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Hello All,
Having endured 12 hours of high anxiety after my call with my family doc yesterday, I’m a bit relieved to find this support forum!
A bit about me.
I’m Trev, a 48 y/o male, Toronto-based, in good physical condition. I have no diabetes, no high BP, my cholesterol and weight are in control, etc.
It began when my annual blood report came in yesterday.
Doc called to say it’s Year 2 where the report indicates Hematuria (traces of blood in the urine). The bleeding is microscopic (my urine appears clear) and there’s no pain whatsoever. Ironically, this has him worried more.
Some context here: my eFGR (kidney function) = 68. No surprise here; I was diagnozed with low and slowly dipping kidney function since 2010.
Why do I keep imagining it’s cancer?
The doc wants me to do, I believe, a cystography, to rule out bladder cancer. He’s also sending me to a nephrologist so they can come up with a kidney plan.
I’m tense! And the fact that there’s a possible 2-month waiting for the tests isn’t helping.
Why does the worst-case scenario (bladder cancer) keep flooding my mind? What if the cancer has spread? I don’t mind my life ending, really, but the trauma it would cause to my loved ones is distressing even to think!
I just wish to vent. I’ve just discovered this forum, so thank you just for listening!
– Trev
TrevG
Was just informed that my Cystoscopy is scheduled for March 22, 2021.
In the referral form, my family doc wrote “not urgent”for STATUS.
In REASON FOR CONSULTATION he wrote “Hematuria. Will benefit from cystoscopy. No pain. Had blood in urine multiple times.”
I have gone through other posts here, and the advice is “don’t jump to conclusions yet and keep positive”, so I am going to try follow that.
I will provide updates. The very act of sharing things here is therapeutic.
Thank you.
TrevG
Hi TrevG
We have all be at the place you are, so we know the worrying. All I can recommend at this point is stay positive, stay busy, and use this forum to vent. There is a very good possibility there is no cancer. Blood in the urine can be caused by may different things.
Your family doc could have your urine tested (cytology) and an ultrasound prior to the appointment, mine did, but since your cystocopy is already scheduled maybe he feels it is not necessary.
When bladder cancer is caught early, it can be easily treated and in many cases no treatments other than removal of the tumor(s).
So hang in there and know you have many peers on this forum to support you and try to answer any questions you may have.
All the best,
Jack
Today, I feel a lot better.
For so many reasons which include going through discussions and the comments of various survivors and contributors here.
I appreciate how some people here have injected humour into their posts, in addition to words of comfort. I even laughed a bit! (I felt the angst of those with darker experiences, as well.)
That was the opposite of what I went through yesterday mid-morning: I wept fearing the worst.
Thanks for helping me regroup, stay positive and focus on everyday tasks.
Yes, fear of the ‘C’ word is still present at the back of my mind, but at least it’s not eating up my waking moments!
There’s nothing I can do but take care of myself until my cystoscopy on Mar 22, anyways.
TrevG
Hi TrevG:
Boy, can I relate to your mental anxiety. When I was waiting for my first cystoscopy exam, I thought the date would never arrive but it did. My mind spun in all directions. As Jack says, keep busy to try to take your mind off it. The exam will show any tumours if they are there and then your doctor will tell you how things will proceed.
The nephrologist will be helpful in diagnosing anything going with your kidneys. As mentioned, there are many reasons for blood in the urine. It sounds like your doctor has a plan underway to get you checked out. When you have more than one issue with the urinary tract it is a good idea to have the whole system checked out.
Fear and frustration are understandable when we first discover there is a cancer potential. The shock and fear of the unknown, the waiting and wondering and it is human nature for our minds to go down those deep dark rabbit holes. A lot of questions whirl through our minds – Why me? Why now? What will happen? Waiting for surgery, tests, results, treatments etc. is very very hard. We want it all done and over with yesterday. We hear you. I hear you.
One thing you may or may not have heard already – I strongly recommend staying off the internet as tempting as that may be. If you start searching for answers there before you have any results you may read a lot of information that does not pertain to you and that will make things worse in your mind. There is a lot of good information here under the links of the site should you need it. You can also find out from here reputable sites to visit should you need to later.
As you go along in this journey, make note of any questions to ask your doctor and then note any answers. It will help keep the information straight. It is very easy to mix things up when we are stressed out. Many of us started medical journals for this purpose. For me, it gave me a bit of self control because I also noted how I was feeling and why. If you need guidance with what questions to ask let us know. People here are very astute and will be able to make some good suggestions.
You can also post questions on this site to ask for input from others. We are not doctors and can’t diagnose or recommend treatments but we can share our experiences. That alone as you have already discovered is worth its weight in gold and then some. As the saying goes, “It takes one to know one.”
Vent all you want. We understand and have been where you are now. Please keep us in the loop. Best of luck on March 22. (((HUGS)))
I really appreciate your response, MarySue! Yes, I’m restricting my surfing to this site only. I have other health and fitness goals which I’d rather focus on.
To ensure that both my partner and I remain distracted over the weekend (we have no children), I’ve self-invited myself to my good friend’s place.
I think it’s during such times that we really understand who it is in our lives that truly matter to us.
I’ll definitely post here some other questions I have.
Thank you so much for the work you and others do here in radiating hope.
TrevG
Hello All,
I hope your weekend is a good one. My questions can wait, but if and when any of you can advise, I’d be so thankful.
Question 1
Have you found it worthwhile to call your urologist and inform them that you’d be ready to come in for cystoscopy in case someone else cancels?I have my cystoscopy scheduled on March 22, but would like to bring it forward.
Caveat: On his requisition form, my family doc wrote “Not Urgent: Will benefit from a cystoscopy” for STATUS.
Question 2
Given the covid restrictions, are we allowed to bring a person for support?I’m also wondering if any of you have asked for your support person to be allowed into the cystoscopy room with you? I understand this may sound weird given the intimate nature of the procedure, but perhaps my next question explains why I ask.
Question 3
What can I expect from the way the cystoscopy result js delivered?
During cystoscopy, I imagine the urologist giving an ongoing commentary about what they’re seeing on screen.
So is that how I’m going to learn “the news?”
I’m thinking it might be weird for me to hear them say “oh my, there’s a tumour!” while I’m flat on my back and hooked to a machine.
Question 4
I’m wondering if my family doc acted irresponsibly when he first observed microscopic hematuria in 2020, and did not advise me a cystoscopy immediately?Context: My 2021 report says “borderline hematuria”. And while I don’t have my 2020 report, the doc did inform me that it’s the second year the micro hematuria has appeared.
He waited for a year, and I am beginning to think that may be irresponsible.
Thank you so much in advance.
TrevG
Hi TrevG
Question 1
Yes you could call the Urologist’s office, I have once and was granted an earlier appointment.
Question 2
You would need to contact your Urologist’s office and ask that question.
Question 3
You will remove your pants and underwear. You will be given 2 gowns to wear. You will then pee in a bottle for your urine to be tested. Your private area will be numbed, with the gel inserted. A catheter will be inserted and the Doc will insert the probe with a light to look around your bladder. What the doc sees you see if you wish, as their is a monitor showing the entire procedure. While this is going on my doc is always talking to me usually about the Leafs. Before the doc removes the probe you will know if he saw anything. All done in 2-3 minutes. For the last 13 years my doc says” Good News”. Procedure is now over.
I then go to wash room and clean myself, get dressed and go home. The 1st couple of times you urinate their will be some burning. Usually with-in 2-3 hours I am 100%.
Question 4
Only a doctor can answer that question.
Really hoping you get an All Clear.
All the best,
Jack
Hi Trev
Bladder cancers are mostly for older people, so the odds are in favor of you. In BC, in 2016, 1185 men were diagnosed with bladder cancer. Of 1185 men, only 130 or 11% are 59 years old and younger. The incident rate was 19 out of 100,000 for 59 years old and younger. You are correct that hematuria with no pain is an indication of bladder cancer. But we need to look into detail. American Urology Association had reported 13.2% of patients with gross hematuria were diagnosed with bladder cancer. Only 1% of microhematuria among all ages was diagnosed with bladder cancer in a more recent study. So, statistically speaking, because you being 49 years old with microhematuria, the probability of your hematuria is caused by something other than bladder cancer is 99% and over.
best
Joe, I can’t thank you enough giving me the numbers. It’s a great reaasueance. As you can imagine, there’s a constant battle in my mind, between my irrational fear of the worst, and the rational side which says the possibilities of me having BC are low.
I’m adding your post to my “screenshot” collection so I can read it to shore myself up whenever the tide of anxiety starts coming in.
Thank you.
TrevG
Hi TrevG,
I am one of the moderators in the Forum and wanted to chime in and put your mind at ease. I was 52 yrs old when I got diagnosed with BC. My family doctor recommended me to a urologist after I contacted him to tell him that I had taken part in a 5 kilometre race and had a tremendous urge to pee. I told him my pee was a stream of blood no clear liquid. This was in the June/July timeframe and I remember it being a hot summer day during the race.
As you can imagine, I was scared like hell! Interestingly though I remember seeing blood clots that had started 6 to 7 months earlier, during one of my training runs in Florida. Again, it was very warm and I said to myself I better report this when I get home. Based on my description, my doctor did not immediately send me to the urologist, and this was in the March/April timeframe. He said keep an eye on my urine and to let him know if I felt any other discomfort, which I did not. Then the race happened!
I was booked to see the urologist within a week and a half, and remember laying on my back staring up at the beautiful image on the ceiling above my head and talking with the Urologist. Before I knew it (seconds), the scope was in and I was looking at the inside of my bladder. I do recall him saying you’ll feel a pinch as the scope goes past your prostate. He immediately pointed out the cancer, which to me looked like tiny sugar crystals. There was no blood.
A coupe of weeks later I went into see my urologist who advised my wife and I that I had cancer, BUT, the good news was that I had caught it very very early. It was low grade and on the lining and it could be scrapped out.
Long story short, after 3 reoccurance and regular checkups, I am now coming up on 12 years of being cancer free.
Incidentally, I have always been into physical fitness, running, swimming and cycling, and today at 64 yrs I am still very active. Other than the occasional cigars on the golf course, I have not been a smoker.
Given your age and the fact that your doctor did not hit the panic button (similar to mine) when you first told him, I’m guessing and hoping you’ll be ok.
As Jack indicated above, be positive (easier said than done) I realise, but use positive visualisation. It helps!
Thank you for sharing your situation and please keep us posted on your outcome.
My best,
Hello Nightingale,
Thank you so much for sharing your story. I have nothing but admiration for the battle you, and many others here, have waged and thrived to tell the tale.
I’m hoping for the best possible outcome, and am taking care of my physical and mental health as I progress to March 22, the day of the cystoscopy.
Wishing you a great rest of the weekend! 🙂
TrevG
Hello All – hope your weekend was good.
Today, I called up my urologist’s office to find out if they could bump up my cystoscopy to an earlier date. They said they couldn’t, so there it is – my cystoscopy appointment is set for March 22.
Also, found out the urologist’s name. It is Dr. Kirk Lo, at Mt Sinai Hospital, Toronto.
Wondering if anyone on this forum has heard anything regarding him?
Many thanks!
TrevG
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