficult.
When the cystoscope goes in the urethra, there is some lidocaine jelly that is taken inside, and will hopefully help numb the whole urethra better.
Before the procedure, the lidocaine jelly will be left on your urethra anywhere from 5-15 minutes. I think this fully depends on the schedule of your urologist. The longer the gel sits, the more numb you will be (the benefit would be maxed out around 10 minutes). If you are concerned about the pain, I'm sure you can specifically request waiting longer for it to really get more numb.
As you are waiting for the lidocaine to do it's job, you are on the exam table, laying on your back. At least women are, because are legs are in the stirrups.
Because of the anatomy of a man, I'm assuming they could sit instead of lay down.
I have tailbone issues, and this was the most painful part for me, because of how hard exam tables are. But I was able to wiggle around a bit to get partially on my side, as to not contaminate the clean area, or to have the gel slide off my urethra. My husband always stands at my side, so I don't accidentally fall off. The exam table by this time has been raised up pretty high, getting ready for the physician to come in and start the cysto.
Try Your Best to Relax - Cystoscopy's are Not Too Bad
I have now had 9 cystoscopy's (as of Feb 2022). I'm 16 months into this battle. Truly, if you are worried about getting a cystoscopy, please don't be! They are not that bad.
However, if you have a bunch of anxiety about going, be sure to take something for it. Have someone drive you. Some people have serious anxiety about medical procedures. You are going to have a lot of these, and you don't want all these little trauma's adding up to some serious mental health problems later.
Mental health and cancer is not often talked about. It should be! There is so much stress and trauma that we go through. If you can avoid that trauma, by taking a medication for anti-anxiety - do it!!
There is a possibility, that if you find a doctor that is kind and trustworthy, and as you get used to these, maybe your anxiety won't be so high. Maybe eventually you will feel like you don't need to take anything.
But if that isn't possible don't have any guilt or shame about it. We are all doing our best, and in fact you should have the opposite of shame. You are honoring what you and your body needs, and that is always a good thing. We need to get through this with the least possible trauma as possible.
One helpful tip.... REMEMBER
TO BREATHE!! This is going to help so much with this process. It will
signal your body to try and relax. If you clamp down on that urethra, by stressing out and guarding, it
will just make the whole thing so much more difficult and painful.
I was an IV nurse for 10 years. It was so difficult to get IV's in people that were stressing about it, and people that would hold their breath and guard against the pain. The same goes for this procedure. You have to try and relax!!
Try and relax your urethra, like when you are about to pee. I know it's hard! Something is being shoved up there, instead of pee coming out. It's supposed to be a one way road, but if you have bladder cancer, that is no longer the case. Your urethra is going to be accessed ALL THE TIME!
Do your very best to imagine your urethra relaxing. It will make the procedure tolerable if you can relax.
One man said breathing is the only way he gets through this procedure. He said that the doctor and the patient count to three. The patient takes a deep cleansing breath, and then they put the scope up as he is breathing out. He says that breathing like that really helps him be able to get through it.
I guess a cystoscopy can be especially difficult and painful for men. Between getting past the prostate and having such a long urethra, it can be a little rough. Women have a much shorter urethra so it's just not as bad for most women from what I've heard, and from what I've experienced.
But that being said, I have seen some reports of women that REALLY have a lot of pain from this. We are all built different, and we all have different experiences. Some people need to be put under anesthesia to have any kind of cystoscopy done. They can't do it at the doctors office.
That is okay! Don't put shame or judgement upon yourself. If you get through it, then we call it a success!
It doesn't help to compare yourself to others. Love you and support you the best way that you can. Honor what your body is telling you, and what you need, even if that includes going under anesthesia to get the cysto done.
For me, after the numbing gel is working, I think the pain is comparable to a urinary catheterization when you go in for surgery or have a baby. There was some pain, but it just wasn't that bad for me. Nobody likes scopes shoved places they shouldn’t be.
The
only anxiety I have concerning the cystoscopy now, is wondering if
there are going to be new tumors. The actual pain of the procedure
doesn't bother me at all.
It takes a little getting used to, the feeling of the scope moving around once it's inside your bladder. It's a little irritating and uncomfortable to your urethra. It feels wrong, like that camera doesn't belong there. Remember to keep on breathing! I distract myself by getting my geek on, and just enjoying watching what the inside of my bladder looks like. It's so cool!
My first cysto was done with Dr. B.
I was given a sheet to sign, that states that I have been informed of all the risks involved with a cysto. This sheet is called informed consent, meaning you have been informed of the risks and benefits of the procedure, and you consent to have the procedure done.
I told them I was not going to sign that until I have actually
had a conversation with my doctor about a cystoscopy. I was not impressed with the education these people were NOT giving me.
They must not have reviewed my CT scan yet. It's clear. I saw the results on my patient portal. If the CT came back clear, doesn't that mean I didn't have to have the cysto?
Nope.
They still wanted the scope, even though the CT was clear. A cystoscopy is the gold
standard test for bladder cancer. If
it was a polyp in the bladder, we would be able to see that as well.
They wanted to visualize the lining of the bladder and urethra, and rule out bladder cancer. The CT is really
good at catching later stage cancers, but not the earlier stages, like mine.
So
the nurse assistant starts to prep me for the procedure. I explain to
her that nobody has ever discussed this procedure with me before. I
would like to know more, especially the risks involved.
She looked at me like I was speaking a foreign language. She told me I would need to wait until the doctor comes in. She didn't have the answers for my questions.
Dr. B, comes in, acting very rushed, looking at his watch at least once if
not twice in less than a minute. He wants to immediately start the
procedure. I let him start his preparations, but start pelting him with
questions about the scope. He hasn’t ever discussed this with me. I want
to know more.
He seems annoyed that he has to spend time
educating me about this. I’m not happy about how all this is going down,
but I’m a compliant patient and go along. He quickly and superficially
answers my questions, which does not help with me feeling more anxious about all of this.
I had asked my husband, who is a physician, about this beforehand, so I had a basic understanding. But I wanted to be educated from someone who does this all the time.
I was very anxious, annoyed, and disappointed all at the same time.
My urologist gets the scope into my bladder, going
through the urethra.
The TV screen that shows the video image of my bladder is huge,
so we can clearly see everything. He had about 20 seconds of not being able to get the scope in, trying to find the opening to the urethra. At one point I see my clitoris. On that screen it looks like it's a foot and a half long ! LOL! 😂
The scope enters the urethra, and very quickly is in the bladder. He shows me where the ureters come out of my kidney. It was really cool. They open and close as they let urine come into the bladder. It looks like they are winking at me.
I’m such a science geek, and was totally
interested in all of this.
Suddenly, there is this beautiful
pink coral reef looking thing, waving around, just like under the ocean.
It takes up the WHOLE image of the TV, so it looks HUGE! During the
scope, the doctor shoots normal saline (like water with a little salt in it) in the bladder to expand the bladder so
he can see around. The saline makes this beautiful mushroom-shaped
looking thing, gently sway back and forth, look just like I would imagine
coral reef or colored sea weed in the ocean to look like.
Nothing had registered in
my brain yet. I’m a nurse. I know the anatomy of my urinary system.
There is nothing in my urinary system that looks this way.
What is that?
Suddenly Dr. B says “Yep, that’s cancer” and he looks at his assistant, and looks at me and... smiles.
I’m not kidding. My mind doesn’t even know how to process this. It’s like I’m in a dream.
Did
he just say CANCER? Did he just smile? Why is he excited or giddy about
this? This is wrong. Everything is wrong. He has to be WRONG!!!
Somewhere
in the back of my mind, I am appalled that my doctor is excited to have
found cancer inside my bladder. I look at the assistant, and she looks
really worried for me, and so sorry that I’m going through this. She
looks at Dr. B like she can’t believe that he is acting excited.
Later, when I thought back to this experience, I think Dr. B was excited to be able to show his nurse assistant what a
bladder cancer looks like. Unfortunately, he let this excitement
come out at the most inappropriate and cruel time possible - when he’s
telling a young, 41 year-old mother, that she has cancer.
Additionally,
it was totally inappropriate for him to use the word cancer in the
first place. Yes, it looked like a typical bladder cancer. Yes, it was
most likely cancer, but there was no definitive test yet to confirm
that.
As a medical professional, he should have used the word
“growth” or “tumor” and said that most likely it is cancer, but we won’t
know for sure until pathology confirms it. He should have given me some basic information about what this means, what treatment options are, why he believes that this is most likely cancer, and the type etc.
He pulls the scope
out of my bladder. As he’s cleaning up, he asks me the same questions
that he has already asked me at the appointment a week ago, and the
questions that I’ve answered two other times in my chart. That is 3 possible other times for him to know the answers to these questions. It makes him look incompetent, and like he doesn't care about me as a patient. I'm not impressed.
To me
this means, he ran into this room, knowing that he was going to do a
scope on someone, but didn’t even review my chart. *sigh*
Are you a smoker? No
Do you live with a smoker? No
Do you have a history of cancer? No
Then he gives me a “hmmmmmm. That’s strange. Usually bladder cancer happens in people that smoke.” This is the second time he has said these exact words to me.
He
signs a paper and says “Ok, well, we need to get this thing out. I’ll
have you talk to my receptionist to schedule a surgery.”
Then he walks out, and doesn't ever come back to talk to me during this visit.
I’m not kidding.
Bring a Loved One with you to your Appointment
I
came to this appointment by myself, because I was assuming that this
was nothing. If someone else was with me, I’m sure they would have said
something to the nurse or the doctor, demanding more information. Demanding that he tells us about the surgery. Demanding that he tells us why he thinks this is cancer, and what that means for me. How big is the cancer? How serious? Am I going to die???? What are the risks of the surgery? Is this the best option for me?
I wasn’t ok. It’s like I was watching someone else go through this. I felt like I was not in my body. I was going through the motions of getting dressed and walking out, but I was numb.
BAM - I'm in the first stage of grief - SHOCK. I'm absolutely paralyzed at hearing this bad news. I'm numb and can barely function.
Article: Cancer and the 7 Stages of Grief
How can you tell someone they have cancer and then
send them out the door? How can you tell someone to come and have a
surgery without talking to them about what the surgery entails? What about the risks
and benefits? What are the next steps? What are the chances of me dying
of bladder cancer? What type of cancer does he assume I have? Why does he think that?
WHO DOES THAT???
Dr. B in Medford, Oregon does that. He's good at being a surgeon (the cutting part) and terrible at being a human, and a physician.
I was reeling. It felt like I was going in slow motion. I didn’t even know how to process this.
I go to the receptionist desk, and schedule my appointment.
I get to my car and close the door.
Finally, somewhere I can think and feel what I need to.
I start sobbing.
Sobbing eventually turns into yelling. I was so angry at my doctor! I was so angry at that word – cancer!
Did that just happen to me? How can I possibly let a doctor touch me again who treats people this way?
C – A – N – C – E – R
What a terrifying word.
Do
you remember what I talked about with my first appointment with this doctor (see article below) ? When he was an hour and a half late? Dr. B said he was so late
seeing me because he had spent so much extra time with his last patient
– WHO HAD CANCER!!! 😒
Article: What to Expect on your First Visit to the Urologist
Where was that kind and caring doctor, who spent time with their patient, giving information and compassion? I was now the patient with a new cancer and he dismissed me like an old newspaper.
I called my mom. I couldn’t talk to my husband yet. How do you tell your husband you have cancer? How do I even start to process the experience that just happened to me?
I
let it all out. I cried, I yelled, I sobbed.
My mom cried. She was shocked
and angry. She wanted to give that doctor a piece of her mind. Somehow it was comforting to think of my my mom go all mama bear on this dude.
I know
that more than anything, we both wished we could just hug this out and
cry together. But she’s a few states away. Having a phone call was going
to have to do for now.
She was worried that I was not going to
be able to drive home. But after talking with my mom for a while, with
her helping me to start processing all of this, and make a plan of
attack, I was ok enough to get home.
I was determined not to
tell my husband that evening, until after the kids were asleep, and we could have some time
to talk about this and process it.
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