John Morley survived T2 Muscle Invasive Bladder Cancer | cystectomy | prostatectomy | splenectomy

DESCRIPTION

What John Morley originally thought was a urinary tract infection turned out to be a diagnosis of bladder cancer.  At first, he was told it was a mild form of the disease.  Then the diagnosis was upgraded to T2 Muscle Invasive Bladder Cancer, requiring a radical cystectomy meaning he would need to get his bladder removed.  His care team next told John he would also have to get his prostate taken out.  Next a mass was detected on his spleen, which meant that it, too, would have to be removed.  Treatment and recovery were tough, but he now urinates into a bag known as an ileal conduit, has become acclimated to it and leads a healthy lifestyle.

John Morley of Haymarket, Virginia is a Navy veteran who enjoyed scuba diving, hiking and other outdoor activities when in late 2021, he noticed blood in his urine.  He sought medical attention with his primary care physician, who upon learning of John’s symptoms, referred him to a urologist.  The urologist called for cystoscopy, a procedure in which a camera is inserted in the patient’s urethra, and based on its results, said a biopsy would be needed.

John received a blend of bad and good news.  He was told he had bladder cancer, but because it was T1 Non-Muscle Invasive Bladder Cancer, the cancer had not spread from his bladder.  John and his wife felt like celebrating and went out to dinner.

However, a short time later, John Morley was called back into the doctor's office.  He and his wife were told a followup check of his pathology report showed his cancer had been upgraded to T2 Muscle Invasive Bladder Cancer.  Not only did this mean John would have to undergo a radical cystectomy to remove his bladder, but the procedure would have to be preceded by two or three months of chemotherapy, a regimen that would include cisplatin and gemacitabine.

As he wondered what life would be like without a bladder, the news for John got worse.  He was told he would have to undergo a prostatectomy for the removal of his prostate.  Then a mass was detected in his spleen, and the spleen would have come out as well, all three in the same surgery.

The multi-faceted surgery was a success, but John had to decide how he was going to urinate.  Over two other options, he chose an ileal conduit.  It was attached to his stomach, close to his navel.  The urine drained into a urostomy bag.

Following the operation, John relied on walking to help him slowly regain his strength.  He has a good command of his use of the urostomy bag, and though it wasn’t what he enjoyed pre-diagnosis, John Morley has returned to a healthy lifestyle that includes scuba diving.

Additional Resources:

Support Group: The Bladder Cancer Advocacy Group: https://www.bcan.org

John Website: https://www.beatbladdercancer.org

TRANSCRIPT

Bruce Morton: This is the Cancer Interviews podcast, and I’m your host, Bruce Morton.  Our guest on this episode has survived a diagnosis of bladder cancer, but his survivorship came at a high price, as his bladder was removed.  He is John Morley of Haymarket, Virginia, and this is his story.  Now here he is, and John, welcome to Cancer Interviews,

John Morley: Thank you for having me.

BM: Before we get to your cancer journey, John, we would like to learn a bit about you and your life away from cancer.  If you would, tell us about where your from, what you have done for work and what you like to do for fun.

JM: I am originally from California, but I have been living in Haymarket, Virginia for about 30 years.  I am a Navy veteran.  I spent seven years in the military, and most of my civilian career has been in the technology and marketing sectors.  These days I work for a multinational tire company.

BM: John, there was a time in which cancer may have been the farthest thing from your mind.  And then something abnormal happened, something that began your cancer journey.  What was it?

JM: Back in late 2021, early 2022, I noticed that when I urinated that it wasn’t looking quite right.  It looked a little bit off-color.  It wasn’t something that was blatantly red or bloody, but I noticed there was a bit of discoloration, it bit pinkish.  Being a typical guy, I ignored it of course.  I thought it would go away, but much to my surprise, I learned it was much more than I thought it was going to be.  At first I thought it was just a urinary tract infection and I scheduled something with my primary care physician.  I tld him about the symptoms and said  saw some blood in my urine.  He thought it might be a UTI, and decided to run some tests.  Upon doing so, he said the tests came back negative, but referred me to a urologist.

BM: What happened next?

JM: I went to the urologist and explained my symptoms to him.  They did some blood tests on me.  Apparently in the blood tests they saw some things.  They wanted to go a bit deeper and scheduled a cystoscopy.  If you don’t know what that is, they take a camera and they put it in one’s urethra.  That was quite the experience.  There was no anesthesia.  It was handled on an outpatient basis.  They told me to sit and relax, then they inserted a camera up my urethra and into my bladder.

BM: Was that painful?

JM: It was more uncomfortable than it was painful.  I thought it was funny when the care team told me I will feel the urge to urinate and you are going to want to tighten your muscles.  They said I shouldn’t tighten up because that will only make it worse.  They had this big jumbotron television where I could watch this camera going into my urethra.  They just put the camera in and I looked away because it was just too weird to see that happening. 

BM: Was that what led to your diagnosis?

JM: I am watching this and my urologist is navigating down into my bladder.  I don’t know what I am looking at on the screen.  I am just seeing a bunch of blobs.  Then, in a very matter-of-fact sort of way, he looked at me and said, “Oh yeah.  That’s cancer.”  It kinda threw me.  I was a bit taken aback by the way he said it.  I think he saw my reaction and he may have backpedaled a bit and tried to talk me off the ledge, but said I would need a biopsy.  But first I had to go in for a TURVT.  That’s where they go in, do a surgery, then do a biopsy on what they removed, and he scheduled me for that. About a week later, here I am in a hospital undergoing general anesthesia to get this TURVT process where they removed the mass of the tumor out of my bladder.  What they discovered is I had a 3cm tumor in my bladder that they biopsied out.  Sure enough, about two or three days after the surgery, my urologist called me and my wife in, and told us there is cancer in the tumor.  However, he said he saw it as non-muscle invasive bladder cancer.  I asked what that meant and he said that meant the cancer was contained to the bladder and it hasn’t protruded through the bladder to the muscle wall.  He added there are many treatments for this, including BCG therapy.  They put it into your bladder and do multiple treatments and your body, in fighting this BCG virus, also fights the cancer, almost like immunotherapy, and he said it is very, very effective.  I was encouraged, but still consulted Dr. Google and tried to figure ot what this all  meant.  If it was a later stage, I figured I was going to lose my bladder, but I was relieved when I was told the cancer was confined to my bladder and I will be treated with BCG therapy.  However, the urologist said he would send my pathology results up to Johns Hopkins (in Baltimore, Maryland) because he just wanted to get a second opinion on this to make they got it right.  I thought that was a terrific idea.  But then I got a call from Johns Hopkins, and they said they would like to schedule an appointment with me for me to come up so they could go over my pathology results.  So, a few weeks later, we went up there and met with the surgical oncologist.  He was looking through the information had gotten from my urologist, and said he would concur with my doctor in Virginia that this was T1 bladder cancer, restricted to the bladder, and I would be using BCG therapy.  It will be very effective and everything should be fine.  He added the procedure could be scheduled at Hopkins or with my guy in Virginia, and reassured me that I would not lose my bladder.  So, my wife and I left Hopkins, we are feeling pretty good and we went out for dinner, almost to celebrate the news that my cancer wasn’t as bad as it could have been.  Then, the next day, I am driving home.  I was just pulling down my street and I noticed on my call ID that there was a call from Hopkins.  I thought it was the oncologist caling to follow up on something.  The doctor asked me to let him know when I would be coming to a stop.  So, I pulled into my driveway, and he said he took another look at my pathology report and concluded that my cancer was far more elevated than we first thought.  He said I was definitely a T2, with muscle invasive cancer.  By that time I had done some research and said that sounds like my cancer had spread and the doctor said it had gone through the muscle area.  He said the cancer had to be treated very aggressively, which meant the BCG therapy would have to be preceded by two or three months of chemotherapy.  After that would be a radical cystectomy in which my bladder would be removed.  Now, this news is hitting me like a ton of bricks.  Then he added it is also necessary to remove my prostate as well, that and surrounding tissue, just to be safe.  This was happening in February 2022.  He said the earliest they could get me in for surgery would be June, but first would have to be the chemotherapy regimen.  Then there has to be time to recover from the chemo before the surgery.  I have a scar that goes from my sternum to my groin.  He said they also needed to run some MRIs, some CTs and do some more imaging.  So, I got some more imaging done.  After further tests, they found a mass in my spleen.  He didn’t know if the mass in my spleen was cancerous, a fairly large mass, but said it was a hemangioma.  To be safe, he said they would do a splenectomy.  My insurance company said I would be getting three organs removed for the price of one.  I had always considered myself a healthy guy.  I liked to hike, I liked to be outdoors, I ran some ten-mile races.  I wondered how could this be?  I was really surprised, but then I started the chemotherapy thing, the gemcitabine and cisplatin, going in once a week.  It really attacked me.  Incredibly, I did not lose my hair, and I didn’t have a lot of the other side effects people talk about.  I was definitely worn out. Luckily, my job was very understanding about this.  I worked from home most of the time when I could.  It was tough and taxing.  I was tired. 

BM: We’re confident you will be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the bell icon.  That way you will be notified when we release another cancer interview.  We also want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a license health care professional.

So, John, you had your bladder removed, your prostate removed and your spleen removed.  That is a tremendous amount on your plate, likely enough for two plates, but all of those surgical procedures, three of them, what was the toughest part?

JM: The chemo was tough as it went on for weeks. The recovery from the surgery was tough because they split me like a deer.  All my abdominal muscles, my core muscles, the thought of doing a situp was just out of the question.  Then there’s the mental stuff when you get a cystectomy, and the emotional aspect, I was wondering if I would have the anatomy of a Ken doll.  You start thinking crazy stuff.  I was wondering how I was going to urinate, that kind of stuff.  Prior to scheduling my surgery, they said I had three options because once you have your bladder removed, you have to think of how you are going to evacuate your urine.  You can have an Indiana pouch, a neobladder or nalil conduit, which is basically a bag that you wear, where your urine drains into a bag and you drain the bag when you need to.  I looked at all the options and they gave me a spreadsheet with names of all the guys who had gone through the surgery and next to their names was the option they chose.  I talked to a bunch of them and I ended up going with the alil conduit, the pouch.

BM: And how difficult is urinary function with the pouch?

JM: You know, it took a little getting used to, but it is pretty basic.  I just wear a bag that is attached to the right of my navel.  It took some getting used to, but nowadays, I don’t think much of it.  It has changed the way I wear clothes a little bit, I don’t tuck my shirts in anymore.  I always try to look at this in a positive way.  I joke with people.  When we go on long road trips in the car and tell people they don’t need to pull over for me. I tell them I’m good, that I have a night bag that like a two-liter bag, I can go all night.  I never have to get up in the middle of the night to pee.

BM: With all that you went through, when did you notice things changing for the better, post-surgery?

JM: I was in the hospital for seven days, then came home.  My wife set me up so I wouldn’t have to keep going up and down the stairs.  She set up a room down in the basement.  I hung out there for a few weeks, really gaining my strength back.  I was very weak after going through such an invasive surgery, but every day I would try to get out and walk a little bit.  Even if it was just walking to the mailbox, walking around in the neighborhood, I could tell I was starting to regain strength.  Walking really helped.  The walking started in the hallways of Johns Hopkins right after surgery.  It was probably one of the best things I could do. 

BM: I am sure along this journey, you have gotten plenty of support from your wife, family and friends, but there is an organization that also provided aid, and that is the Bladder Cancer Advocacy Network, or BCAN.  What has BCAN done for you, and what can it do for others?

JM: BCAN was absolutely instrumental to my recovery.  They have just an amazing amount of resources available for people that are going through bladder cancer.  My doctors at Hopkins are very tuned in to BCAN.  One of the first things they did on my visit, they handed me all kinds of material, all kinds of literature with information on my particular type of cancer and all the available different treatments.  I did a lot of self-educating through the BCAN website.  It is just an amazing amount of resources. 

BM: And what is the web address?

JM: It is https://www.bcan.org.

BM: So, there is BCAN, but you are doing your part individually to help those diagnosed with bladder cancer.  Could you tell us a little bit about that, John?

JM: A lot of people have asked me about my story, so I decided to create a website called https://www.beatingbladdercancer.com, and there I post my story and have some blog posts and a link to my YouTube channel, where I do videos on each step of my journey.

BM: John, we are going to wrap up now, and we will ask you the same question we ask of our survivor guests.  If you encountered someone who had just been diagnosed with bladder cancer or someone who thought they might be diagnosed, you might have a lot of things you would want to say, but if there one point that you would want to make to that individual, what would it be?

JM: I would say to educate yourself.  We fear what we don’t know, and if you can go to resources like https://www.bcan.org, and understand exactly what you are going to be facing.  To be educated and to understand how to manage your care, you need to be very engaged with your doctors and ask them questions, and the best way to ask them questions is to be educated.  There are a lot of great resources out there for you to educate yourself and be able to ask intelligent questions.

BM: Excellent.  That’s a tremendous story, John, and lots of information that can help the person diagnosed with bladder cancer.  John Morley, Haymarket, Virginia, thanks for being with us on Cancer Interviews.

JM: Thanks for this opportunity, Bruce.

BM: And we will say what we always say when we conclude.  If you or a loved one are on a cancer journey, you are not alone.  There are people out there like John Morley, organizations like the Bladder Cancer Advocacy Network that can be of help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

Bladder Cancer Advocacy Network: https://www.bcan.org

John’s website: https://www.beatingbladdercancer.com

SHOW NOTES

TITLE: John Morley – Bladder Cancer Survivor – Haymarket, Virginia, USA

What John Morley originally thought was a urinary tract infection turned out to be a diagnosis of bladder cancer.  At first, he was told it was a mild form of the disease.  Then the diagnosis was upgraded to T2 Muscle Invasive Bladder Cancer, requiring a radical cystectomy meaning he would need to get his bladder removed.  His care team next told John he would also have to get his prostate taken out.  Next a mass was detected on his spleen, which meant that it, too, would have to be removed.  Treatment and recovery were tough, but he now urinates into a bag known as an ileal conduit, has become acclimated to it and leads a healthy lifestyle.

Additional Resources:

Support Group: The Bladder Cancer Advocacy Network: https://www.bcan.org

John’s Website: https://www.beatbladdercancer.com

Time Stamps:

01:55 John noticed blood in his urine.

02:53 His primary care physician referred him to a urologist, who sought a cystoscopy.

06:53 He received his diagnosis, but the urologist said it was seen as non-muscle invasive.

08:35 A second opinion also concluded the bladder cancer was non-muscle invasive.

10:36 His prognosis was upgraded to muscle-invasive, requiring his bladder be removed with a radical cystectomy.

12:32 The urologist then said John’s prostate would have to come out.

13:50 A mass was detected in his spleen, requiring its removal with a splenectomy.

20:13 John describes urinary function with an ileal conduit.

22:10 Walking helped him regain strength.

KEYWORDS (tags):

cystoscopy

radical cystectomy

cisplatin

t2 muscle invasive bladder cancer

bcg therapy

hemangioma

splenectomy

prostatectomy

gemcitabine

indiana pouch

neobladder

ileal conduit