This is Gene – Diagnosed on July 7th

[Gene]

Hi,

I live on a peaceful acreage in grain and cattle country just northwest of Edmonton with my wife. I’m 66 years old and have been in perfect health all my life until this diagnosis. It definitely comes as a shock to the system.

My diagnosis is papillary urothelial carcinoma, mixed high grade and low grade with focus of invasion into lamina propria. The pathology report states muscle invasion as negative. This report was on July 20th which was the date of my TURBT.

On August 24th I had a CT/PET scan that came back clean ( no spread to other organs). On August 31 I had another cystoscopy that showed more tumors. My surgeon says I’m a high risk guy as there is a lot of tumor and my bladder has to go. We meet with him next week to finalize details.

It has taken me a while to come to grips with the fact that I need this surgery but now that I have, it’s time to educate myself and move on.

I’ve read a number of articles on this site and it is so nice to hear other’s stories. Thank you to all of you.

[rock2013]

Hello Gene, I fully understand and welcome to the site. I had been healthy all my life until one day at age 72 while travelling in the Niagara region I started to see blood in my urine lots of it. 4 days in Niagara emergency and later when I returned in the Ottawa region cysto, TURBT AND A HIGH GRADE stage 3 invasive and aggressive bladder cancer. 26 May 2014 bladder, 21 lymph nodes, semen vesicles prostate were removed, surgery took 5 hours and 20 minutes. 6 days in hospital and 8 weeks recovery at home and lots to learn. No doubt you will go be in a roller coaster of emotions. I am now on stage 3.

The fear of the unknown, 14 months later I feel good, not confirmed cancer free yet but in a few years I hope. All the abdomen SCANS Ultrasound and other tests are good. A key issue is to remain positive. Take your time to choose between the external bag (I LLEAL CONDUIT ) what I chose, or a neobladder, zareconstructed bladder. There are pros and cons to both surgery. Of course, the Neo takes much longer. Discuss it and do your research.

Any questions prior or after surgey, feel free to ask, this site is loaded with information Sam

[cheryl9]

Hello Gene

Can definitely relate to the wack between the eyes especially when one considers themselves to be healthy. I used to pride myself on never being sick (not even a cold) while my staff were continually getting sick (real not fake). Even my one super healthy and fit staff member would get a cold once or twice a year. Definitely makes one sit back and re-evaluate just how healthy one really is when there is a BC diagnosis. One good thing out of it, though: if one starts the journey healthy then one should be able to fight the cancer better.

One thing I am seeing on this site: some doctors react with bladder removal a whole lot faster than other doctors. Of course, every situation is different but I still wonder if some doctors react too fast. Have you considered a second opinion? BCC can provide recommendations for your area and it might be worth it.

Doctors reacting differently: as an example, I have a cousin with BC who is a medical specialist so this tells you he will be getting the best of the best treatment. They fought for four years to keep his bladder before his doctor finally said the bladder had to go.

I started out with one main tumor and multiple superficial tumours. Second BCG showed 4 tumors. All non-invasive but went high grade in June (4th scope). Doctor still plans to continue with scopes and BCG but more frequent to stay on top of this. No talk about bladder removal – yet. I often wonder if it would be different if I was with a different uro. Currently, there is one uro office in Saskatoon that serves most of Saskatchewan. I have been through four of the doctors to date (they book me with whoever can do the surgery the soonest vs when my main doctor is available) and all have followed the same treatment plan.

Don’t be concerned about insulting your doctor. This is your health and your bladder and your future. Not the doctor’s. At least ask a lot of questions so that you are okay with the doctor’s decision and it is not a doctor wanting to take an easy way out. Remember, not all doctors are created equal.

In the end, if the bladder has to go, it has to go. Better to lose a bladder than your life. I am sure your wife would agree. So take a deep breath, hug your wife like you really, really mean it, shed a few tears, appreciate every day and be glad the BC has been caught. Better to be fighting the BC than those little buggers (cancer cells) having a free for all in your bladder.

Take care

[DDep]

Hello Gene,

Welcome to the BCC forum.

When I was first TURBT’ed (July 22), my Urologist’s initial visual assessment was that I was at least T1HG and possibly T2. Ultimately the Pathology did not turn out that way.
Because my tumor had a focal High Grade element, I was reTURed on August 25th.
I found out from my Urologist and from reading, that it is not uncommon of High Grade cases to have a residual tumor and for some tumors to recurr at the reTUR.

I have read of cases of bladders with initial T1HG tumors being cured by BCG – some people on this site that are doing rather well. On the other hand there is a very high risk of progression when with T1HG – so some may have an RC within the first year. We are all different and I think that it depends on our specific case following discussion with our medical team. We are dealing with the risk to our lives after all.

I am an Professional Engineer by calling and so I tend to research things before making decisions.

So, FYI, I offer this:

To help decide on a risk situation, I found 3 web sites that help. This data may help to be more informed for further informed discussion with your specialist and/or a discussion on a second opinion.

1) http://blcwebcafe.org/content/view/103/113/lang,english/
– Summarizes things well. I particularly pay attention to the “Guidelines …” at the end of the article.

2) http://blcwebcafe.org/content/view/146/157/
– This site contains EORTC risk tables based on Individual patient data for 2596 stage Ta T1 bladder cancer patients entered in 7 EORTC trials from 1979 to 1989. It does not entirely take into account treatment with BCG.

3) http://www.aeu.es/Cueto.html
– A scoring model for BCG – treated patients that predicts the short- and long-term risks of recurrence and progression has been published by the Club Urológico Español de Tratamiento Oncológico (CUETO) (Spanish Urological Oncology Group). It is based on an analysis of 1,062 patients from four CUETO trials that compared different intravesical BCG treatments
– This calculator is taken from Reference: http://www.abnoba.de/fileadmin/Upload/Germany/DocCheck/Guideline_Non-muscle-Invasive-BC_TaT1_LR1.pdf

As Cheryl said, if the bladder has to go to be cancer free – then so it must. I am just offering some information if you want to discuss things further with your medical team.

HTH (Hope This Helps)

DDep

[Gene]

Thanks to all of you for your responses. It is such a huge help to hear from others in similar situations.
My urologist who did the TURBT referred me to a top surgeon here in Edmonton. He said he would not suggest removing the bladder until he’s 100% certain it is the best route. After he did my cystoscopy on Aug. 31 he informed my wife and I that I’m not a good candidate for BCG and stated that the best option is to remove the bladder due to the considerable amount of tumor. I trust this surgeon and I believe he’s right. I meet him on Wednesday to finalize the decision.
The weird part is I have no symptoms of any kind that even indicate I have cancer, no visible blood in urine for the past 2 months, no pain at all, no sensations during urination and I feel great.

Thanks again everyone and best of luck to all of you in your journey. Let’s keep smiling.
Gene

[Val]

Gene

I am glad you feel comfortable with that surgeon. I would consider getting a second opinion, as some of the others have said on the forum. Getting a second opinion from a top urologist in Toronto (I’m located in Calgary) saved my bladder. I had bladder cancer in 2008 & it returned, after 6 BCG, treatments in 2010. I was like you, the TURBT got rid of the tumor but the cancer was high grade. The original urologist said I had “failed BCG” and wanted to remove my bladder. The second opinion with the Toronto urologist didn’t agree. I am very, very happy to say that after 13 more BCG treatments that I am 5 years cancer-free and my bladder is still with me. I never had anymore reoccurences after the 2010 TURBT when the first urologist wanted to remove my bladder.

I am not saying that your story will be the same as mine. Everyone is different. I’m younger than you. But I would recommend talking to a urologist in a larger centre and see what the results are. If both doctors agree, then you are in the same situation you are in today.

Best of luck!

[DDep]

Gene,

About symptoms … and awareness

In my view, that is one of the insiduous natures of Bladder Cancer (and maybe cancer as a whole).

A year ago, at my annual, I did mention to my doctor that I felt my frequency and urgency of urination was higher (dysuria). I also mentioned that I was getting up at night more often (nocturia). I said the same to my GP again in December 2014 when I was in for another matter. My GP said that it was probably age related – our muscles (i.e. bladder) become less elastic. I later found out that those are among the symptoms of BC. Other than that, I was fit, active, non-smoker (never), non-drinker (rare beer) active guy. On reflection, I wish I had of pressed him for an Ultra-Sound then.

It wasn’t until I wee’ed blood (gross hematuria) on June 5 that the “emergency lights” went off in my head. By then I had a 4.5cm X 3cm tumor – Which was initially spec’ed to be T1HG or even T2 at cystoscopy.

It is my personal opinion that the medical “system” relies too heavily on patients presenting themselves after Gross Hematuria.

That is why this organization, Bladder Cancer Canada is so important. We need better Bladder Cancer awareness by everyone.
Ultimately, In my view, we need to set up a system, much like colon cancer screening, to look for micro-hematuria (non-visible blood in urine). I think there should come a day where at least once a month, at home, we pee into a plastic vial and “dip it” with a test strip, for blood (much like we do at the GPs office). Any indication of test-strip blood should make us seek help. It may turn out not to be cancer. But, blood in the urine is not a normal healthy indication in any case.

Sorry for the sermon … just had to vent. Your comments about little indication, rings a bell with me as well.
When more of this is behind me and my life issues have stabilized, I will look into a micro-hematuria awareness project.

DDep

[Val]

DDep

I agree that we need to get people checked out sooner rather than later. I was very fortunate that my GP found micro-hematuria (non-visible) blood in my urine during a routine check. She had me back for another urine test about 3 months later, there was still non-visible blood. She sent me for an ultra-sound and nothing was detected. Then she sent me to a urologist who found CIS, which is flat bladder cancer so couldn’t be seen on the ultra-sound.

I remember reading a Canadian study published about 2 years ago that less than half the women who presented with blood in their urine were sent onto another specialist. We need to increase awareness of this disease, so that people know the symptoms and can make their doctor look further.

I am so glad our walks are doing so well this month, increasing awareness & funds for this disease are important!

[cheryl9]

Hello everyone

I sure agree on the lack of medical awareness. Almost a year-and-a-half before my BC was found I was in to the clinic with blood in my urine. Gave me antibiotics and sent me home. In once again a couple months later with the same results. Took a resident, yes a student, to sound the alarm. The doctor he was working under actually argued the point with him and insisted that it could not be cancer. He had no basis for this because the doctor didn’t even see me. The doctor ended his tirade with “if you think there is cancer then you order the tests” to the resident. The doctor knew full well that the resident didn’t have any rights to order any tests but probably thought that would bring an end to it. What made the resident go ahead and order the tests is when he did an abdominal exam and I felt pain when he pushed on my bladder. He then didn’t hesitate to order an ultrasound. Then we went from ridiculous to bizarre. Because the resident ordered tests, it was treated like a hot potato for a couple weeks before one of the staff in the x-ray department booked it in and worked around the resident issue by removing the doctor’s name. Then the results sat in no man’s land for several weeks because the resident’s name was removed from the report therefore no one knew where to send the results. Anyway, after that everything moved really fast. My first surgery was even booked as an add on at the end of the day and needed approval from the powers that be.

Looking back, a simple abdominal exam would have brought things to light a lot sooner and why are doctors not doing this effectively when doing annual examinations?

I fully agree that the first step needs to be awareness and then a simple screening process through a urine test and then doctors not assuming “it’s nothing”. This part all starts with doctors being more aware of BC.

There, I have said my piece. Now I will go back to my fundraising!

Take care everyone

[DDep]

Awareness …

Urologists are trained under the following:

“Gross Hematuria is a malignancy unless proven otherwise”

I think there is possibly insufficient awareness in the public and in some areas of the GP level.

I really like this article from the UK.

http://www.fightbladdercancer.co.uk/content/only-top-10-cancer-where-survival-rates-are-falling

It is what I quoted to the local CBC station in order to make them aware of our September 27 awareness walk.

DDep

[KIOWA]

Hi Gene. Yup, like a punch in the face. Or below the waste or something like that. I started early so I could get a lot of practice with BC. Like age 44 or something. Mine was not in the muscle either and as I recall iit did not penetrate the lamina propria. O course they removed the tumor which my sugeon described as “yucky and bloody”. that sounded about right. He dragged it out, beat it and gave it the last rights and that was that. But I had cystos every three months, then six then yearly and he insisted on yearly forever. Good thing too because 18 years later another one of a different type popped up. Or popped in. Took it out, yelled at it, punished it, sent it to it;s room and then had BCG which made me to sick to go more than the original 8 sessions. Came back, and back again, and after 7 more times tried Valstar. then it stayed away. Had second opinions and and for years had 3 moth cystos then 6 months and finally back to yearly. So far the past 4 years have been all clear. Bladder cancer is nothing to mess with. I have been fortunate to avoid removal but had it gotten near the muscle it would have had to go away forever. And who knows, I guess that could happen. But living with some kind of diversion is better than living with and dying of cancer. I wish you the best.

Kiowa

[marysue]

A lot of GP’s aren’t aware of BC and treat it like an infection with antibiotics which delays diagnosis and can make a big difference as to whether someone gets to keep their bladder or not. I was lucky that my doc suspected BC right away and got me in to see a uro pronto. I credit that astuteness for my diagnosis of non-muscle invasive. I hadn’t even heard of nor did I know that you could get cancer in your bladder at that point. Well, like all here I’ve learned differently and it’s been a huge, huge learning curve these past seven years and there is still more to learn.

Yes, it was a kick in the teeth to learn what I had. It was on top of my mother-in-law passing away from lung cancer 4 months previously, my dad was struggling with prostate cancer, my father-in-law had also passed away from complications from prostate cancer surgery. So I felt that cancer was really out to get our family. I have since told it where to go and so far after 2 TURBTs and 21 BCGs I’m going into my 6th year cancer free. IT WILL NOT GET ME!!
Cheryl, kudos to that res having the guts to do what he did! I think there is too much politics in the medical system and patients get caught in the middle!

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