So confused

[Kathy H]

Hello,

In December, I had a pelvic ultrasound done to look for some female issues, and a mass was noticed at or on my bladder.  At first, my GPS initial thought was that it was a fibroid pushing on the wall of my bladder.  He did mention the concern and possibility of it being bladder cancer, but I showed no symptoms and my urine tested clean.  I also saw a Gynaecologist and had a biopsy done, and yet another urine test, which both came back clean.  So, my next step was a cystoscopy, which I had done yesterday.

As soon as the camera was inserted, the urologist said, “Oh, there it is”, and asked for the camera.  He also mentioned that it was in a strange location, but did not elaborate.  After that, all I heard was the word cancer, and surgery, and that I would be getting to know his nurses well because they need to keep an eye on it to make sure it doesn’t return.  I  honestly went in thinking they would find nothing,  and that I would be told it was simply a fibroid that would take care of itself.  I have an appointment this week with my GP, but I don’t even know where to begin in asking questions.

I realize that medical advice is not given here, but when I asked him if it could have anything to do with my recently worsening incontinence issues, he just said it could possibly, due to its location.   I’m 46 and have 3 grown children.  I expected the odd issue with a sneeze or laugh here and there, but it has gotten terrible in the last couple of months, and I don’t know if the deterioration of the muscle is part of this, or just me not doing enough to ensuring the strength (kègels).  I should note that it was very clear to me that I was the last patient of the day and I was in and out of the room in a matter of 15 minutes or so.

I’m terrified.  I don’t know what’s happening or what to expect.  Any help would be appreciated .  I apologize if I’m rambling.  Thank you

[Jack Moon]

Hi Kathy H
Welcome to our family, I wish you did not have to be with us. We have all been in your shoes and were confused also in the beginning. I found that as soon as the Urologist said you have bladder cancer during the cystocopy, I really never remembered anything else he has said other than surgery. So your current feelings are no different than many of us had after the cystocopy. Confused, scared, upset, and living in the unknown.
In my case, I met with my family doctor who explained to me the next steps, he is also a personal friend so I could be completely open with him and I did feel much better after I left his office.
So the next step for you will be surgery to remove the tumor(s) which is called a TURBT. Then you will wait 3-10 days for the pathology report from the lab, which will indicate whether you do have bladder cancer, if you do, the type of bladder, the depth of the tumor(s) known as stage and the grade of the tumor(s).
Insure you and your family doctor receive a copy of this report. Based on the findings will depend on the treatments you will receive if any. You should ask the Urologist to copy your family doctor and all reports and tests. In my case that sped up the waiting and unknown process as my family doctor’s office would alert me when any reports or test results had been received.
The hardest part of this process I found was the waiting time for reports and of course the unknown.
My recommendation is to try and stay busy and most of all stay positive. Be very careful what you read on the internet and social media as it may not apply to your situation, and try not to get ahead of yourself.
I wish you the very best and do not hesitate in asking us survivor’s your questions.
Jack

[marysue]

Hi Kathy:

Welcome to Bladder Cancer Canada but wish that you didn’t have to be here.  I ditto what Jack says.

I had a hysterectomy in 2002 due to a large fibroid, 6 years before being diagnosed with bladder cancer.  I had mild leakage issues then and then post op was good until 2008.  I had blood in my urine in June 2008 which sent me running to my GP. A few months prior to the bleed out I found that I would leak unexpectedly.  I thought that it was part of the onset of menopause since I was now 50 and experiencing hot flashes and night sweats.

I believe that the size and location of bladder tumours could affect the function.  I was officially diagnosed with bladder cancer in the fall of 2008 after my TURBT surgery.  Having the tumours removed did help with incontinence but I also resumed doing kegels and took up yoga. Both strengthened my body overall and even though I still have the occasional issue today it is much improved. I now only have mild leakage issues if I sit for long periods of time and don’t exercise and/or get constipated.

I too, experienced a shutting down of my mind when I heard the word, “cancer”.  My mind went into this weird state of fogginess and that made it difficult to concentrate and understand what I was being told.  I found that my mind was much like a hamster on a wheel, spinning in circles.  Yoga did help calm my mind as did doing things like sewing.  I found activities with repetitive actions helped shut the hamster wheel down.

Cystoscopy exams are generally really quick and don’t allow much time for questions.  If I have questions I write them down on a sheet of paper and take it with me to my cysto or office appointment and alert the nurse that I have questions.  It seems to help.  Staff take my sheet and attach it to my file and bring it to my doctor’s attention before he even comes in the exam room. He gets into the questions before he does the exam.  I also started a journal of sorts to keep track of appointments, surgeries and treatments, test results etc.  It also was a place to make note of questions and space to have a “woe is me” time and get my thoughts and feelings down on paper.

I agree with Jack in stating that don’t go on the Internet too much to do research.  Bladder Cancer Canada has nice patient booklets that can be downloaded for free or you can contact them and request a hard copy if you prefer.

I hope that my comments help.  Stay in touch and let us know how you are and ask questions as they come up.  No question is a dumb question.  We are here for you.  (((((HUGS))))))

[Kathy H]

Thank you both so much for your advice and kind words.  I am definitely going to listen, and try to keep myself busy.  I have already planned to start taking or doing yoga, and I have been consciously making efforts to practice kegels as often as I can.

I have hopes that this was caught early enough, especially since I have not shown any blood in my urine, and my incontinence issues have not really been a huge issue up until recently. As far as I know I only have the one tumour, but I don’t know the size of it.  I am seeing my doctor this week, and hope to get more answers from him.

I truly appreciate you both taking the time to answer me, I’m still in disbelief and can’t even believe I’m having to be here at all.

[mcmaster_hb]

Hi Kathy,

Jack and Marysue have done a great job answering your questions.  My cancer was found by accident as well, no symptoms and there are still days that the last 6 months feel like a dream.

Rest assured, your urologist will take good care of you.  Bladder cancer may really suck at times but it’s treatable!

Jack is right though, STAY OFF THE INTERNET!  Take one step at a time and don’t worry about what might happen next, just focus on one day at a time.

We’ll be here to support you in your journey and cheer you on!!!
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[Kathy H]

Thank you all for your help.

I saw my GP on the 5th, and he has given me positive news.  I apparently do only have the one tumor, and it is low-grade according to the urologist report.  The report indicated a surgery date will be made as soon as possible, I’m hoping to hear from them soon.  Does anyone have any insight as to how long a person typically will have to wait for surgery?  I’m told I will be going to the University of Alberta hospital, but that’s all I know for now.

 

[Jack Moon]

Hi Kathy
The wait time for surgery depends on the the available time of the Urologist and the hospital. Typical wait time seems to be from 2 to 6 weeks for a Turbt.
Not sure how your Urologist can know the grade of the tumor unless he/she took a biopsy during your cystocopy.
All the best,
Jack

[mcmaster_hb]

Hi Kathy,
Jack is right, depends on the hospital and Dr.  During my cystoscopy the Urologist showed me the tumour and  I had the TURBT two days later.  I didn’t know the extent of my issues until pathology came back 10 days after my TURBT.
I hope you don’t have to wait too long but I am happy to hear that it is low grade, that’s something to hold on to!

Heather

• This reply was modified 6 years, 11 months ago by Jack Moon.

[Kathy H]

Well, that’s about the only thing that’s keeping me relatively sane at this point, is “knowing” that it’s considered low grade.  Otherwise, it’s been nearly 5 weeks without any information as to when the surgery will be.

At least if our weather holds up, I will be able to keep myself occupied in my flowerbeds…

[Audrey]

Very happy to hear yours in low grade. Mine was high grade, had the surgery to remove tumour in December 2017 and just finished 6 BCG treatments. All is well with me. Hope this is encouraging and hopeful for you. All the best.

[Kathy H]

11 weeks later and I finally had my procedure done June 8th.  They’ve sent me home with a catheter and prescriptions for T3 and Senokot, which I actually wasn’t expecting, based on the belief that this was a small tumour.  So now it’s after 1 am and I’m unable to get comfortable enough to sleep.

I only very briefly saw my surgeon, once just before my surgery, and then very quickly in recovery.  I don’t know anything about the size, etc, or how long to expect to wait for the pathology results.  I see my family doctor this Wednesday and go back to the surgeon September 13th, for what I assume will be another cystoscopy.

I feel like I could deal with this much better if I knew what was actually going on

 

[Jack Moon]

Hi Kathy

Hopefully your family doctor will have your pathology report on Wednesday. If he does insure to get a copy. If he has not, ask him/her to call the lab and order the report.
Keep us posted, we know what it is like to wait for results. Stay positive!
All the best,
Jack

[marysue]

Hi Kathy:

I have heard a lot of patients say what you have in that they don’t know what is going on.  Urologists seem to keep everyone on a need to know basis which isn’t helpful when you need to know the whole picture and what to expect in terms of the next steps.  I experienced this frustration as well and finally took the bull by the horns and asked for an office appointment with my uro so I could get questions answered.  My first uro was not the best at this but my current guy is much better.  My suggestion is that if you are concerned about stuff call his office and ask for an appointment.  Jack is right in that your GP should have a copy of the pathology results.  That was how I found out my results.  I was told post op that it would take 10-14 days for the results to be in and to call the uro’s office which I did after 10 days.  His snooty receptionist told me that the results weren’t in.  I happened to need to see my GP at the same time for another issue and he had the report right there and had received it a couple of days earlier.  He was able to give me the low down but I needed to speak to my uro about next steps.  Needless to say when I got home I had another conversation with the receptionist and she did get my uro to call me at the end of the day.  I had to bite my tongue and not get huffy with her for what I perceived as her not even bothering to check to see if my results were in. I realized if I ticked her off she may have gotten uncooperative.  It is unfortunate but a lot of the time we have to learn to be a bit of a brat and start advocating for ourselves.  We all have a right to know.  Best wishes going forward.  ((((((HUGS)))))

[Kathy H]

Hi all,

I was mistaken on my appointment date, so I didn’t see my family doctor until June 21st.  I had gone to him on the 18th, due to feeling like I had developed a bladder infection from the catheter, but he didn’t yet have the results from my surgery.  On the 21st when I went back, he gave me the news that the tumour tested positive for cancer, but that it was low-grade, non-muscle invasive.  They removed everything, and I have another appointment set for Sept 13th with the urologist in Edmonton.  I assume it will be for a cystoscopy, and then I hope to get some more information as to how often and how frequently I will have to return for them.

I feel as though I can finally breathe, and it’s still very surreal to me that I even had cancer in the first place.  I am truly grateful for the outcome, my friends and family, and for finding you all on here in order to help me through it.  Fingers crossed!!

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