Derek A’s Story

[Nightingale]

To give everyone a bit of background about myself, prior to my bladder cancer I was a 75 male, in very good physical shape, with no other ailments or previous illnesses. I was very active (ski, tennis, hike, bike etc.), and lived mostly in the country near Mont Tremblant.

On February 16, 2016, I noticed blood in my urine. On March 11th, I had a cystoscopy exam and urine analysis. The doctor said I had cancer. I had my first TURBT on April 6th to remove a tumour. On April 8th I received my pathology report with the diagnosis of “High-grade urothelial papillary neoplasm with invasion into the lamina propria”… but not muscle invasive, i.e. T1 HG (Stage 1, High Grade bladder cancer). The single tumor was about 2cm long. On May 27th, I started BCG treatments. I had a few problems with catheter insertion failures, but this was resolved by changing to a folysil catheter. I had minimal adverse reactions to BCG and was fully back to form and playing tennis within 36 hours following treatments. My last BCG treatment was on July 12th.

On Friday August 26th, the follow up cystoscopy showed a new tumor in the same location. The surgeon said it was not a BCG failure and that I would have another TURBT in 3 to 4 weeks. We were just too shocked to even ask any questions. That night, my wife and I were on that “roller coaster hurling downwards”.  It was like a black cloud over our head. We had knots in our stomachs.

The following morning we decided to be as proactive as we could. I had seen the Bladder Cancer Canada website in a previous “Google” search. So joining Bladder Cancer Canada was a first step. We attended a BCC sponsored Forum in Montreal on September 14th. At the forum, my wife, son, and I heard 4 doctors speak about the various options available to treat MIBC and their advice to seek second opinions.

We next contacted and made appointments with our doctors to discuss my situation. My wife and I both like to know why/what the doctors are doing, so we continued to read articles by the CUA, NHS (England), BCC, etc.to prepare intelligent questions and to understand what we were facing.

Finally, getting my endorphins flowing was important so some personal activities included a day’s kayak in Parc Mont Tremblant, biking with my wife on the Parc Linear, a few days of doubles tennis, and thank goodness, a day of rain (and relaxation). Socially we kept quite busy, with family and friends (and BCC) providing much encouraging support.

My second TURBT was on Sept 21 .The surgeon said that he was pleased with the operation and that he thought that he had removed the whole tumour. However on the evening of Sept 28th, he phoned to say that unfortunately one of the tumours was muscle invasive.
The pathology report revealed that there were actually two tumours, both high grade and one was muscle invasive. My wife and I were devastated!

My urologist does not perform radical cystectomies so he referred me to a urologic surgeon who by coincidence had spoken at the BCC forum. My wife and I went to see him, fully expecting to discuss when I could have the radical cystectomy surgery (RC), and what type of diversion would be the most suitable for me. To our complete surprise, he suggested that I might be a good candidate for the bladder preservation procedure of “radiation with chemotherapy”.
A few days later we met with the radiation oncologist who also had spoken at the BCC forum and he too agreed that I should consider this option.

So it was two different doctors at two different hospitals giving us the same advice. Both basically saying that longer term outcomes (life expectancy) for cystectomy and radiation with chemotherapy were similar, but the latter offers a reasonable chance of avoiding a major surgical operation longer term and of keeping the bladder. Without hesitation, we decided to follow the doctors’ advice.
It would have been helpful or at least reassuring to read about some personal experiences with chemo/radiotherapy, what to expect etc., but there was little on the BCC blogs and elsewhere. We did read various research papers etc. in an effort to obtain additional information but this was all pretty technical. Consequently, in part, this is why I am writing about my experiences.

We met with again with the radiation oncologist on Oct 6th, who said that a PET scan was needed as a starting point. The scan showed 1 lesion on the bladder and 2 lesions on the prostate, but no evidence of metastasis. A cystoscopy showed no new tumours and the biopsy of the prostate lesions was benign. So now my official bladder cancer diagnosis became T2HG. (Stage 2, High Grade).

My medical oncologist in consultation with the radiation oncologist scheduled me for 4 weeks of radiation, with chemotherapy on weeks 1 and 4. On December 19th I started week 1 of radiation with chemotherapy by infusion pump. I found that the chemo infusion pump attached to a PICC line quite awkward and uncomfortable especially when sleeping. I finally figured out that attaching the pump to my arm with Velcro straps was a much more comfortable arrangement. For showers, I wrapped clear wrap over the PICC line, followed by several layers of cling wrap, over the bandages. When wearing the chemo pump, the line was long enough to keep the bottle outside the shower. The PICC line had to be flushed every 2 or 3 days. The CLSC (Quebec visiting nurses) did this for me.

I started having “plumbing” problems a few days after starting the procedure. I was not incontinent, but experienced urgent frequency every hour or so. I became somewhat tired from interrupted sleep and possibly the treatments. Weeks 2 and 3 were shortened by the holidays, and I had 4 days of radiation only. By Christmas I had very painful mouth sores. My doctor prescribed what he called “magic mouth wash”. It worked and a couple of days later I was cured. Week 4 was another week of radiation with chemotherapy by infusion pump. Jan 16th and 17th were holiday makeup days of radiation only.

My hospital appointments were at 8AM except for when the chemo pump was being attached. That time slot meant less chance of patient backups but the getting up early added to my tiredness. Otherwise, I had no other symptoms. Radiation treatments were very quick and painless. From check-in to leaving, the majority of times took about 30 minutes, including treatment time of about 15 minutes.

I felt fine most of the time; no nausea, no temperatures, no loss of appetite, and gained about 10 pounds from lack of exercise and my wife’s good cooking. I felt totally healthy and everyone said that I looked fine. I even skied a few times a week after my treatments finished.  Throughout this whole process, we went out to lunch or dinner several times, had many short walks of an hour or less, and saw friends and family.  Everything (plumbing wise) was back to normal by Feb15th. We were now facing the next round of treatments with a very positive outlook.

On Feb. 27th, I started 8 sessions of chemotherapy treatments over a 12-week period that would target any free-floating cancer cells outside the bladder. Week 1&2 are chemo sessions of about 2 ½ and 1 hour respectively, week 3 is off. This cycle is repeated 4 times finishing on May 5th. The success or failure of my treatments will only be known sometime in May when I have a cystoscopy at the end of these additional chemo cycles.

Everyone’s situation is unique; their choices, risk tolerance, medical situation etc., are personal. For me, I am very healthy, and have no other medical complications, and accept the possible reward of keeping my bladder versus the risk of having to do a radical cystectomy later on if this strategy fails. We felt confident with the doctors that we met and who are now treating me. The hospital has an excellent reputation as a cancer treatment center.  When one of the doctors said to us “Your problem is now my problem”, my wife and I entered into a pretty good space.

Cycle 1 started off with no problems, however on March 8th, my left arm became inflamed, red, and a vein was very hard. An ultrasound revealed a superficial clot a few inches below my shoulder. I was very tired, and my white blood count and platelets had dropped significantly. The next cycle of chemo was postponed for a few weeks. I was given an injection to boost my WBC and a transfusion of platelets. The clot would simply be monitored.

Cycle 2 started on March 31st.  This time I became very tired, and had back pains, metallic mouth taste, depression, and could barely drag myself across the street. I gained about 12 pounds in 10 days from fluid retention. On April 18th I developed another clot, this time on my right arm. Again, an ultrasound revealed that is was a superficial clot a few inches below the shoulder. In discussion with my oncologist, I said that I wanted to think about stopping my chemo sessions.

The next few days, I read extensively, consulted with others, and finally decided to stop further chemo treatment. The feeling was that the very real downside risks from further clotting was not worth the possible upside protection that chemo might provide. On April 25th, I met with my oncologist and we agreed to stop further chemo treatment.  I rapidly recovered my strength, and both clots were slowly being reabsorbed. On May 23rd, I resumed playing tennis. I felt great.

On May 16, a CT scan saw no signs of any bladder tumors. On June 6th, I underwent a cystoscopy with resection. And on June 16th, my oncologist gave us the wonderful news that the pathology showed no cancer! We were greatly relieved!
Starting from the muscle invasive pathology report in Sept 2016 until a cancer free pathology in June 2017 has certainly been a long journey. It hasn’t always been easy. The chemo was very rough, and the radiation was tiring, but most of the time I felt and looked just fine. And I still have a very functioning bladder!

I will now be on a monitoring schedule every 3 months for the next few years. While I know that bladder tumors often reoccur, my focus is on the present and I will try not to worry too much about the future.
I have written about this because chemo/radiation as an alternative treatment for muscle invasive bladder cancer seems to be the lesser of choices compared to cystectomy, and mostly recommended for those who would/could not tolerate a major operation.
I hope that my story is helpful for some readers to have meaningful discussions with their doctor.

What is a Partial Cystectomy?
Some patients that are diagnosed with muscle invasive bladder cancer may be able to save a portion of their bladder instead of having it removed altogether and needing a new urinary diversion. This option preserves urinary and sexual function. Candidates are carefully selected and usually have to meet the following criteria:
1)    There is only a single tumour that is on the top or high up on the sides of the bladder.
2)    Tumour is less than 3cm (just over 1 inch)
3)    Patients have good bladder capacity.
4)    Tumour is diagnosed as adenocarcinoma – a rare form of bladder cancer that starts in the muscle wall of the bladder.

• This topic was modified 2 years, 11 months ago by Nightingale.

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