Bob Schreiber survived bladder cancer | Cystoscopy | BCG | Ileal Conduit | Replacement Bladder | Neobladder
- Feb 27
- 13 min read
DESCRIPTION
Blood detected in Bob Schreiber’s urine led to a diagnosis of Stage IV bladder cancer. This came after a cystoscopy, in which a tube is inserted into his urethra, taking a picture of the bladder. Twice without success, Bob hoped BCG treatment would address the cancer by instilling a set of chemicals inside the bladder to strengthen the immune system. As a result, he had to get his bladder removed. It was replaced with a neobladder, which was made from his small intestine. His recovery took close to a year, he has to deal with incontinence at night, but would his overall health is about 80 percent of what it was pre-diagnosis.
In 2015, Bob’s cancer journey began when a lab tech detected microscopic drops of blood in his urine. This got the attention of a urologist, who immediately suspected cancer and called for a cystoscopy of Bob’s bladder. The doctor wanted to make sure there was cancer and that if there was cancer, to make sure it had not spread beyond the muscle of Bob’s bladder. Thankfully, the cancer had not spread, but the photos from the cystoscopy confirmed Bob Schreiber had Stage IV bladder cancer.
Bob was told in terms of treatment, the gold standard is the removal of his bladder, but he learned of a potential remedy called BCG instillation. Under this procedure, chemicals would be instilled into the bladder to strengthen its immune and defeat the cancer. Bob and his wife preferred to go this route, but the operation was unsuccessful.
They switched hospitals and made a case for a second attempt at BCG instillation, claiming kidney damage that occurred on the first attempt may have compromised the first attempt’s effective. A new care team went ahead with the second BCG instillation, but it, too, was unsuccessful. This left Bob with no other option than to have his cancerous bladder removed.
Although he could have chosen treatment that would have left him with a bag to collect his urine, he instead went with a neobladder. That’s a replacement bladder made from his small intestine. The difficult and dangerous took eight hours.
A day after its conclusion, Bob got up and walked around the hospital floor. And he walked and he walked and he walked. By the time he was done, Bob said he had walked about a mile and a half! Hospital staff had done a better job of bouncing back from this particular surgery than any patient they had ever had. Whereas many patients remained hospitalized after this procedure for weeks, Bob went back home just four days after the surgery was done.
Bob Schreiber said recovery was slow, but he made progress. He said then, and now, he is able to remain continent during the day but does have incontinence issues at night and has to make trips to the bathroom every three or four hours.
Bob says his health is approximately 80 percent of what it was prior to his diagnosis, but he is extremely grateful to be able to chase after his small grandchildren.
Additional Resources:
Support Group:
The Bladder cancer Advocacy Network: https://www.bcan.org
TRANSCRIPT
Bruce Morton: This the @CancerInterviews podcast. Welcome. I’m your host, prostate cancer survivor, Bruce Morton. Our guest on this episode survived a multi-layered journey with bladder cancer. He is Bob Schreiber of Newton, Massachusetts, and we are thrilled that he is with us to share his story. Now, let’s get to it, and Bob, welcome to Cancer Interviews.
Robert Schreiber: Okay. Thank you very much, Bruce.
BM: Bob, we want to start out by getting to know a bit about you and your life away from cancer. So, tell us a bit about where you are from, what you have done for work and what you like to do for fun.
RS: I am originally from North Jersey, but relocated to Boston, Mass. for school, became a civil engineer based on water resources and the environment. So, my professional life has been to clean up the environment and provide clean, safe water to people all around the globe. We have a wonderful family in this area, and we babysit every Tuesday.
BM: For each of us on a cancer journey, there was that time when our health seemed normal, until it wasn’t. In your case, when did you notice something abnormal about your health?
RS: That’s a good question. I have really had any pains or any loss of strength. The first thing I noticed was lab technician seeing microscopic particles of blood in my urine, which is not normal. That is what triggered the start of everything.
BM: Once that took place, did you go through any additional hurdles before you were diagnosed?
RS: No additional hurdles. The diagnosis came fairly quickly, but the urologist who had taken that urine sample told me that she thought it was bladder cancer, but I didn’t understand what she said. It totally went over my head. I guess I didn’t want to hear that. This is in late 2015, early 2016, and my wife and I went on a cruise. It wasn’t until I came back that the doctor said I had to come in and do some exploratory testing. That testing is what really triggered for me, and my wife as my main caregiver, that there was really a serious problem.
BM: Was that serious problem diagnosed as cancer then and there, or was it something else?
RS: Oh, no, it was bladder cancer. The initial testing was to have a cystoscopy by the urologist, which is where a tube is inserted into your urethra. It has a camera on the end and it looks into your prostate and bladder, and she saw where there were patches on the inside of my bladder that looked like cancer, and she said this was definitely cancer. We need to go in and remove as much as we can as well as to take a biopsy and see how serious it is to see if it has invaded into the muscle of the bladder. She took that sample and found out that it had not invaded, so she put me on a regimen of a BCG treatment, which is basically to instill a certain set of chemicals inside of the bladder to try to activate my immune system to get rid of the cancer. That was unsuccessful. So, that was the first step that we went through.
BM: But by this time, you mentioned that cancer was part of your life. You had mentioned that your wife was your caregiver, so this battle was being waged on two fronts. We already know that news is life-changing, but diagnoses are different and people are different, so between you and your wife, how did you handle this news?
RS: I am an eternal optimist. I dealt with it by being optimistic and saying that we are going to conquer this, and I have maintained that optimism. It certainly came as a shock to my wife, but she has been very supportive all along the way. The one thing that we learned, even from the start, is that it really helps to speak out, to make sure that somebody is taking notes, and she was taking notes during all my appointments and so on, and so we have had two people to ask questions and make sure we understood what was happening. That was very important to reach out and get as much information as possible, and to talk to other patients, as well as to get second opinions in certain cases and that has been very helpful. Not everybody has that kind of luxury.
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 we are not distributors of medical advice. If you or a loved one seek medical advice, please contact a licensed health care professional.
Bob, correct me if I am wrong, it sounded once you got your diagnosis, there was only one treatment path for you, or am I wrong, and you actually had multiple treatment options.
RS: There was more than one treatment option. One of the things that I look back on is that I was probably being way too risky. The initial diagnosis told me the best way to deal with this because it is an aggressive form of bladder cancer, is to have your bladder and prostate taken out and then replace the bladder with a replacement bladder made out of your intestine or have what it called an ileal conduit, with a bag on the side for the urine to be collected. The first round of BCG treatment didn’t work, as I mentioned, so we were told that the gold standard is to have your bladder out, so that you are not risking having it metastasize and go throughout the rest of your body. We agreed that with the first BCG treatment, I had had a bad kidney infection, so we thought the antibiotics from that as well as the infection itself may have interrupted the effectiveness of the BCG treatment, so we actually switched institutions and went to Mass General. We understand that the gold standard is taking out the bladder, but we would like to try BCG one more time. We think the first treatment may have been compromised. So, we tried it one more time as at Mass General and it didn’t work the second time. It was initially giving a good, but we had to go with the gold standard, which was bladder removal.
BM: As you look back on that procedure, what was its toughest part?
RS: Oh, by far the toughest part was the anticipation of the procedure, just worried about how hard this is going to be, the surgery itself, alone, was eight hours. It is very dangerous and a very long surgery. Then there was the recovery. Recovery from the surgery was what worried us the most and what was going to happen after the surgery. I had a neobladder installed, which is basically a piece of my small intestine was used to form what is called a neobladder, a fake replacement bladder. In the hospital, they got me up walking after the first day. I walked and walked and walked around that floor of the hospital, and I walked about a mile and a half. They said I was the most effective patient they had had, at walking after the procedure and it got me out of there in four days, whereas with some, it takes weeks. I walked at home as well, and that got me on the road to recovery. Within two months, my wife and son and I went to Oregon to see the solar eclipse. That was in August of 2017. The surgery was in May. So, within three months, I was up and traveling all around the Northwest, a real testament to getting up, walking around as much as you can to get back up on your feet as soon as you can. That said, it took me nearly a year to come back and feel like I had the strength before I had the surgery.
BM: Let’s talk about that year. During that time, did you notice progress coming in small increments?
RS: Yes. Every step of the way, when there has been major change in my prostate cancer journey, progress comes when you reach a plateau. When you get there, you don’t have much progress and then you do. As a result, physical therapy has been a big part of recovery. With me having a neobladder and then incontinence, physical therapy was a big part of regaining continence during the day. With a neobladder, you are still somewhat incontinent at night, but the physical therapy helped with that during the day. I went from 175 down to 142 pounds after the surgery, so another very important part was to visit with a nutritionist. It turned out that I had to have 3500 calories per day, given my metabolism, so it took me about a year and a half to get up to that weight.
BM: Pardon my stating the obvious, but when one thinks of bladder cancer, one thinks of urinary function. You had mentioned bouts of incontinence in this immediate post-treatment era, if you will, but in terms of the here and now, what is urinary function like for you now, these days?
RS: It’s very good during the day, but at night it is still a problem. That is really common among neobladder patients. Some neobladder patients are totally incontinent both day and night, while others are totally continent during the day and night. For me, at night, I have to wake up every three or four hours to urinate. Sometimes I spill over the pads that I wear, but again, the alternative was worse. Now, if I had selected an ileal conduit, with a bag on the side, I would have been able to sleep all through the night because you can have a nighttime bag that will collect all of the urine over an eight-to-ten hour period. That was one of the plusses of going that way, but I still wanted to retain the way I looked as much as possible. That was one of my criteria.
BM: Now, let’s talk about matters pertaining to your health that have nothing to do with urinary function. If your overall health, pre-diagnosis could be labeled 100 percent. These days, head to toe, how close are you to 100 percent?
RS: I’d say I am about 80 percent. Part of my journey was that I did have metastases that required chemotherapy, some radiation as well as immunotherapy. This caused neuropathy in my feet and a little bit in my hands. That is a problem. I cannot run, but my goal with the physical therapy is to able to chase after grandchildren again, and that’s really the 20 percent is that to an extent I cannot do walking and running the way that I used to.
BM: In addition to the support from you wife, an external source for you has been the Maryland-based Bladder Cancer Advocacy Network. Could you share with us a bit about what it has done for you and what it can do for others.
RS: BCAN has been absolutely wonderful for us. It turns out that our nextdoor neighbor grew up with the co-founder of BCAN. That co-founder, I was able to call her on the phone, with the help of the neighbor, and the co-founder was able to spend about two hours on the phone with me over the next two months. That was the start of our involvement with BCAN. Since then, my wife and I have become very involved in it. BCAN offers a wide variety of resources and one of the resources is that you can call up BCAN or send an email to them and ask for a patient that has already gone through what you are about to go through, to talk with you on the phone. Both my wife and I volunteer for that program. It’s called Survivor to Survivor. I have spoken to a number of patients as they are starting their journey or midway through their journey. I have also used that program when my journey had unforeseen problems that I had to take care of, like the metastases I had. Back in 2024, I came down with bladder cancer in my urethra and BCAN set me up to talk with two patients that have had urethral bladder cancer, a very rare form of bladder cancer. There have so many ways in which BCAN has helped us out. One of the main things we do also is to help out and to organize the annual walk to raise funds for BCAN, and then BCAN takes the proceeds from the run and from various sponsoring companies to fund research and development to cure bladder cancer.
BM: The BCAN website has quantitatively and qualitatively just a tremendous array of information for anybody who needs to know something, anything about bladder cancer, and one can get to that website by going to https://www.bcan.org.
RS: Right. BCAN had podcasts just like this one, it has recorded seminars, it has patient summits, where patients can hear the latest and greatest about bladder cancer to talk with each other. BCAN does so much.
BM: Bob, we are going to wrap up and we will conclude with the following, If you had a private audience with someone just diagnosed with bladder cancer or someone who thinks they might be so diagnosed, this person might have a lot of questions and you might have a lot of answers; but if from this conversation, there was one pearl of wisdom you would to make sure this person didn’t forget what would it be?
RS: It would be to reach out and get information. Talk to people, talk to the people who have suffered with bladder cancer, talk to the experts that you have access to, go to the BCAN website at https://www.bcan.org, as you mentioned, and expect that your bladder cancer will go through different stages and realize that bladder cancer can be very aggressive and you need to monitor it. You need to keep monitoring your body. Have your medical staff monitor your body to make sure you are keeping track of your successes and realize that you have to do that for the rest of your life.
BM: Wonderful. Bob, thank you very much for a wealth of information, not only from you, but from the Bladder Cancer Advocacy Network, which as we have mentioned can be a source of assistance in whole variety of ways. So, Bob, thanks very much for being with us on Cancer Interviews.
RS: Thank you, Bruce. We bladder cancer patients appreciate what you are doing. Thank you.
BM: And we want to remind you as we conclude, as we always do, that you or a loved one are on a cancer journey, you are not alone. There are people like Bob Schreiber, there are organizations like the Bladder Cancer Advocacy Network, that are there to help. So, until next time, we’ll see you on down the road.
Additional Resources:
The Bladder Cancer Advocacy Network: https://www.bcan.org
SHOW NOTES
TITLE: Bob Schreiber, Stage IV Bladder Cancer Survivor – Newton, Massachusetts, USA
Blood detected in Bob Schreiber’s urine led to a diagnosis of Stage IV bladder cancer. This came after a cystoscopy, in which a tube is inserted into his urethra, taking a picture of the bladder. Twice without success, Bob hoped BCG treatment would address the cancer by instilling a set of chemicals inside the bladder to activate the immune system. As a result, he had to get his bladder removed. It was replaced with a neobladder, which was made from his small intestine. His recovery took close to a year, he has to deal with incontinence at night, but would his overall health is about 80 percent of what it was pre-diagnosis.
Additional Resources:
Support Group:
The Bladder Cancer Advocacy Network: https://www.bcan.org
Time Stamps:
01:49 Bob says a lab tech discovered blood in his urine.
03:15 Additional tests revealed bladder cancer.
05:09 His reaction to the diagnosis.
09:26 Bob said he had multiple treatment options, but settled on bladder removal.
11:10 Describes the toughest part of his treatment.
13:25 Said in the year after surgery, his recovery improved little by little.
15:44 Assesses his urinary function.
17:02 Bob is asked how close his health is to what it was, pre-diagnosis.
24:14 His advice to those diagnosed with bladder cancer.
bladder cancer
cystoscopy
urethral bladder cancer
BCG
replacement bladder
ileal conduit
bob schreiber
neobladder
neuropathy
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