TURBT Done…Scared As I Wait For My Results

[abons]

This is the first time that I have ever posted on a forum like this…I’m a very private person.  Since late October  I have been surfing this site reading everyone’s posts and it seems like this is such a supportive group.

Here goes…I’m a 38 year old woman who has suffered from UTI’s for the past 10 years.  10 years ago I had my first gross hematuria which was scary to say the least.  I saw a Urologist at that time and had a cystoscopy and everything was normal.  I was diagnosed with Interstitial Cystitis and really had no follow up with the previous Urologist.  Over the course of these 10 years, I have felt like I have a permanent UTI.  There have been several times over the past 10 years where I have presented with a gross hematuria which usually lasts one day.   I’ll go to the nearest Walk-In Clinic to get antibiotics and the symptoms  go away.

This past September, I had a gross hematuria and was passing relatively small blood clots.  However, rather than lasting one day, this lasted for several days and never really went away…I passed blood and blood clots the night before my TURBT.

I finally made an appointment with my Family Doctor and had a pelvic ultrasound on Saturday, October 26.  On Monday, October 28, my family doctor called me bright and early to advise that the ultrasound showed a mass in my bladder and I needed to be seen by a Urologist ASAP.

I had gone to the ER the previous week due to lower back pain which has now subsided.  When I walked into the ER, I came face to face with the Bladder Cancer See Red Brochure and took a copy with me which has been a god-send.   A CT Scan was done at this time and it showed a small kidney stone in my right kidney which the ER Doctor didn’t think was causing the lower back pain  or the bleeding.  A Referral was also made with a Urologist who had booked my cystoscopy on November 8.  I visited the Urologist prior to the pelvic ultrasound and he also ordered a Urine Cytology and a CT Scan with Contrast. However, due to the mass that was found in the ultrasound, the cystoscopy was moved up to Friday, November 1.

When the cystoscopy took place, there was a definite growth.  I was scheduled for a TURBT on Tuesday, November 19.  I have never had surgery before so I was anxious to say the least.  I thought I would be one of the rare people who was allergic to anesthetic and wouldn’t wake up from the surgery.  The surgery went well (I wasn’t allergic!!) and I was sent home the same day with a catheter.  I went back to the hospital the next day to have the catheter removed by my Urologist.  Since the catheter was removed, I have not peed blood or passed any clots.  I have no pain when peeing….I’m hoping that these are good signs.

The Urologist has always been up-front with me and said that this could be a low grade cancer or a polyp.  However, after I saw the Urologist on Wednesday, he said that based on the light that was used during the TURBT and what he saw, he is now leaning towards this being a cancer.   He said that it was a small growth and he thinks we caught it in time and he would be shocked if it reached my bladder wall.  I have a copy of the Operative Report and the growth is described as a “thin narrow stalk which measures about 3 cm in height”  To me 3 cm seems to be on the tall side but then again I’m barely 5 feet tall LOL!!

I am now a bundle of nerves waiting for my pathology results.  I can’t keep myself from going to the dark places thinking that all of my previous UTI’s  have caused damage to my bladder and that this is now in my bladder wall.

The Urine Cytology that was done showed “the differential diagnosis includes a low-grade urothelial papillary neoplasm (low-grade urothelial carcinoma) and less likely a nephrogenic adenoma.  There is no evidence of high-grade urothelial carcinoma in this sample”.  Based on the readings I have done, I know that a Urine Cytology is not always accurate.

My CT Scan with Contrast came back fine.  It also confirmed the mass in my bladder.  It also shows that I have a fatty liver which my family doctor said is diet related.  I also have a cyst in my ovary which my family doctor would like to be followed up.

The Urologist thinks that the pathology results should be in by late next week.  Until then, I am a nervous wreck thinking of the worst.  I’m trying to keep myself occupied but its hard.

I apologize for the long post.  I’m hoping that some of you can read my post and put my mind at ease.

Thank-you 🙂

 

 

 

 

 

[Jack Moon]

Hi abons

Sorry you have had so many Uti’s over the past few years, as I did prior to being diagnosed with low grade non-invasive bladder cancer.

I was diagnosed with low/mid grade bladder cancer in 2005 and have been cancer free since 2007. I did have a couple of small recurrences along the way and treatments (BCG) to stop the cancer.

Waiting for lab reports is one of the toughest ordeals we all have had to live through. Our mind wonders all over the map and usually to the worst places and the worst that may happen. True, the cytology tests are not 100% accurate but a good sign in your case was that no high grade cancer appeared in the results. Cytology is more accurate at picking up high grade than low grade cancer. Mine showed no cancer which was not the case.

I was fortunate in that the longest I have ever waited for lab reports is 3 days, as my family doctor was copied all all test reports, so his nurse always would call me when the report was available, I would meet with the doc and review the report together. So when I met with the Urologist I knew what to expect.

I always recommend to patients to have their family doc copied on all lab reports. Takes a few days or in some cases weeks to avoid the waiting which I call nerve racking guessing time.

So I understand exactly what you are going through and so do all of our members. Things I tried during this time was keep busy, avoided several internet sites, it helped a bit but I still worried. I found trying to sleep was the worst time for me.

So try to hang in there, have positive thoughts, ask questions here on the forum, we are all a big family who are good listeners.

I truly wish I could be more help.

All the very best,

Jack

[Nightingale]

Hello abons,

I’m going to tell you like many others to not worry, which is easier said than done, but please do try and think of positive things such as a clear bladder lining.

I want to ask you about this comment that I copied from your summary above – “However, after I saw the Urologist on Wednesday, he said that based on the light that was used during the TURBT and what he saw, he is now leaning towards this being a cancer.”

Do you recall if the Urologist/surgeon used the term Blue Light Cystoscopy or BLC?  If ‘yes’, then you’ll be glad to know that you’ve received treatment using a newer technology that helps the surgeon see the tumours in the Bladder much better and reduces the possibility of missing them.  The other good news about BLC is that it is specifically designed to detect tumours on the lining of the Bladder rather than ones that have penetrated the muscle layer.  For this reason I am hopeful that yours can be treated and with any luck you’ll be good to go after the Tumour is removed.

I am a 10 year survivor and my Cancer came back three times.  Each time I was able to catch it early and have it removed.  In my case the Surgeon was using White Light Technology which is much more difficult to see the Cancer.

I am sending you positive thoughts and look forward to seeing your update.

My best,

[abons]

Hello Jack Moon,

Thank-you for taking the time to respond to my post and sharing about your own personal experience.

I was so worried about having my TURBT done that I didn’t even think about having to wait for the results which now seems so much more worse than the surgery/procedure itself.

I did go to see my Family Doctor following the surgery and she was kind enough to give me a copy of the Operative Report.  She also said that she would contact me when she gets the results so hopefully her phone call comes before my visit to the Urologist on Friday.

I’m trying to keep positive during this time and also keep myself by staying busy with work.  It’s hard because I can’t stop my mind from wondering to the worst places.  It scares me because both my Family Doctor and Urologist have said that bladder cancer is not typical in a 38 year old woman which makes me think that I will have a worse outcome.

I have to try and convince myself that this was caught early and its treatable.

I did reach out to Bladder Cancer Canada following my ultrasound and was put in touch with a peer support counselor who has been wonderful at talking me off the ledge when my mind goes to the dark places.  I also heard that there is a Support Group meeting in Toronto this coming Monday which I will try to attend.

This organization that you started is wonderful.  Being able to talk about my recent experience with others who have gone through it is very helpful.

Thank-you once again 🙂

abons

[abons]

Hello Nightingale,

Thank-you for taking the time to respond to my post and sharing about your own personal experience.

I have read about the Blue Light Cystoscopy but my Urologist didn’t confirm that this was used….I’m not sure if it’s used at the Hospital where I had my TURBT done.

The Urologist has always been up front with me.  He never brushed me off and scheduled an appointment at his office within 4 days of my initial ER visit.  At his office he said its not normal for anyone to pee blood or pass blood clots let alone a 38 year old woman.  When I had my cystoscopy done he said that the growth that was seen on the cystoscopy could be a low grade cancer or a polyp.  I guess he was prepping me for the worst should it turn out to be cancer rather than making me think it was simply a polyp.

Following the TURBT, he simply said that based on the light that was used and what he saw he is now leaning towards this being more of a cancer than a polyp.  He said that we are going to be good friends as I will now require regular cystoscopies every three months for the next year to make sure there are no further growths.

I guess my question is, if the Urologist keeps telling me that he thinks that this is a low grade cancer and he would be shocked if it reached the bladder wall, can I take re-assurance from that?  I know that the pathology is what will be 100% accurate but  I’m hoping that the Urologist has seen enough of these cases that he wouldn’t give me false hope.

Thank-you for your positive thoughts and I will definitely update you when I receive the pathology results which I hope is sooner rather than later.

Thank-you once again 🙂

abons

[marysue]

Hi abons:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I always say that this is the club that no one wishes to belong to but here we are.  I think that you have done all the right things as far as your journey has taken you so far.

As the others have mentioned and you have discovered waiting for the pathology results is really tough and yes, our minds tend to dwell on the negative.  The fact that your GP is looped in is a good thing and hopefully you will hear from him/her as well.

I was told that my results would take 10-14 days to come in and around the 10 day mark I was at my GP’s office for another matter.  He told me my results were in and asked if I had heard from my uro.  I told him no, and wanted to know what it said.  He gave me the run down which in my case was non-muscle invasive high grade – so translated into English means that it was superficial on the inside of the bladder wall which was the good news but the bad news was that the cancer was aggressive.  After I got that news I called my uro’s office when I got home and asked his receptionist to call me or give me an office appointment ASAP as I wanted to know what the next step was.  My uro called me when he was done with his patients for the day and in my case it was BCG treatments with regular 3 month cysto checks that were the follow up.

 

My GP did tell me that the majority of bladder tumours are malignant but the majority of those are early stage.  I know that it is hard to do, but keep busy to try to keep your mind off it as best you can and hopefully you will know soon what the exact diagnosis is.  The good thing after the TURBT is that the tumour(s) are removed and that does slow things down some in terms of any remaining cancer spreading.

I too, found that once my catheter was removed the next morning I didn’t see any visible blood in my urine.  I did pass a small amount with a small clot a few days later but that was it.  I have learned the best way to heal from a TURBT is to drink lots of water, rest as needed and avoid heavy lifting.  Going for short frequent walks is helpful also.  The surgical wound is cauterized after the tumour is removed which limits the post surgical bleeding in the majority of people.  But as mentioned it is important to limit heavy lifting for 4-6 weeks to allow time for the wound to heal over.

I’m sure that you will find the Toronto support group helpful.  Talking to others really helps you feel not alone.  Toronto also has a Wellspring Cancer Support Centre which offers free programs to cancer patients and their loved ones.  I recommend checking that out also.

All the best and please let us know how it goes.  ((((HUGS))))

[abons]

Hello marysue

Thank-you for taking the time to respond to my post and sharing about your own personal experience.

It’s currently been 10 days since my TURBT and I am still waiting for my results.  I had an Appointment scheduled for November 29 but the Urologist said to call his office to make sure they have the results.  I spoke to the office today and unfortunately, they still haven’t received the report from Pathology so I have to follow up with them in the morning.  If they don’t receive the results, I will have to wait until next week to hopefully get some answers.

It’s been absolutely nerve wracking waiting.  I have been trying to keep myself busy with work but there are times where my mind wanders and I break down thinking of the worst-case scenarios.  Every pain I now have is magnified and I can’t stop of thinking of the worst possible things.  My family, friends and co-workers have been supportive which I appreciate but sometimes I feel like they don’t understand what I’m going through.

The Toronto Bladder Support Group actually meets at the Wellspring Cancer Support Centre.  I went to the meeting on Monday night and it helped to talk to some of the participants even though they were all men who were much older than me.

Since having my TURBT, I haven’t seen any visible blood in my urine or passed any clots which unfortunately became part of my normal since September. I hope that these are good signs.

I know I will need regular cystoscopies following this.  My fear is that I am going to be living on pins and needles every time a cysto is done thinking that there will be re-growths.

I will keep you posted when I get my results.  Thank-you for the ((((HUGS))))…they have been coming in handy during this anxious time.

Thank-you 🙂

abons

[marysue]

Hi abons:

You are welcome for the ((((HUGS)))).  I hope that you have heard about your results by now and that you have answers.  If you have questions don’t hesitate to post.  All the best.  (((((HUGS))))) again.

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