Michelle Reed survived bladder cancer | cystoscopy | gemcitabine | bcg immunotherapy | mitomychin
- 7 hours ago
- 12 min read
DESCRIPTION
Michelle Reed is still with us after being diagnosed with NMI bladder cancer in 2018; but she will stop short of saying she has survived the disease. Since surgery to remove a 7mm mass, she has had ten recurrences. Post-treatment included a chemotherapy regimen of gemcitabine, which she says she will be taking for the rest of her life. Managing her cancer consists of making she comes in for her scheduled scans and listening to her body. Michelle does much to help others as they battle cancer through her book and her website.
In 2018, Michelle Reed had a lot on her plate. Her son had just been in an auto accident and while she was caring for him and working at a full time job, she noticed blood in her urine. With all she had going on, she was slow to seek medical attention, but when the condition wouldn’t go away, she went to an urgent care. She made five such visits, each time being told she probably just had a urinary tract infection or mini kidney stones. Michelle had friends who had suffered kidney stones, knew they were quite painful, and that tipped her off, that the diagnoses she had received at the urgent care were inaccurate.
She eventually saw a urologist who conducted a FISH test, which stands Fluorescence In Situ Hybridization urinalysis, which combined with a CT scan, revealed a 7mm mass on her bladder. Her doctor said it was urgent that Michelle undergo surgery to remove the mass. He added that a best-case scenario was complete removal of the mass after which she could go home, while a worst-case scenario would her being hooked up to a bag for the rest of her life. Thankfully, the entire mass was removed.
However, Michelle Reed will never say she has ‘survived’ bladder cancer. After the surgery, she was put on a chemotherapy regimen of gemcitabine. She says she will always be on that regimen. Michelle also says since her diagnosis, she has had no less than ten recurrences of bladder cancer, requiring several surgeries. She also knows there is the possibility that another surgical procedure could be in her future.
Michelle says the quality of her urinary function varies from day to day, and that also will be with her for the rest of her life, as well as fatigue that is a byproduct of her treatment.
By way of advice to others who find themselves ‘managing’ their cancer, she says to be sure to be present for all your scheduled appointments and listen to your body.
Michelle Reed makes a steadfast effort to help others battling cancer with a book anda website.
Additional Resources:
Michelle’s Book: Cancer Care Book
Michelle’s Website: https://www.cancersupportstudio.com
TRANSCRIPT
Michelle Reed
Bruce Morton: Greetings. This is the Cancer Interviews podcast, and I am your host, prostate cancer survivor, Bruce Morton. Our guest on this episode finds herself in a position shared by lots of people. Michelle Reed of Atlanta, Georgia has been treated for NMI bladder cancer but stops short of saying she has survived the disease. Michelle manages her cancer and does her part in the fight against cancer as an advocate and an author. Now it is time to hear her story, and Michelle, welcome to Cancer Interviews.
Michelle Reed: Thank you, Bruce. Thank you for inviting me to be on your podcast.
BM: It is our custom to start by learning more about our guests before we dive into their cancer journey. So, if you would, tell us a bit about where you are from, what you have done for work, and if there is time left over for fun, what you like to do for fun.
MR: Well, I am originally from Michigan, south of Detroit. That ties in with my story. I moved to Atlanta in 2019. What I do for work is I work remotely from home for a construction company. It works with my schedule, so I appreciate that. I have been working with them for quite some time. For fun, I like to travel. I love to go to concerts, to live shows. I have some nieces and nephews, and they pretty much fill the gap of not being busy.
BM: Michelle, for all of us diagnosed with cancer, there was that point in time when we thought our health was just fine, until we noticed something abnormal, and that led to a diagnosis of cancer. In your case, when did you notice something wasn’t quite right?
MR: I forgot to mention I am also a mother. When I started noticing I had some issues, I was under a tremendous amount of stress in my life. My son had just been in an auto accident,t and he was pretty disabled from it. Working as a single mother and working full time, I was so stressed out. I began experiencing blood in my urine and it pretty much was ignored. I had so many things going on in my life. I thought it was just a normal urinary tract infection. I had a hysterectomy several years prior to this, so my initial thought was that this wasn’t normal and that I shouldn’t have blood in my urine when I go to the bathroom. So, I went to some urgent cares. They passed it off as a UTI. After a few times, they said it was probably micro kidney stones. I had plenty of friends that had regular kidney stones, so I knew how painful that was, and I did not have any pain. It just kind of a red flag for me that something wasn’t right. So, after the fourth or fifth time of going to urgent care, my company offered me an opportunity to go to telehealth. This was right when telehealth was becoming a thing. I thought they were just going to give me antibiotics. It was the telehealth doctor that started asking me a lot of very intrusive questions. She did not allude to this possibly being bladder cancer, but she did say I needed to see urologist and specifically tell them that I had painless bleeding. I did that, and the rest is history.
BM: So, after you followed up on that suggestion, Michelle, what ultimately resulted in your diagnosis?
MR: This urologist also suggested that it could be kidney stones, so that time, I had no thoughts other than that. He ran a test, which is called a FISH test. That stands for Fluorescence In Situ Hybridization urinalysis. They put dye in it and that makes the cancer cells light up. That came back positive for Urethral Papillary Carcinoma, or, bladder cancer. One of the other tests he ran a CT scan, and that came back with a 7mm mass in my bladder. I did some other tests, but they all came back normal. How did I find out about my diagnosis? I find out not from a healthcare professional, but from my chart. On Friday the 13th in 2018, I received a notification and it said, “Test Results.” I read them and it said, "Urethral Papillary Carcinoma positive.” I had no idea what that was, so of course, I Googled it and found out that is what it was. It was 4:30 on a Friday. Doctors offices were closed, so I had to go all weekend, freaking out, wondering what was happening. Even when Monday came around, I called and they still couldn’t tell me over the phone. They said the soonest they could get me in was Thursday of that week, so I had to wait almost a full week just to sit down with the doctor, who confirmed that I had this bladder cancer. At the time, he had no idea what stage or anything. He said the next step would be to go in with a cystoscopy, which is where they go in with a flexible catheter with a camera, go inside your bladder and take a look around. He said based on the size of the mass found by the CT scan, he said he would rather bypass the cystoscopy and go right into surgery. He was quite urgent about it. I said I wanted to get this addressed, so that’s what we did. My first surgery was scheduled ten days later. The doctor comes in and talks to you before you go to the OR. I asked him what would happen. He said the best-case scenario is you wake up, we removed the entire mass and you get to go home. The worst-case scenario is wake up and you have a bladder bag. He didn’t explain anything other than that, so that is what I knew when I went into the OR. When I woke up after surgery, I had believed in all of my heart that he got it all and he said he did, so I got to go home.
BM: By the way, we hope you will find time to like and subscribe to our channel, and if you click on the bell icon, you will be notified whenever we post an interview. We also want to remind you that on Cancer Interviews, we are not distributors of medical advice. If you seek medical advice, please contact a licensed healthcare professional.
Now, Michelle, I have to ask you, and there is a bit of daylight between your story and those of the over 170 people we have interviewed is the waiting component. You had to wait for your diagnosis and its explanation, then you had to wait for your surgery. I can only imagine that was very difficult, but I want to hear the answer in your words, how tough was all that waiting?
MR: It was incredibly tough and stressful, not only because of what I was dealing with concerning my son, but also because I really didn’t have a lot if support. I had friends and I did tell my son any my very closest friends, but I kept a lot of it to myself because I didn’t know what was going to happen or what I was dealing with. The doctor really did not prepare me at all until after the surgery. I came back a week after that for a followup, so that would afford time for the pathology to come back regarding the tumor. That’s when he pretty much handed me a couple sheets of paper. One was a chart from the National Cancer Institute, I believe. It was a chart and it said for instance, if you have Stage I and it is Low Grade, and it had all these words I didn’t understand, this is the recommended course of treatment. At the time, there were three courses of treatment. There was radical vasectomy, which is removal of the bladder and the other two were two chemos. This was what was available in 2018 and there wasn’t much more one could do. At the time, I didn’t want to lose my bladder. The doctor said I could do nothing, which was a fourth option. He said they could monitor my condition and wait until the cancer gets worse before it gets treated with chemotherapy.
BM: It sounds like the surgery itself was not that taxing on you because you were knocked out, but you would be much alive and awake when you went on a chemotherapy regimen. If you would, describe that regimen and what it entailed.
MR: It wasn’t actually until I moved from Michigan to Georgia and found a new doctor who was a urologist oncologist. He initially wanted to give a scope, which found an even larger mass, necessitating another surgery. After that surgery, he suggested I go on chemo. At the time, there was an immunotherapy treatment, BCG, he said had really good results for my type of cancer. I looked into it, but he came back and said after checking my records I didn’t qualify for BCG because I had been previously exposed to tuberculosis. It was in my chart that I was exposed in my younger years, I was treated for it and the TB was inactive. He said if I went the route of BCG, I would have to fight cancer on top of potentially activating tuberculosis, so he recommended against BCG. He did recommend a light type of chemotherapy called gemcitabine and that is pretty much what I have been on, ever since, because at the time, it was just BCG, gemcitabine and mitomycin, which is a much stronger chemotherapy drug. The doctor said he would hold off on the mitomycin, because that is for people with Muscle Invasive bladder cancer and mine was Non-Muscle Invasive bladder cancer.
BM: You mentioned, very thankfully, that you didn’t have to wear a bag, but these days, how would you describe your urinary function?
MR: It actually varies, depending upon the day. I have had ten recurrences since I was originally diagnosed. I have had multiple surgeries, which we call TURBTs, which stands for Transurethral Resection of Bladder Tumor. I have had several of them. As you can imagine, that stretches out every time you inset a catheter or your urethra stretches out. So, depending on the day and how long I hold it, I could have a trickle or it could be free-flowing. It just really depends. Having ten recurrences of this, some of my tumors grew around the base of my urethra and I can tell by now when it is close to the urethra. Sometimes I will have a burning sensation or sting and that is from the flow of the urine coming out might pull apart or tear off the growth, which has happened, and I would have tissue in the toilet. It’s pretty incredible that I would have a cancer growth growing inside of me and then a second later, it is gone and considered NED, or No Evidence of Disease. It really messes with your mind a little bit, actually quite a bit I would say.
BM: I would think so. Now, at the top I trotted out the word managing for how you deal with your cancer journey. I was going to ask you how you describe the management of your cancer, but I think you already have. Is there anything else tied to the management of you cancer that you haven’t mentioned?
MR: It was suggested to me after I moved from Michigan to Georgia that the first doctor never offered any advice or assistance beyond what that sheet of paper said, but my next doctor recommended I stay on top of getting my scopes. I could get them every three months, every six months, once a year. If I get another growth, it is like starting the clock all over again. Managing it involves a lot of self care, a lot of paying attention to your body, recognizing additional symptoms and really working with your doctor and/or your clinic to stay on top of appointments and treatments. Hopefully they will work with you.
BM: Michelle, if you think back to what your health was like before your diagnosis and we call that 100 percent, then compare it to your health in the here and now, and quantify, how close would you say, are you to 100 percent?
MR: Right now, I would suspect I have active cancer growth based on having urinary issues, urgency and that burning, stinging sensation, but I also recognize that a lot of fatigue and feeling like something is wrong. Every time I have a new growth, it kinda takes me back to the time before I was diagnosed and remembering how I felt back then. I was under a lot of stress, so I wasn’t sleeping well, I wasn’t eating healthy, just doing what I could to survive the day. I take a lot better care of myself today, but is really paying attention is what gets me through, so I would say right now, I am probably 80 percent of what I was back then, but of course, once I have the surgery to remove the tumor and if I have to have chemo or any other type of treatment, there is a period of getting through that because that causes a whole list of other side effects. When things are pretty much settled and I have gotten through all that, there is still a lot that is residual for my health. I get a lot of fascia or foggy brain. I am having some neuropathy in my fingers and hands and feet. Then sometimes I experience bladder spasms. Those are no fun. For the most part, it is very manageable as long as it is caught early.
BM: Wow, that is a terrific story, Michelle, so thank you very much for sharing a fantastic story with us. Thank you for being with us on Cancer Interviews.
MR: Thank you, Bruce. I appreciate this opportunity.
BM: And we want to say as we always do when we wrap up, that you or a loved one are on a cancer journey, you are not alone. There are individuals out there like Michelle Reed who can be a source of hope and inspiration, to make that difficult cancer journey a bit easier. So, until next time, we’ll see you on down the road.
Additional Resources:
Michelle’s Book: “Cancer Care Book,” available on Amazon
Michelle’s Website: “Bless Your Vibes Cancer Support Studio” https://wwwcancersupportstudio.com
SHOW NOTES
TITLE: Michelle Reed, Bladder Cancer Warrior – Atlanta, Georgia, USA
Michelle Reed is still with us after being diagnosed with NMI bladder cancer in 2018; but she will stop short of saying she has survived the disease. Since surgery to remove a 7mm mass, she has had ten recurrences. Post-treatment included a chemotherapy regimen of gemcitabine, which she says she will be taking for the rest of her life. Managing her cancer consists of making she comes in for her scheduled scans and listening to her body. Michelle does much to help others as they battle cancer through her book and her website.
Additional Resources:
Michelle’s Book: “Cancer Care Book,” available on Amazon
Michelle’s Website: https://www.cancersupportstudio.com
Time Stamps:
02:44 Michelle said when she discovered blood in her urine, she initially ignored it.
04:42 After multiple visits to an urgent care, she was directed to a urologist.
05:45 A Fluorescence In Situ Hybridization urinalysis resulted in her diagnosis.
07:25 After diagnosis, her doctor urged surgery to remove a 7mm mass on her bladder.
08:23 Doctor shared best- and worst-case scenarios from the surgery.
09:46 Michelle said lengthy waiting time for diagnosis and subsequent surgery was tough.
12:12 Describes her chemotherapy regimen.
14:23 Is asked about her present urinary function.
16:43 How she manages her cancer.
18:12 Michelle compares her current to her health pre-diagnosis.
21:01 Describes her book and website.
KEYWORDS (tags):
stage one non-muscle invasive urothelial carcinoma
fluorescence in situ hybridization urinalysis
transurethral resection of bladder tumor
gemcitabine
bcg immunotherapy
bladder cancer
cystoscopy
urinary tract infection
mitomycin
fascia
neuropathy
painless bleeding
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