Margo Wickersham survived bladder cancer | cystoscopy | radical cystectomy | plasmacytoid | stoma

DESCRIPTION

In November 2019, Margo Wickersham noticed blood in her urine.  Three months later, she was diagnosed with two types of bladder cancer.  After an aggressive chemotherapy regimen, she underwent a radical cystectomy and a hysterectomy in June 2020, resulting in the removal of her bladder, uterus and cervix, all this during the quarantine phase of the COVID pandemic.   Ever since, Margo has been cancer-free, but she had to get fitted with a stoma bag and had to learn how to manage it.  The bag is an annoyance, but she considers it a small price to pay in order to stay alive.

When Margo first noticed blood in her urine, she sought medical attention, thinking she had a urinary tract infection.  It turned out she didn’t have a UTI, but she still thought something was wrong.  She underwent a cystoscopy, which captured a photo of a cauliflower-shaped tumor in her bladder.  Next up was a biopsy, which indicated she had Stage One bladder cancer.  Her urologist prescribed BCG immunotherapy.

Margo sought a second opinion and her doctor ruled out BCG, because further probing turned up a second type of bladder cancer, plasmacytoid, and said it could not be addressed with BCG.  He called for an aggressive chemotherapy regimen.  He also said in addition to a radical cystectomy, which would remove Margo’s bladder, he said a hysterectomy would be necessary, a procedure that would remove her uterus and ovaries.

Both were performed in June 2020.  Because that was during the quarantine phase of the COVID pandemic, neither Margo’s husband nor members of her family could visit her.

After the procedures, Margo was cancer-free.  However, her life would never be the same after she had to wear a stoma bag into which her urine would go.  Sometimes the bag leaks when filled beyond its capacity.  She accepts this as her new normal and says she can deal with it, but has to think ahead in terms of access to a bathroom.

By way of advice, Margo says one’s primary emotion should be that of hope and not stress.

Additional Resources:

Support Group:

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

Margo’s Book, available on Amazon and Kindle:  Gratitude in the Storm – When Not Dying Is Enough to Keep Fighting

Margo’s merchandise line: www.ThriverSurvivor.shop, with a portion of the revenue going to the Bladder Cancer Advocacy Network, to fund bladder cancer research

TRANSCRIPT

Margo Wickersham

Bruce Morton: This is the Cancer Interviews podcast, and I’m your host, Bruce Morton.  Men get bladder cancer, but, so, too, do women.  Our guest on this episode survived bladder cancer and has gone on to shine a light on the notion that early detection can help one get in front of the disease, be they male or female.  She is Margo Wickersham of Austin, Texas, and the story of her past, present and future should be a source of inspiration for anyone on a cancer journey.  Here she is, and Margo, welcome to Cancer Interviews.

Margo Wickersham: Thank you so much for having me.  I am delighted to be here.

BM: Margo, it is our custom to start out by learning more about our guests and their life outside of cancer.  So, if you would, tell us about where you are from, what you have done for work and what you like to do for fun.

MW: I am originally from Jacksonville, Florida and I have been in Austin, Texas for about 25 years.  My husband and I enjoy walking with our dogs and traveling around. We love the beach.  I have two kids who are growing up and seeking more education.

BM: For all of us diagnosed with cancer, there was that time when something with our health appeared abnormal.  For you, when were those symptoms and what were those symptoms?

MW: It is a good question because it is a journey and there is not just one moment and there is not just one thing where the journey begins, but for me, there is.  I woke up one morning in November 2019 and found a little blood in my urine.  It didn’t come back that day or that week, but I knew something was wrong.  I saw a doctor hoping it was a urinary tract infection.  A test revealed it was not a UTI.  Then I called my doctor, my OBGYN.  A lot of women use an OB as their general practitioner.  One of nurses told me I should just keep an eye on it, but my gut told me otherwise. They made an appointment with a urologist that day, and off I went.  Advocating for myself had a really big influence on my trajectory because I kept staying on top of it and I didn’t dismiss what my guy was saying. 

BM: Against that backdrop, what ultimately led to your diagnosis?

MW: I trusted him, but I also knew that second opinions were really key.  So, I got an MRI and a cystoscopy, that’s where they take a picture that they slip inside you and they look around and they saw what looked like a little piece of cauliflower.  From there, the conclusion that now we needed to get a biopsy of that.  It’s a separate procedure.  They knock you out for that.  They call it a transurethral resection.  They cut out the tumor and the surrounding tissue and take it away for a biopsy.  The results came back on January 16, 2020, and indicated that I had Stage I urethral carcinoma, or, bladder cancer.

BM: Each of us with a cancer diagnosis is different as is our diagnosis.  Given these variables, how did you handle this horrific news?

MW: The way I handle tough times is to compartmentalize.  I put the stressful stuff in what is like a Tupperware container and put it on a shelf for when I need it.  So, I focused on how to take care of me with whatever was coming next.  The first part of that was getting a second opinion, which is something I want to share.  We have this tendency to accept whatever the doctor says because we don’t want to hurt his or her feelings, but our own health is at stake, so concern about their feelings shouldn’t take priority over the doctor’s feelings.  I pushed through that discomfort and went to MD Anderson for a second opinion.  In that meeting, Dr. Ashish Kamat said they wouldn’t treat me with BCG immunotherapy.  It is the procedure most commonly used for non-muscle invasive bladder cancer, if it is at Stage I.  That was what the protocol would have been had I stuck with the doctor in Austin.  Dr. Kamat said BCG wasn’t an option because I had a second variant, two kinds of cancer in my bladder.  I had no idea one could have two kinds of cancer in the same organ.  The second cancer exists in one percent of those diagnosed with bladder cancer, called plasmacytoid.  He said plasmacytoid would be addressed by BCG, and that he needed to throw the kitchen sink at my diagnosis, and maybe they can save my life.

BM: And the kitchen sink consisted of what?

MW: It consisted of four kinds of bladder cancer chemotherapy.  That was going to be three nights and four days in the hospital every other week for eight weeks.  It was really intense and I felt progressively worse with each day as one does with such a regimen, followed by a six-week break to let my body recover from that and then a radical cystectomy.  That’s when they remove your bladder, then they tack on a hysterectomy as well, so they remove your uterus, your ovaries, your lymph nodes, and you might be thinking, “What’s left to handle liquid waste?”  They do this magical surgery where they take this piece of your small intestine and they create a stoma.  They cut a hole in your belly, they stick this little thing in and they connect the nerves that used to connect to your bladder, and the urine exits through the stoma and into a plastic bag.  If you haven’t heard of that before, that’s pretty scary, but it is going to become your new reality.  What I want to say in the same exact paragraph is becomes the new normal and is not that big of a deal, but it is a huge mountain to climb, emotionally, to get to that new normal.

BM: By the way, we hope you will find time to like and subscribe to our channel.  If you hit the bell icon, you will be notified the next time we post an interview.  We also want to remind you that on Cancer Interviews, we are not a source of medical advice.  If you seek medical advice, please contact a licensed healthcare professional.

So, Margo, the first thing I want to ask you is, what was it like to go through the radical cystectomy and hysterectomy?

MW: It’s frightening and it was especially lonely and difficult for me because it was during the quarantine phase of COVID.  This was in the Spring of 2020, and so no one could set foot in the hospital with me at all for any of this.  I was fortunate that I had access to MD Anderson, an elite cancer hospital.  I found them to be excellent on every point that you could possibly observe, but even they can’t make up for the face that nobody could visit me.  That part was really tough.  I felt like a prisoner for a few moments through the various stations.  The staff is really capable, but you know no one.  It was beyond frightening.  I couldn’t wait to be put to sleep because I didn’t want to be awake anymore, worrying about it. 

BM: It sounds like you transitioned relatively easily from being whole to suddenly having a body without a bladder, uterus and ovaries, but managing a stoma bad is not easy.  For you, how tough was it to manage a stoma bag?

MW: Extremely.  I was in tears a lot of the time.  I can only speak for myself.  I felt particularly altered and less attractive because now I had a disfigured body.  I knew rationally, that was not the way to approach this, but I also knew that if I didn’t acknowledge the feelings and the fear, that I was never going to process this.  I don’t like being sad and mad, and who does?  But I have a loving, supportive husband and family, and that made things a lot better.  To this day, when I need changing, sometimes the bag will leak before its time, it just happens sometimes, it is really annoying, and he is always there to offer help if I need it.  For the first few times, I did benefit from an extra set of hands.  I didn’t feel pretty, I was just completely raw and honest.  Everybody is going to have a different experience.  I didn’t want him to see me like that.  I had a lot of turmoil and emotions as I got used to it.  Now, it’s no big deal.  Now I have an invisible sunflower disabilities lanyard that I wear at the airports, and I don’t have to wait in line as long. 

BM: You mentioned a public setting, going to an airport, but as a real estate agent, you are often in a public setting with clients.  In that setting, how difficult is the stoma bag?

MW: That’s a great question.  The stoma bag doesn’t hold as much as a bladder.  It is expandable to a set amount.  I drink a lot of water, which is a good and healthy thing, but it means I have to keep an eye on where the toilet, so I can go and empty the bag from time to time.  It requires planning ahead more than I used to, but it’s not terrible.  It is a hassle, but it is the price of being alive.  Totally worth it.

BM: Margo, you have projected this very positive vibe in terms of how you deal with your diagnosis and with the stoma bag.  If you would, relive for us your getting the news that you wer cancer-free.

MW: This is the most amazing news you can get after months of chemo and surgery.  It is hard during the six weeks after your surgery to find out if the procedure was a success.  You hope that probably it did, and just hope for the best.  My advice is not stress about what could be, because you never know.  If you stress about it, you will stress about it later, and you have stressed about it more than you have needed to.  If the outcome is good, then you haven’t wasted time or brain cells on stressing.  I did my best to hold that line.  Sitting in the office at MD Anderson, waiting for the doctor to come in and learn the results of my procedures was crazy.  My husband was down in the parking garage in the car.  I had the phone on and we were talking while we were waiting for the doctor to come in, so it was a bit like sitting on pins and needles.

BM: Now, Margo, I want to address an area that is right in your wheelhouse.  If you would, share with us the importance of emphasizing that bladder cancer can be suffered by women as well as men.

MW: Bladder cancer is one of the sixth- or seventh-most diagnosed cancers in the world, depending upon whose research you are looking at, and yet it is one that no one talks about.  We could have a discussion on why that is, but the fact of the matter is, it is the silent kind of cancer.  It is mostly in men.  The average demographic of a bladder cancer patient is 77, they were male and they were a smoker.  I wasn’t any of those things, but 20 percent of bladder cancer patients are women.  We don’t understand why we are getting bladder cancer.  This is a bad news cycle for cancer, but what we want to do is shine a light on cancer, which loves time.  One shouldn’t give cancer time.  One of the things I want people to know is that my cancer is one of the more treatable, if caught early.  The most common symptom to look for is blood in the urine, and for women, they are often under-diagnosed and/or misdiagnosed.  This means that on average that a woman is not correctly diagnosed for another six to eight months.  That allows the cancer to grow further.  So, the big, bad headline is more women die of bladder cancer than men, 30 percent.  I hope we can at least get this down to zero, and reduce the number of women who don’t need to die while we are also raising awareness and building more funds for research so that we can find a cure for cancer altogether.  That is my mission.

BM: Speaking of awareness and the funding for the necessary research, there is an organization that has aided your journey.  It is the Bladder Cancer Advocacy Network, or BCAN.  If you would, tell us a bit about what it has done for you and what it can do for others.

MW: Yes, the Bladder Cancer Advocacy Network was especially useful for me during the quarantine because there weren’t support groups.  Any of the other infrastructure that was around was shut down.  So, I really depended on BCAN, and its resources that were available to me, in particular, connecting patient to patient.  They connected me with another woman who had the kind of cancer that I had.  There are so few people who survive plasmacytoid that is very hard to find someone who has it.  That helped me deal with all the anxiety and the emotions that come with facing a life-threatening illness and really challenging, life-changing treatments and surgeries.  It was very, very helpful to have those resources.  BCAN has done so much and has helped so many people.  Their web address is https://www.bcan.org, if you want to learn more.

BM: Margo, we are going to wrap up, and we are going to conclude the way we usually do, with this question.  If you had a private audience with a woman who has just been diagnosed with bladder cancer, you would likely have much to share with her, but if there was one thing you wanted to make sure this woman remember at the end of your conversation, what would it be?

MW: It would be hope that you will adjust to your new normal, because as hard as it feels in the beginning or in the middle, that isn’t where we stay, but we forget that in the moment, so hope that there is a new normal and it will be no big deal.  There is a new normal, and it’s okay.

BM: Margo Wickersham, Austin, Texas, thank you for a wealth of information for anybody who has been diagnosed with bladder cancer or think they might, there is plenty they can learn from what you have had to say, so, Margo, thanks very much for being with us on Cancer Interviews.

MW: It is my pleasure.  Thanks for having me.

BM: And we want to remind you as we bring this episode to a close, that if you or a loved one have been diagnosed with cancer, you are not alone.  There are people out there like Margo Wickersham and organizations like the Bladder Cancer Advocacy Network at https://www.bcan.org, that are there to 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

Margo’s Book, available on Amazon and Kindle:

Gratitude In The Storm – When Not Dying is Enough to Keep Fighting

Margo’s Bladder Cancer Merchandise Line:

ThriverSurvivor, with a percentage of revenue donated to BCAN, www.ThriverSurvivor.shop

SHOW NOTES

Margo Wickersham, Bladder Cancer Survivor – Austin, Texas, USA

In November 2019, Margo Wickersham noticed blood in her urine.  Three months later, she was diagnosed with two types of bladder cancer.  After an aggressive chemotherapy regimen, she underwent a radical cystectomy and a hysterectomy in June 2020, resulting in the removal of her bladder, uterus and cervix, all this during the quarantine phase of the COVID pandemic.   Ever since, Margo has been cancer-free, but she had to get fitted with a stoma bag and had to learn how to manage it.  The bag is an annoyance, but she considers it a small price to pay in order to stay alive.

Additional Resources:

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

Margo’s Book, available on Amazon and Kindle: Gratitude in the Storm – When Not Dying Is Enough to Keep Fighting

Margo’s Merchandise Line: www.ThriverSurvivor.shop, with a portion of the revenue donated to the Bladder Cancer Advocacy Network for bladder cancer research

Time Stamps:

01:44 Margo noticed blood in her urine in November 2019.

03:21 What led to her diagnosis.

04:34 Reaction to her diagnosis.

06:49 Describes the treatment regimen that preceded her radical cystectomy.

09:04 Recalls what it was like undergoing a hysterectomy and a radical cystectomy.

11:11 Margo explains how she dealt with her urine going into a stoma bag.

13:10 Dealing with the stoma bag when in a public setting.

14:42 Said it was great learning she was cancer-free.

23:37 Margo has this advice for others diagnosed with bladder cancer.

KEYWORDS (tags):

cystoscopy

bladder cancer

bcg immunotherapy

plasmacytoid

stoma bag

radical cystectomy

urinary tract infection

margo wickersham

transurethral resection