I’m a 55 year old woman who was diagnosed with BCG-resistant diffuse carcinoma in situ of the urinary bladder in May of 2003. My cancer was found during a CT scan of my abdomen and pelvis for pancreatitis – I was fortunate that it was caught in the early stage. I had no symptoms other than urinary urgency – no blood and no real discomfort. My urologist told me that although it was cancer, it was the ‘best’ kind of cancer to have as it was typically treatable with BCG. We began BCG treatments every six weeks followed by a cystoscopy at four weeks. I underwent two founds of BCG in addition to BCG with interferon but continued to have carcinoma in situ.
My husband and I were both very surprised when we learned, following my last BCG with Interferon treatment, that I would have to have my bladder removed. We were told at that time that the carcinoma in situ was very aggressive. I had all along thought that were treating the cancer and that we had a handle on it … I realize in hind-sight that I should have been researching my disease more aggressively. However, because I was a-symptomatic it never felt like a big deal (my denial was well intact thoughout the two years of BCG treatment) My urologist initially indicated that there was still inflammation in the bladder and had my pathology reports sent to the Mayo Clinic for review. Also, during this period, I was seen by a urologist at Northwestern Hospital (Chicago) who also indicated that the BCG treatments were appropriate for treating the cancer I had.
Unlike many others, I had virtually no side effects from the BCG and the BCG with Interferon treatments other than some headaches and being tired. The week I began my BCG with Interferon treatment, my husband and I hiked the Appalachian Trail for three days – it was good that we did it early on because by the end of my six weeks I would have been too tired to make the trip.
When my last round of BCG with Interferon was begun in March of 2005, the urologist indicated that if it were unsuccessful that we may be facing surgery. At that point I made an appointment with a urologist at the Mayo Clinic – didn’t know if I’d need to keep the appointment, but decided that I did not want to have to wait for an appointment if I was faced with surgery. It turned out to be a very good move. My local urologist told me that my bladder would have to be removed – I felt like I was hit with a ton of bricks! We discussed options and although he felt I’d be a good candidate for a neobladder, it was not something that he was able to perform. My local urologist told me that he would not be able to see me for a year after my surgery if I went to the Mayo – something that felt very strange at the time. I have since then heard of many urologists who decide not to see their patient if they go elsewhere for their surgery.
My husband and I went up to the Mayo Clinic in June and met with a surgeon who discussed at length the procedure of performing a radical cystectomy and neobladder surgery. For me it meant radical cystectomy, removal of uterus, tubes and ovaries including the cervix and some pelvic lymph nodes. He discussed with my husband and I all of the possible complications including bleeding, transfusion, intestinal content leaks, urine leaks and abstruction. He also talked with us about all of the tubes that I would wake from surgery with – he anticipated the would last 7-8 hours and that my hospital stay would be 5-7 days. We scheduled the surgery for July 12th 2005. Because I also have a history of ulcerative colitis, I had to have a colonoscopy and upper GI to ensure that my intestines were free of Crohn’s disease as the surgeon would be using a length of intestine to create the neobladder.
For me, the neobladder was my first choice over any other sort of urinary diversion. I wanted low maintenance and more importantly I wanted to resume life as normally as possible. I’m a ‘hugging’ sort of person and didn’t want to feel self-conscious with having anything permanent on my abdomen. I discussed my choice with my husband and daughters and had their full support going into this surgery. I was informed by my surgeon that he could not guarantee that I’d wake from surgery with a neobladder – that it was impossible to tell for sure until he could see what was going on inside (e.g. if the cancer had spread to the urethra). But he assured me that my age (55) and physical health made me an excellent candidate for the procedure.
My surgery lasted 8.5 hours … and my husband and daughters were keep informed every hour of my progress by the operating room nurses. When I came out of surgery I was in intensive care for a day and don’t remember a thing about that day. I was told that the cancer was limited to the bladder and left ureter. The next morning I was moved to the surgical floor and I saw my abdomen for the first time. Even though I had been told about the tubes, stents and catheters and IV’s etc, nothing could have prepared me for the reality of seeing all of it there on my abdomen. My incision was larger than I had anticipated and stretched from my pubic bone up to my breast bone. The incision had been ‘glued’ not stitched or stapled and was already beginning to heal. I was told right away that they had been able to do the orthtopic neobladder and remember feeling so very grateful. That day, I was gotten out of bed to begin walking … the first of many walks I’d be doing that week. Walking was quite an experience … it required a complete entourage to surround me … someone with the oxygen, someone walking the IV pole, someone to support me, etc. and I was expected to walk at least four times a day. In the beginning I walked with a ‘podium’ type walker … it was taller than a regular walker and provided support for me to lean on.
I had a morphine pump to help control the pain for the first couple of days, but I mostly used it before I was going to walk. Everything was exhausting to me … I’d walk down the hall and then sleep for an hour. The most frustrating thing I experienced in the hospital was when the stents, tubes, catheters, etc. would get tangled up when I slept … sometimes I felt like a fish stuck in a fishing net. However, the nursing staff was extraordinary at the Mayo and patiently untangled me as often as required.
My stay in the hospital was slightly longer than normal in part due to it taking a while for my bowels to “wake up” and in part because we live a two day drive away from the hospital, so I believe they erred on the side of caution in keeping me long enough to be sure I’d be successfully when I left the hospital. I left with an appointment to return in three weeks to have my foley catheter removed. The foley catheter proved to be a bit more challenging than I had anticipated … maintenance and flushing with saline seemed to take up most of my day. I was extremely tired for those first three weeks – I tried to walk as much as I could, but did end up napping a few times a day.
When I went back to the Mayo for my three week check-up and to have the catheter removed I was ecstatic. I was sure that getting rid of the catheter was going to mark my return to ‘normal’ functioning. Boy was I ever wrong!! Once the catheter was out, I realized I had absolutely no control over my bladder. I bought a large supply of continency pads (should have bought stock in the company!) and prayed for the best. For the first few days I focused my energy on trying to figure out what my new bladder felt like when it was full. The doctor told me that the neobladder would stretch to its full capacity over time…but in the beginning it sure didn’t seem to hold much. He suggested that I try to hold off on voiding for an hour and then work my way up to 2 or 2.5 hours over the next week. I found that it was easiest to do while sitting, but then when I stood up and had to make a mad dash for the bathroom! However, over the course of a few days, I increased the capacity of the neobladder successfully and have been able to go every 2-3 hours now (six weeks post-op). I also do Kegels frequently throughout the day – lots of Kegels! The nighttime continency has been a bit more of an ordeal … I tried waking up every hour, but frequently was already wet … resorted to depends and a pad the first week after having the catheter removed. As my daytime continency has improved, so has my nighttime continency and this week I have been successful three nights in a row (which means I can move down to just a continency pad at night J) I expect that within another 3-4 weeks I’ll be able to call myself fully continent. I have learned that when I tire myself out too much during the day, my control in the evening diminishes slightly. I’ve also learned to know what my neobladder feels like when it is full – nothing like the old one – and not to wait until I feel “full”.
My energy has returned rather dramatically in the 5th and 6th week post-op. I’m extremely pleased with my surgery and my neobladder. It was definitely the right choice for me. I have not had to self-cathetertize at all and somedays can almost forget the incredible ordeal my body has been through.
I’m happy to correspond with anyone considering this procedure. I can’t tell you how much the folks on the Bladder Cancer Web Café have inspired me over the past few weeks.
Diagnosed in May 2003 with TCC and CIS; Two rounds of BCG treatments; one round of BCG w/Interferon; RC with neobladder in July 2005; nephroureterectomy in February 2006.
As it has been about one year since my RC and neobladder surgery… I thought it a good idea to update my experiences. It has been an incredibly difficult year for me (and certainly for my husband as well). While I managed quite well post-surgically in achieving both daytime and nighttime continence from my July 2005 RC/neobladder, by about October ’05 I began to experience some difficulty with urination – strong urgency, no output.
When I went back to my surgeon at the Mayo for my three month check-up (CT scan, urinalysis, etc.) he found that I had a blocked left ureter – it was unclear whether the blockage was due to scar tissue from the neobladder or the result of more CIS. The surgeon had a stent placed through my back, into my left kidney, through the ureter and into the neobladder. The stent was to stay in place for about six weeks at which time an interventional radiologist would follow up to see whether the blockage was cleared. Stent caused irritation in bladder and some incontinence issues.
Back to Mayo in January … had stent removed from neobladder, but left in ureter and kidney – more tests by interventional radiologist … the hope was to open the ureter and be able to spare the kidney but it became clear that the CIS was spreading. I had developed hypercontinence and was taught to self-cath – something I had desperately hoped to avoid. A nephroureterectomy was scheduled for March.
In February I sought a second opinion at U of Chicago Hospital and was told that the kidney needed to come out asap. In a moment of urgency and near panic, we scheduled the nephroureterectomy for the following Monday at U of C. I had my left ureter and kidney removed. The kidney as removed laproscoptically and the ureter was removed through a new incision in my existing scar.
Lousy experience for me… loads of pain post-surgically. When the anesthesia began to wear off I experienced the most intense pain of my life. I was discharged in three days which seemed a bit soon as I was still experiencing a great deal of discomfort. However, in all the recovery time from the actual surgery was just 3-4 weeks. I received a very large does of antibiotics before being discharged from the hospital. Sent home again with a Foley for three weeks.
Immediately following surgery I developed terrible diarrhea. My local MD tested and felt it was c diff … I was treated with Flagyl for a month with no effect. Then was put on macrobid (very expensive med ~$40/pill) I was taking four Macrobid each day and was on this medication for a total of six weeks. Still no effect – and now my urine was full of brown debris. The surgeon at U of C wasn’t concerned; however, I knew that something was very wrong. Tried everything from the antibiotics, to immodium to probiotics. Nothing worked. The surgeon at U of C did not think I needed to be seen and responded to each of my concerns by advising me to either drink more water or eat more yogurt. I was really sick at this point – food poured right through me.
I went back to Mayo on May 8th and after exhaustive testing it was determined that I had developed a fistula (small ulcerated area where the neobladder was joined to the small intestine at the site where the left ureter had been removed). Thank God they found it – it was very small – but was having a devastating effect on my overall health. Constant diarrhea, incredible urgency, difficult cathing due to fecal matter in urine, and I just felt like crap…it was exhausting mentally and physically. I was very disappointed in my U of C surgeon for minimizing my concerns and refusing to follow up on any of it.
Initially it was thought that I would require immediate surgery – something I did not want to undergo. However, the doctor decided the more conservative measure was to try to allow the fistula to heal on its own. This meant keeping all pressure out of the neobladder (Foley catheter again!!) – and after consultation between my urologist and gastroenterologist it was determined that I would have to be on a 0 fiber/high protein diet. This was to go on for 2-3 months, ugh! Had a very difficult time with the Foley this time … it was a silicone and very stiff and I learned that the latex ones are more flexible so I had it changed. The diet was extremely challenging as I love fruits and vegetables – don’t eat much meat or eggs normally and love grainy breads. Whoa … talk about one’s world being turned upside-down. By week five – its July and wearing the foley means not being able to wear shorts – its incredibly uncomfortable. Plastic on your thigh in the height of summer heat – ugh.
I went back for my eight week checkup and learned that the fistula has not healed – urologist determined this with a simple cystogram … dye injected into the bladder and an xray, which shows it leaking from my bladder into the intestine. Surgery is imminent – but not urgent. My daughter is getting married in September so I’ve scheduled surgery for the beginning of October at the Mayo. It also means wearing the foley for another three months until my surgery – ugh, again.
This next surgery in October is a major surgery (again) … they use the same incision and I’m told that the recovery time will be close to what it was following my neobladder surgery. Because they will be working on my intestines, my uro will be working with a chief of colorectal surgery.
This has been a tough 15 months … but I still consider myself so very fortunate – except for the discomfort and inconvenience of the foley, I still feel just great. I miss swimming and running this summer (and hiking has been put on the back burner for this year)– but I plan to be back in shape for my annual January 1st Polar Plunge into the lake.
I’ve just celebrated my five year anniversary of being cancer free and thought I’d write an epilogue to my tale – my objective is to give hope to any one who is currently facing this lousy disease. There is life after cancer.
I survived my year with the foley in 2006 and even danced at my daughters wedding 🙂 The surgery to repair the fistula was done at the Mayo Clinic in October 2006 and was a complete success and from there life has just gotten better with each passing day. My health is excellent and it’s now easy to forget from time to time that I was ever battling bladder cancer.
As always, if you are reading this and I can help by answering any questions, feel free to contact me at firstname.lastname@example.org
Cindy Thomas Duffy
5/2003 Diagnosed w/Bladder Cancer
TCC, CIS treated with BCG and BCG w/Interferon
7/2005 Radical Cystectomy with Neobladder
10/2006 Surgery to repair fistula between neobladder & intestines
9/2010 Getting on with life 🙂