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I’ve just had a first surgery barely 4 weeks after detecting a problem … no pathology reports yet, but already the surgeon wants to go in again in another 4 weeks time.
My head is spinning at how fast this is happening. Do you have a group or anyone I can talk to near Cambridge, Ontario?Hi Ron
Sorry you have been diagnosed with bladder cancer. If you call 866.674.8889 and leave a message someone will contact you.
Many of us have been where you are and would be happy to answer any questions you may have. Your pathology report should be ready, and just ask your doc for a copy.
All the best,
JackHello Ron
I am sorry to read that you may have been diagnosed with Bladder Cancer (BC) after detecting a problem.
My head was spinning from the time I was first diagnosed with BC, the pathology report through to the time a treatment plan was laid out before me.
Some of us call this the “Dark Times”.This Web-Site is a Blessing to be sure!
When your Pathology report is available make sure you AND you Family Doctor (GP) get copies.
About “going in again”:
I had my first TURBT in July 2015. Despite what the Pathology report stated, and the Urologist thought it was “Good news”, He “went-in again” just a few weeks later. I asked, “why?”. He answer was, “It is standard practice now”. In his view, he wanted to be sure he “got it all” and that it lowers the risk of recurrence.
On reflection, I think it was a good thing. Emotionally draining to be sure – But it gives the best chance of recovery.We all endure the “Dark Times”. I found it difficult to sleep. My GP prescribed me some pills to help with that.
My only other suggestions are: Take long walks; Do physical activity; Watch light-hearted movies; Talk to family and friends; Do hobbies or activities that give a sense of accomplishment.
AND
Unless you have training or knowledge in the Medical, Pathological or Pharmacological Sciences do not spend to much time searching for answers on the Internet..I know it is a difficult time right now. … My mother’s words echoed strongly, “Take one day at a time !”
God Bless
DDep
Hello Ron
Been there. Done that. No fun. I had ultrasound results April 17 (mass “appears” to be malignant) being the day before Good Friday, May 1 cysto confirming cancer, May 11 surgery, June 13 started BCG treatments. All this during one of the busiest times of year for my business including the sale and transition to new owners.
I became an expert at spinning for awhile then decided it wasn’t worth it to put all that time and energy into spinning. Once I quit spinning life was so much better.
My best advice: take a deep breath or two or three or four or however may it takes; cry; hug those you love; cry some more; spend time with those you love; cry; then find something to laugh about then you will start the journey of healing.
Do not spend time hanging around the rafters either. Get too many headaches, sore muscles, bumps, bruises and splinters doing that.
Take care
CherylHi Ron:
Welcome to Bladder Cancer Canada but sorry that you have need of us. I can’t add much to what has already been said other than to say that I was in your shoes in 2008. It was a scary time and my mind spun around in circles for ages. Waiting for the diagnosis was one of the most agonizing times of my life.
The second TURBT is becoming a more standard practice and as already mentioned proving to be an effective way of preventing recurrences. It isn’t a 100% guarantee but research is proving that it is effective.
So hang in there, grin and bear it. After you get the diagnosis you will know the road that you are on. We will pray and send positive thoughts that you are superficial low grade which is the best diagnosis a bladder cancer patient can hope for.
P.S. As Cheryl says don’t swing from the rafters….try a golf club or baseball bat instead. Try to keep busy and do some fun things, treat yourself. I did this during surgeries and treatments and still do when I go for my annual cysto check – yes it does get less as time goes on provided you don’t have recurrences…(((((HUGS))))
Hi Ron, like others have said, sorry that you have had to find this website, but so glad you did when you needed us. I hope you did call the number that Jack Moon suggested above. I did, and BCC was, and has been a great help to me in my journey. These early days can be rough, so don’t spend to much time on the what ifs and so on. Wait til you have the facts. Good thing to have things move fast when it comes to your health. Mine moved relatively quickly as well, when I first showed symptoms and moved towards diagnosis back in 2012. Hang in there. Take it a day at a time, one step at a time, and let us know how things go.
GordI’ve just had a first surgery barely 4 weeks after detecting a problem … no pathology reports yet, but already the surgeon wants to go in again in another 4 weeks time.
My head is spinning at how fast this is happening. Do you have a group or anyone I can talk to near Cambridge, Ontario?Hi Ron, I just recently had the same experience however my urologist had me wait 7 weeks but that was more a scheduling issue. The pathology report should take no more that 2 weeks. I chased my family doctor to get them and he had them in a week. My pathology report was scary but because the cancer was caught early I’ve been given a good prognosis. If the surgeon wants to go in again quickly it might be because they want to take samples deeper in your bladder wall. That being said they should have your pathology report in order to make that decision.
In Calgary I’ve been very fortunate because of my surgeon/family doctor and his team to get me through this, I am still waiting for further treatment but I can tell you with some certainty if they want you in again it’s a good sign.Kind regards, Mike
Hi Ron, I can totally relate to how your head is spinning as I felt the same way just a few months ago. It’s actually a good thing things are moving fast because the waiting was the hardest part for me. Feel free to private message me if you need a friend to chat with.
Peter
Hi everyone, & thanks SO MUCH for the support. This is a test, because I wrote a LONG update in the middle of the night last night … couldn’t sleep re: Doc appointment this morning … but it didn’t post & got lost. So let’s see if this works before I wear out my fingers doing a re-typing job.
OK, that worked, so it WAS me being sleepy in the middle of the night. Once again, thank you SO MUCH for your replies. You are a very kind, & caring, & supportive bunch!
So here’s my update if you have time to read it. I’ve now had my second TURBT (2nd one 3 weeks after the first). Just waiting to head to the surgeon in a few minutes. I’m a slow typist, so I may not get this all down before I have to leave, so it will probably be a 2-phase posting.
After the first surgery, the doctor called it Non-Muscle-Invasive, but Aggressive and High Grade. To me those sound weirdly incongruous … non-invasive sounds like nothing much to worry about; aggressive and high-grade sounds completely the opposite. I think he’s calling it aggressive because of how much bigger it had grown in the 2 weeks between the first scope & the first TURBT?
Second TURBT (3 weeks after the first) showed no new tumour (GOOD!), but a lot of scarring. as a matter of fact, he couldn’t even find one ureter because of the scars & considered putting in a stent (sp?), but ended up not doing that. The appointment in a few minutes is follow-up to that surgery, & to get a schedule for an initial round of BCG treatments. I have HUGE concerns about the BCG now because I made the mistake of visiting Doctor Google during what felt like an interminable wait between appointments.
Before I address those BCG concerns, may I ask: Has anyone experienced a pretty horrible pain when peeing, that I can only describe as a “clenching” sensation? I’ve never had a very large capacity (car trips have been a torment for most of my life), and now its vastly worse. I’m fine, then a sudden & urgent need to go comes up, almost nothing comes out, but I get this clenching at the end (sorry, but I just don’t have any other words to describe it yet).
As to the BCG …
1. How much of a “walking bio-hazard” am I going to be while undergoing this?
2. Is the catheter used smaller than the one for the TURBT? Because that felt like it ripped me up inside & did a lot of damage.
3. How do we know if the BCG is working?… Have to get in the car now, but SO MANY more questions??????????????
Hi Ron
I started with non-muscle invasive bladder cancer and BCG treatments, but things changed and I had an RC last year. All things considered, everything is going very well for me at present. My comments are based on my personal experience, I’m not a doctor, so it’s always a good idea to discuss all of your issues with your urologist.
Non-muscle invasive (NMIBC) is much better than muscle invasive. It means that the cancer only got as far as the epithelial cells and the connective tissue in your bladder. It didn’t punch through to the muscle layer. Treatment is typically BCG rather than an RC where your bladder is removed.
The pathologist determines whether it is an aggressive cancer or not by examining the types of cells under the microscope.I had urination pain after my TURBs, but not continuing like you described. It sounds like the bladder hasn’t healed yet. Good one to discuss with your urologist.
BCG is a very standard treatment and has been used for many years. It is a weakened tuberculosis bacteria that is instilled into your bladder which causes some irritation and encourages your immune system to attack the cancer cells. The typical precaution is to bleach the toilet bowl after urinating until it gets flushed out. I wouldn’t be overly concerned about being a “bio-hazard”.
The catheter doesn’t normally cause damage. The tube used in your cystoscopy was larger.
You can’t really tell if the BCG is working, except by regular monitoring with a cystoscope. The recurrence rate is high, though – 70%. If it comes back, then they normally do another TURB. The BCG can cause some side effects, but everyone is different.
Hope your urologist visit goes well and he can answer your questions. You’ll undoubtedly have more afterwards!
Cheers
Stephen
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