Sue A’s Story

[Nightingale]

I’m newly diagnosed with bladder cancer and will be having a radical cystectomy surgery in the future. What do people do to deal with the seemingly interminable wait to find out whether chemo will be needed or whether it will just be surgery? I wasn’t told the grade or stage, but from what I’ve seen on the Bladder Cancer website, I’m thinking that it’s probably Stage 2 or 3.

I have an abdominal-pelvic CT scan this coming Friday, and I don’t know whether the contrast dye will be through an IV or if I’ll have to drink it.

I thank the folks at Bladder Cancer Canada for their kind advice. I wouldn’t have thought of, or had the nerve to ask for a copy of the pathology report. (It does clash a little with my family’s tendency to embrace denial and “ignorance is bliss.”)  Fortunately thanks to the TV ads advising seeking medical help at signs of blood in the urine, I  went to the emergency department at our local hospital the same day I experienced this.

I’ve been referred to a doctor at Sunnybrook, but his office is closed until Aug. 4 and I’m hoping/praying that they will be contacting me soon. According to the uro/surgeon I saw here, the surgery will be done at Sunnybrook. Both my and my husband’s families live in Toronto, so I ‘m glad the surgery will be there.

This all started June 8.  I’ve had the TURBT and a thorough CT scan will be done on Friday, so I guess it’ll be another week before I even get a call for an appointment with the doctor at Sunnybrook.  If he’s that popular, I’m afraid it will be September or later, and by that time…well… I don’t even want to think about it. I really want to be at Sunnybrook.

My family and I have a long and sad history of being dusted off by members of the medical profession, so I have a hard time believing that they see patients as anything more than billable slabs of beef.

I recently watched a learning video on the Odette Centre’s web site. A doctor was giving a talk/lecture on the topic of bladder cancer treatment. He said that the “gold standard” for treatment where an RC was indicated was chemo followed by surgery. Just still trying to anticipate what may happen.  Quite frankly, at this point I still know nothing more than I did 7 weeks ago.

On June 8, I was told it was likely bladder cancer. On June 22, after an ultra sound and CT scan I was told it was definitely bladder cancer. I had a TURBT procedure on July 8th. On July 25th, I was told an RC was necessary. I wasn’t told the stage or the grade, but I’m assuming Stage 2 because of the RC. There was mention of a referral to a doctor at the Odette Cancer Centre. Just still trying to anticipate what may happen. I guess I’m wondering if any chemo besides the BCG is ever used?

I suppose because of vacations, that’s the last I’ve heard. I emailed the doctor’s office at Sunnybrook this morning and had to send a fax to the urologist as his office is closed until Aug. 15. His secretary may or may not be there. So far, I’ve been given no idea of when I will be given an appointment with a surgeon/oncologist who can tell me what kind of treatment should be begun or when.  The waiting is the worst part.

Maintaining a positive attitude is now impossible for me as I just don’t know when to expect any kind of help. I’m afraid to start looking at another hospital as I’m afraid the whole process would have to start again from square one.  I know Toronto General Hospital won’t accept an ultrasound from another source, and I’m afraid they’d be the same with CT scans.

I’m desperate for encouragement. Is this kind of wait time normal? Am I being unrealistically demanding – that is certainly a possibility – I’ve just run out of coping mechanisms. Perhaps I’m a victim of vacation timing, and I wouldn’t deny these doctors a vacation. Sadly, I am a coward and am very bad at being assertive.

Every doctor I get referred to is on vacation. So, wait, wait, and wait for a phone call. Now I’ve been told that I have to see a Medical Oncologist to get an opinion on whether or not I need pre-op chemo. And the doctor I was specifically referred to is on holiday until Monday. And even then there’s no guarantee when he/she will be available for a consultation. I asked how long it’d probably take to actually get an appointment and was told about a week. So, next week or the week after that?

I asked if the nurse if chemo is necessary, how long would it take for the treatment to begin.  I was told it depends on the method of delivery. I’m very frustrated.  It’s been over two months since I was told it was highly aggressive BC, and STILL no treatment has begun. There is STILL no date that anything will begin or be done.
Still waiting to get the pathology report in the mail, but now I’m afraid to open it.

FINALLY…I have just received word that I have been given an appointment at Sunnybrook for this Thursday. I know it’s really just the first step, but it’s a step I feel like I’ve waited an eternity for.

I met with my surgeon and some of his team yesterday. After the meeting and discussions, I felt incredibly lucky to have been referred to him and to be having the surgery at Sunnybrook.

My surgeon certainly favours the neobladder. I realize that it’s ultimately my decision and I have read and reread posts on various sites about the neo and the IC. It always comes down to the fact either way the final experience is very much each individual’s own, and there are positive and negative stories for each.  Most people are happy with their final decision. That being said, a big part of me thinks that if the surgeon is so pro-neo, then I should go along with his decision. I just don’t know if reading any more conflicting reports is going to make the choice any clearer.

I am thrilled beyond belief to say that I finally got a date for my RC and neo surgery…. September 21. I can’t begin to describe the amount of stress that has disappeared from my life.

My problem is that I am the wife, and I worry about what kind of home support I’ll have.   My husband doesn’t really want to give me any input on the choice of diversion. He says, “It’s your body, your decision,” and “Just tell me what to do and I’ll do it.”  Honestly, he’s a good person, but I think he’s just scared and this denial is the only mechanism he knows.

My husband and I had what my sister-in-law would have called a “domestic”. The result was that we had a long discussion and he said that he would be OK with learning/helping with my self-catheterization and anything else that might come up.
He has finally shown some real support and understanding, and I now know that he has realized what might be asked of him.

I’ve been surprised by friends I expected support from, but didn’t get, and by people I didn’t expect support from, but who did show it.  But, I have a tendency to be nervous about barging into sensitive situations. This has all been a learning experience for me and perhaps one of my biggest lessons has been about the importance of showing support.

People are complex and you never know what kind of life experiences have shaped their responses to situations like this. My husband and I will both undoubtedly be learning a lot about patience in the months to come.

I DO know that I am profoundly grateful to BCC and the people who have shared both their personal experience and positivity.

I’m so tired of waiting. Surgery is on the 21st, but it’ll have been 3 months of waiting, waiting, waiting when that day arrives. Also, I’m now waiting to hear if my benign brain tumour has suddenly decided to take a growth leap. Phew! I heard that it hasn’t, but it will influence the delivery method for the post-op pain meds. That’s fine. I get the morphine pump.

 

I have read in the Bladder Cancer Canada Patient booklet that a washable mattress protector is necessary. Sixteen days to go now, so of course I’m trying to think of stuff I need to be prepared with. How is it that the days seem both so long and so short now?

So, milestone after milestone… I had the RC surgery and got my neobladder on September 21 as planned. I was happy when the staples came out and happier when the urostomy bag finally went on October 17th.  I have a cystogram on November 7th, and if the surgeon is happy with the neo healing, I’ll lose the catheter.

I had great home care support from the CCAC (Community Care Access Centre). Home nurses came once a week and took vitals, helped with changing the urostomy bag, removed the staples, and so on.

When I got the pathology report from the TURBT in July, the tumour was graded and staged at T2b. The pathology report following the surgery revised the grade to T3b. The lymph nodes were clean and there was no metastasis. The surgeon said the fatty tissue around the outside of the bladder had cells that indicated post-op chemo had to be considered and wants me to see a medical oncologist to get an opinion.

I have an appointment on November 17th with the same oncologist I saw before. He said he didn’t think it was necessary, but that it was a good idea. The surgeon said he doesn’t think chemo is necessary, but that it’s my decision.  I’ll get a second opinion on the chemo, but why do they put patients in that position? I have no medical training, so how can I decide? Does it just come down to how big a risk-taker I am?

The surgeon said that surgical oncologists tend to be optimists and see the glass as half-full, and that medical oncologists tend to be pessimists and see the glass as half-empty.  Anyone have a similar quandary?

I didn’t have any chemo before surgery, but that was on the surgeon’s advice. I get the impression he thinks that the effects outweigh the benefits in a lot of cases although of course I have no idea if this is always his advice. I’m going to try and insist that I get clearer answers when I see him in November. That and opinions from two medical oncologists should make things clearer. It’s basically what I’ve heard from other survivors: Better to be safe than sorry.

A few months later…

The CCAC has a nurse who specializes in incontinence. She came once a week for a few weeks, did vitals, did dipstick tests to make sure there was no infection, and taught me how to self-catheterize. I can’t describe that experience because it’s just too personal and absurdly hilarious. So far, I’m lucky that I don’t have to use a catheter. I did a couple of times just out of curiosity, but it wasn’t worth the effort.

This bladder training and spending a small country’s worth on continence products had me in a week-long snit. I did find out that I could claim them on my income tax! However, I finally got my grateful back on. I’m cancer-free and told by two med-oncologists that no chemo was necessary. I am, however, scheduled to begin a clinical trial for an immunotherapy drug. No details yet as to whether I’ll be getting the actual drug or not. A bit scary, but…

I’m doing well on the drug trial. The trial I’m on continues until December.  I’ve had two CT scans, and both of them have come back fine.  There’s so much follow up. I have blood work done every three weeks. They also do urinalysis, ECG tests, and ultrasounds.

About two weeks ago I saw the surgeon’s resident who was present during my RC. We reviewed the neo’s “behaviour”.  I have another follow up with him in December to review whatever the urine cytology test reveals.

Before the surgery, I read somewhere about finding a physiotherapist who could check to see that I was doing Kegels properly, I ran into the problem of summer vacations again. I live in a smaller town so there aren’t that many available. That meant I only had about two weeks to practice. I wish I had known about this earlier. I think the more Kegels, the better. The post-op catheter meant I couldn’t practice for the six weeks I had it. So after I lost “Cathy”, I went through the exercises the physio had given me several times a day. Slowly but surely, I was able to recognize when I had to go, and how to get to the bathroom on time.  Note to self: Tighten the pelvic floor muscles and walk slowly.

No two ways about it, the first several months are tough, and 11 months post-op, I’m not problem-free. Long car trips or after having to drink the litre or so of contrast dye for a CT scan is more than the neo can deal with. However, I am down to one Poise pad per day (mostly) and I still wear Depends to go to bed, but even they are relatively dry in the morning. If I know I’m just going to be at home, I don’t use anything and it’s fine.

 

What is an Indiana Pouch?

The Indiana Pouch is another type of orthopedic bladder.  It is created from a portion of the large intestine and a small portion of the small intestine to create an internal pouch to collect urine.  The portion of the small intestine is used to create a stoma similar to what is used for the ileal conduit (ostomy) but it is shorter. The ureters are connected to the pouch and a person uses a catheter several times a day to drain the pouch through the stoma. The stoma is covered up with a bandage.

Advantages of Indiana Pouch: no external pouch, no odors or body image issues

Disadvantages of Indiana Pouch: longer surgery time, healing of both small and large  intestines, need for catheterization, risk of leakage from stoma, scarring of stoma making catheterization difficult, stones in pouch.

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