Feeling overwhelmed

[Patricia C]

Trying to wrap my mind around everything. I was diagnosed with bladder cancer in October.

A bit of background information. I am a 55 yr old female, non smoker and with no other risk factors. I had been experiencing blood in my urine, pain and frequency since the start of this year. Had gone thru the regular route of suspected UTI, urine tests blood tests and was waiting on an ultrasound. Finally on September 17 I went to emergency as I had a significant amount of blood the day and evening before. Ultrasound did not pick anything up however they did refer me to a urologist. My first scope was done on September 27th and the urologist said he would need to see me in the operating room as soon as he had the scope in.

October 12th I had my first TURBT surgery and came home with a catheter for 7 days. On October 19th the urologist confirmed it was cancer. The information from the pathology report states it is papillary urothelial carcinoma, invasive high grade with tumour invades laminate propria. Perhaps someone could break that down for me?

November 4th I had my second TURBT and was supposed to have a mitomycin treatment in the recovery room. He opted not to do the chemo treatment as he had to make deep cuts and was concerned about leakage from my bladder to my bowels.  This time I had the dreaded catheter for 10 days.

Today I had my follow up phone appointment and unfortunately the pathology from the second TURBT is the same as the first with cancer still evident.  He talked about the possibility of bladder removal but still wanted to peruse other avenues.  He consulted with 2 of his colleagues and now a third TURBT will be scheduled. He is concerned with the location of the tumour and how deep he will have to go again. He feels there is the possibility that he could perforate the bladder and then will need to open me up to repair.

This is all happening so fast! My head is spinning.  Any words of wisdom or encouragement from others who have had a similar situation would be appreciated.

I have been trying to stay positive and take one day at a time but this sure feels like a lot in a short time.

Thanks for letting me vent!  Patricia

 

[marysue]

Hi Patricia:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  You have had quite the adventure so far, and I don’t blame you for feeling overwhelmed.  I think all of us feel that way especially in the beginning when we are trying to learn what is happening and all the lingo that goes with this journey.  Sometimes it is the speed of how this whole adventure unfolds that adds to the feeling of being overwhelmed.

My diagnosis was at a little earlier stage than yours so a repeat TURBT at the beginning wasn’t necessary.  To my understanding about where you are at it sounds like the cancer was in the lamina propria which is the first layer of the bladder wall just under the surface.  The bladder wall is essentially several layers.  There is the surface where most cancers start, the next layer of lamina propria, then  the muscle wall, then the fat layer and finally the outer surface.  When cancer has reached the lamina propria that is often referred to as Stage 1, the muscle wall is Stage 2, the fat layer is Stage 3 and finally the last is Stage 4 and by that time the cancer is often considered metastatic meaning that it has potentially spread to other areas of the body.  Bladder cancer is also diagnosed as high or low grade.  High grade means that it is aggressive and has the potential to progress further.  Low grade is the opposite.  It is slow growing and may not progress or at least not as fast.

Stage 1 where you are potentially at is probably one of the more tricky stages for a urologist to deal with.  Despite my description of the bladder wall being in layers, the actual wall is not very thick so your uro is rightly concerned about how far he can cut and do the surgery safely.  It sounds like from what I read in your post is that he still has doubts about it being Stage 1 and wants to do a third TURBT to confirm whether it is Stage 2 and actually in the muscle wall of the bladder.  If it is Stage 2, the usual route of treatment is bladder removal and may require chemo before or after the surgery.

As mentioned Stage 1 is tricky and depends a lot on the location of the cancer and type of tumour(s).  Sometimes a patient does choose to have their bladder removed at Stage 1 to ensure that they will not have to do a bladder removal surgery if it recurs at a more advanced stage.  Some patients will choose to try to fight to keep their bladder and do follow up treatments with BCG (Bacillus Callumette Guerin), Mytomycin C or another drug.  All that being said, the choices you will have will depend on what your uro discovers at your next TURBT assuming it goes ahead.

My suggestion would be to clarify to following:

1) Ask about the location of the tumour and why he feels it is so concerning.   This may clarify some of the difficulties around your diagnosis process and potential treatment choices going forward.

2) Ask about what other avenues he is considering pursuing – a) follow up drug treatments after this TURBT i.e BCG or b) some form of bladder preservation therapy which is   usually a combo of chemo/radiation or c) any other ideas

3)  If there are choices about which route you could take make sure to ask about the benefits and risks of each.  Once you have that info you could ask Bladder Cancer Canada to connect you with a peer support volunteer that would have done the same route of treatment that you are considering.

4)  There are links on the main page of this website to explore and get more information.  There are also patient booklets that you can download or if you want a hardcopy you can contact Bladder Cancer Canada and one will be sent to you free of charge.

You have a lot to get through and find out in the near future.  This won’t be easy but we are here for you.  And yes, there will be days where you are more positive and days where you are not.  Please give yourself permission to have those “bad” days.  I have certainly had my share of them.  The bladder cancer journey has sometimes been referred to as a “roller coaster of emotions”.  Now is the time to be kind to yourself.  Right now, you are your number one priority.  My suggestion as you go through this, would be to find ways to lower your stress and distract your mind for periods of time each day.  I did that by keeping busy with sewing projects and losing myself in some juicy novels for an hour or two here and there.

I want to wish you all the best going forward.  Please reach out with any questions or concerns.  (((HUGS)))

[Patricia C]

Hi Marysue,

Thank you for the reply, detailed information and suggestions.

Apparently the location of my tumour is in the top part of the bladder and I think he referred to it as the dome? He consulted with the other urologists as he does not do bladder removal surgery and was hoping one of the one who does would be able to perform the 3rd Turbt as kind of a second opinion. However they are fully booked right now and felt the 3rd surgery should not wait so he will do it again and then confer with them. It sounds like they all support and work with each other well.

He did not mention the chemo treatment after the next surgery as it will be too deep as well. If things go well after this one then I will start BCG. I also had a CAT scan on Oct 27 and so far there appears to be no spread. A couple of small cysts on the liver that at this point they are not concerned about.

I have found watching the hallmark Christmas movies to be a bit of a distraction. It’s funny as I have never been a big fan of them in the past but the a re good mindless entertainment right now.

Thanks again,

Patricia

 

[marysue]

Hi Patricia:

It sounds like your urologist has a good plan in place to get things rolling for you.  The urologists here in Calgary work together as well.  Some don’t do bladder removal surgery but only TURBTs and/or prostate surgeries. A couple of others do mainly female bladder issues.  If one needs the RC they refer you to one of the big guns that do it.

I second the mindless entertainment.  It is whatever works.  Back in 2002 when I was in hospital for an emergency hysterectomy, the only entertainment were the Harlequin romance novels from the volunteer who brought around the book cart every few days. She had nothing else on the cart.  As most people know, they have a lot of erotic scenes in them.  It is not the type of book I normally read and certainly didn’t think I’d enjoy especially after having female parts removed and doubting that I’d ever enjoy sex again, but I was bored so I gave a couple of them a read. To my surprise, they were a great distraction.  Even funnier was when my room mate who had had the same surgery asked to read the books when I was finished.  Not knowing her background or if she was familiar with that type of book I cautioned her saying that the books had a lot of “racy bits.”  She replied, “Oh good.  I love racy bits.”  It gave us both a laugh and we enjoyed some good conversation about the books.

After I got home from my first TURBT in the fall of 2008, I found myself gravitating towards stories of women who were facing major life challenges.  Even though the stories were fiction, I found that I was able to draw strength from the characters.  The books were also a distraction while doing BCG treatments.  As mentioned it is whatever works.   All the best for TURBT #3.   ((((HUGS))))

[Patricia C]

Update

Had the 3rd Turbt on Monday and miracle of miracles was able to come home without a catheter! So now to wait on the pathology results and hopefully start BCG treatments in the new year.

It’s amazing what a difference it makes for recovery without the catheter. I realize I am early in my journey but will take this small win.

Patricia

[Patricia C]

Love the story about the Harlequin books. Still lots of Hallmark movies for me to watch 🎄☺️

[marysue]

Hi Patricia:

I’m glad to learn that your third TURBT went well.  I second the notion about going home without a catheter.  I was fortunate both times that I had the catheter removed before going home.  Both surgeries were overnight stays and I had the “joy” of being woken up around 5AM for the night nurse to remove the catheter before going off shift.

On a bit of a humorous side note – when I was woken up early when I had the first TURBT, I told the nurse that I was having the dream of a lifetime helping one of my favourite actors from a TV crime drama solve a crime and now I would not know how the case would turn out.  She got a laugh and with a bit of sarcasm apologized for obstructing justice.

Still, I was glad that I did not have to deal with the catheter at home.  As for the crime?  Only Agent Gibbs knows how it turned out.

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