Recently Diagnosed with Bladder Cancer

[Manon]

Good morning,

I was recently diagnosed with Bladder Cancer.  Last month I urined blood and my doctor had me do a scan.  They detected a small nodule but all of the other organs were “normal”.  I was referred to an urologist and underwent a Cystoscopy. I have one tumor which measures 9mm x 15 mm. That’s what 16 years of smoking does to you. Needless to say I quit smoking !!!.  The urologist told me he had bad news, that I had bladder cancer.  He also said that the tumor looked “superficial”.  Needless to say I’m so scared.  I’m to have surgery to remove it from now to 1 month.  I think the hardest is waiting to have that surgery to see if it’s benign or malignant.

[Nightingale]

Hello Manon,

I am so glad you found our site and have posted your message.  It sounds like you found your tumor fairly early based on the comments your Urologist has made. Fingers crossed that your results come back showing benign.  Should it come back malignant, there is still hope.

I myself am a 12-year survivor.  My Bladder Cancer was low grade non-muscle invasive, and it came back three times.  After 7 years of regular checkups, I was given the green light to no longer needing to go back for regular checkups.

I am hosting a virtual Support Group Meeting on Thursday March 24th via Zoom; if you’d like to participate, I can privately email you the information for the Zoom meeting.  I have another new participant joining to hear what members of the Support Group have to share.  It is a great way to get questions answered and hear what others have experienced.  Send me a message by clicking “Send a Message” under my name on the left-hand margin and let me know if you’re interested.

My best,

[marysue]

Good Morning Manon:

I’m sorry to learn that you may have bladder cancer and need of us.  However, as Nightingale says it looks most likely that the tumour was found early.  Again as he says – fingers crossed for a favourable result.

The majority of us, myself included found the wait for the initial TURBT surgery to remove the tumours and then the post op wait for the results to be the toughest part of this journey.  Our mind goes into some weird and often dark places.  It will feel a bit better once you have the results and know the road that you are on. I too, am a long term survivor more than 10 years out since completing surgeries and treatment.  I had my last cysto check in the fall of 2020 and had the option to cut loose since I was 10+ years clear.  I opted for one more in the fall of 2022 of which I am still waiting on the date.  So, it can be done.

Your emotions are normal.  It is normal to be scared, angry, upset, depressed, you name it. I went through the whole gamut. Hearing the “C” word throws everyone for a loop and then some.  As for if your smoking habit caused the bladder cancer, that may be a yes or a no.  I never smoked but did grow up in a smoky house and was unknowingly exposed to a lot of environmental toxins.  I was really mad at my parents and my former community at first but realized that the anger was fruitless and the situation is what it is and I had to figure out a way to move forward.  Once I got my mind into that space it was easier to go on.  So I hope that you will not spend too much time beating yourself up over smoking.  Quitting is the best thing you can do for yourself and if you can work yourself in really good health habits of not smoking, eating better and getting more exercise (if you are not already doing these things) it will help you feel better mentally as well as physically.

The main suggestion that we experienced ones have is to do things to keep busy while you wait.  I strongly recommend doing things that you really enjoy, even if that is just something simple like delving into a really good book or binge watching on Netflix. Taking regular “mind breaks” from the situation helps you cope better in the long run.

As you are discovering, the bladder cancer journey has its own learning curve.  You will have a lot of questions as you go along.  Feel free to post them on this discussion forum, attend an online support group meeting or contact BCC to be connected with a peer support person.  No question is a dumb question.  We are here for you.   ((((HUGS))))

[Joe]

It ain’t your fault for  smoking.  The government let Tobacco companies continue to sell cigarette even if it is clear cigarettes contains many carcinogens to cause various cancers, including bladder cancer.   But, glad that you have made the decision to quite smoking.  I never smoked but I got bladder cancer.   I think it is likely malignant as your urologist mentioned it was cancer.

Background information

The wall of the bladder is comprised with epithelial tissue, connective tissue and muscle tissue.   The epithelial tissue consists of three layers of different types of epithelial cells.  The top layer, which is facing the lumen of the bladder consists of a single layer of .1 mm size umbrella cells or also called superficial cells. The structure of superficial cells is designed to prevent urine and toxins in urine to penetrate through the epithelial layer of the bladder.  Below the superficial layer, there are 3-5 layers of intermediate epithelial cells, which are about 0.02mm cuboidal shaped.  The lowermost layer of the epithelial tissue is called basement layer or basal layer which consists a single layer of 0.01mm spherical shaped cells which act like glue to the connective tissue.

In essence there are two types in bladder cancer.   Both types will grow fast.  In other words, cancer cells constantly divide into two cells because the cells are receiving a signal to start the cell division without control, where normal cells of the lining of bladder get a signal to divide only when it is required, i.e. every 200 days or so.  Once the cell receives a signal to divide, it takes about a day to complete the division.

One type of bladder cancer will grow but will not progress downward past epithelial tissue.   The other type of bladder cancer will progress downward reaching the connective tissue and the muscle tissue.   There is the third type of bladder cancer called carcinoma in-situ or CIS, which will grow horizontally within epithelial layer, but eventually progress downward toward the muscle tissue.   The latter two needs aggressive treatment to prevent the progress to the muscle layer, as once the tumor reaches to the muscle tissue the cancer cells tend to escape the tumor and metastasize organs via blood vessels and lymphatic vessels in the muscle tissue.

Cancers are caused by accumulation of mutations in key genes.     We know now which gene mutations are involved with bladder cancer.  The type the tumor which grow fast but not progress to other tissues tends to high expression of fibroblast growth factor receptor (FGFR3)

Your situation

Your urologist said that your tumor looked like superficial.  A urologist, when he or she is very experienced and had seen many tumors and reviewed pathology reports, usually can tell the cancer type by looking at the tumor in cystoscopy.   So, I assume what the urologist  saw was the papillary tumor growing into the lumen of the bladder and  the shape and the looks of the tumor was the type which does not progress beyond the epithelial layer.  Still we need to wait till the pathology report from the tumor specimens which the urologist give to the pathologist after the removal of the tumor.

The treatment for non muscle invasive bladder cancer differs according to how deep the tumor has progressed to and how badly different the cells of the tumor look compared to normal cells.   The treatment also depends upon the size and if it is multi focal or not.  Your tumor was less than 3 cm and a solitary tumor, so this is good news too.

Hopefully it is truly superficial and cells are not so bad looking, then the treatment will be just removal of the tumor by TURBT, then put on surveillance only with regular cystoscopies .

 

Suggestions

A month from cystoscopy from TURBT is too long.  TURBT is usually done within two weeks.  I would ask to expertise TURBT.   TURBT requires an Operation Room, so the availability of OR can be the bottleneck.  Also, your urologist may be thinking that because yours look superficial, it is okay to wait a month for TURBT.   In my case, though it was before the pandemic, I visited the urologist office instead of calling the office and asked if they could expertise the procedure.   The reason I say is that sometimes what the urologist see in cystoscopy may be different when it is looked at under a microscope by the pathologist and the sooner the tumor is removed the lessor chance it can progress.

If TURBT is not available sooner,  I would request cytology while you are waiting for TURBT.  Cytology is a urine analysis and a cytopathologist looks at cells which were fallen off in the urine using a microscope just like a histopathologist looks at specimens from TURBT.  The cytopathologist can tell how bad looking the tumor cells.  If the cytology reports says Negative for High Grade Urothelial Carcinoma, the cytologist saw epithelial cells but none of them looked very bad compare to the normal cells.   Then, I will be more comfortable that TURBT is delayed a bit longer than two weeks.

 

best

 

 

 

 

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[Manon]

Well Getting my TURBT on April 12th.  Finally after receiving the report of the cystoscopy it’s not 9mm x 15 mm but 2.5 cm which is pretty depressing 🙁  That being said won’t know until my pathology report.  My urologist called and said it looked like it is superficial but how can a 2.5cm tumor be superficial?  really looking forward to getting it out of my body .

[Nightingale]

Hi Manon,

Very glad to hear you’re getting your Turbt on April 12th.  Also, glad to hear your Urologist indicate again, that the tumour looks superficial.  So, that is twice he has indicated superficial.  Try not to worry, and yes it’s easier said than done.  As this surgery is prior to the Support Group Meeting on Apr 28th, and if you would like to talk before than, please private message me with a phone number and I’ll call you.  Sometimes talking it out on the phone is better.

My best,

[marysue]

Hi Manon:

Best of luck with your upcoming TURBT.  Tumours as you may already know come in all sorts of sha  pes and sizes.  They can be large and shallow, small and deep, small and shallow, large and deep. It may be some comfort to know that the majority of bladder tumours are diagnosed at early stage.  So positive thoughts, prayers and fingers crossed that this will be the case for you.   ((((HUGS))))

[Manon]

Good morning,

I have a question.  As you know I was diagnosed with bladder cancer on March 11.  Getting my TURBT on April 25th.  I haven’t urinated blood since before being diagnosed and now I urinated blood this morning , once.  Is this normal?

[marysue]

Hi Manon:

Yes, people can have visible blood off and on until the tumors are removed.  You may have had blood in your urine all along but it was not visible,  This happened to me both times while waiting for a TURBT.  It is a bit disturbing but not necessarily an indication that things are getting worse.

Just an FYI – this is why some people don’t get diagnosed soon enough.  They experience visible blood in their urine and then it goes away so they think the problem resolved itself and that is not always the case.

April 25th is coming up in just over 2 weeks.  I know that the wait might seem long and anxiety will be high until you have the pathology results.  Hang in there.  Best of luck.  ((((HUGS))))

[Nightingale]

Hi Manon,

MarySue is right.  I myself only noticed the blood when I was physically exerting myself, like running in very hot weather.  This happened on and off, until I had my first Turbt.  Not to worry I am sure all will be well.

My best,

[Manon]

Thank you,

I was supposed to have my TURBT on April 12th but tested positive for COVID 🙁  Now have to wait until APril 25th.  Hopefully it doesn’t get worst .

Thank you again

[Manon]

Thank you

I know Marysue indicated it should not get worst but i’m so worried.

THank you everyone it is greatly appreciated

[Manon]

Hi Marysue, do you know if a delay of 2 weeks can have the tumor spread?

Thank you

[marysue]

Hi Manon:

As for the risk of tumour spread in your case, that is a question for your doctor to answer. I honestly have no idea.  But that being said, when someone is. diagnosed with covid or some other health complication develops doctors have to make a decision that balances the risks of delay against proceeding at the originally scheduled time.  In this case they have thought it prudent to delay your surgery by a couple of weeks to allow you to get over covid and it was most likely to reduce the risk while being under the anesthetic for the surgery not to mention the risk of spreading covid to staff or patients if you were in hospital.

((((HUGS))))

 

 

[Nightingale]

Hi Manon,

Regarding the tumour spreading.  That is a difficult question to answer.  Every patient is different and so it’s a question best answered by your doctor as MarySue indicated.  I can tell you that I have a gent in my Support Group who ignored the signs for over a year and he is now a survivor!!…go figure!

My best,

[Author]

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