Homepage – Forum › Forums › Newly Diagnosed With Bladder Cancer › 32 male, Recently diagnosed & 1st TURBT, blood in my urine & scared :(
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marysue.
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January 12, 2019 at 11:25 pm #33498
Darknight
ParticipantHi fellow friends;
My story: My daughter was born on May 8 after a rough delivery and emergency C-section. The usual hectic nature of a newborn one night few days later still in the hospital I noticed heavy blood in my urine. Ultimately I was referred to a urologist and had a cystoscopy to confirm a tumour which appeared as transitional cell carcinoma. Being in Toronto I managed to go to Princess Margaret where they performed supplementary tests and ultimately a successful TURBT in September. They had to make an incision along my urethra which left me with a catheter for ~10 days. The blood in my urine was fading but never disappeared, and given all the details my doc was not concerned when I went for pathology results in late Oct. Blood has been continuing since, on and off, but recently has gotten a little heavier. Because of the early bleeding in May, the tumour and cancer was caught very early thankfully (non muscle invasive) and so my family doctor feels it is unlikely another tumour as the surgery was fine and they said the rest of my bladder looked completely normal.
Has anyone else experienced blood in the urine even months after resection?
Also, I found the cystoscopy immensely painful. The needle for local anesthetic itself hurt a lot; I reacted with a loud uncontrollable yell of pain, and felt a great deal of pain for a few days after. I am extremely anxious as I have an upcoming scope in just over a week (Jan 21) and am wondering if there are any other options for anesthetisia? Did anyone else find it incredibly painful or was this unique to me? Are there any tricks or techniques to make the process less painful (medicine or otherwise)?
I have been visiting this forum since June 2018 but felt too scared to post anything; the warmth and kindness I see from everyone here is unlike anything else on the web. I’m really scared for both for this scope and what may be happening in there only months after having the cancer and tumour out and all the fears given my age etc. Bit of an emotional tunnel I’m going through with two young kids (have a 5 year old son also) and a feeling that things are getting worse instead of better. I’m sure you all have dealt or are probably actively dealing with this and I couldn’t find a better place to open up than here.. my genuine wishes of peace, happiness, and good health to all 🙂
The two stars in my dark night (not the gleeful fellow playing Santa):
January 13, 2019 at 9:55 am #33502Jack Moon
KeymasterHi Darknight
Sorry you have been diagnosed with bladder cancer especially at such young age.
I have had 3 Turbts and the longest time I experienced blood in the urine was about 2 weeks after the 1st Turbt.
I personally have never experienced pain during cystocopy except when the Uro took a biopsy using a ridgit instead of the normal flexible scope. I have never had local anesthetic for the test, only a numbing gel inserted prior to the test. The cystocopy I find uncomfortable but not painful.
Sorry I can’t be more help, but I wish you the very best at your upcoming scope.Jack
Forum ModeratorJanuary 13, 2019 at 11:07 am #33503Nightingale
KeymasterHello Darknight,
I was 51 yrs old when I got diagnosed; which is relatively young for Bladder Cancer. Like Jack I received a numbing gel which felt cold and the next thing I knew, the scope was in and I could see the inside of my bladder on the TV monitor. The only discomfort (pinching) I felt was when the scope was pushed past my prostate. The cancer was observed 2 subsequent times after the initial procedure and I went for regular checkups every three months, then six months then yearly. In all that time, the most discomfort I felt during cystoscopy was when a young Intern Urologist worked on me.
I too caught mine very early and now it has been 10 years since my first diagnosis. Approx 2 years ago, my Urologist congratulated me and indicated I had graduated – meaning I no longer had to go in for further check ups! I look back now and thank God that I am cancer free. I run, bike and swim, and more importantly watch what I eat.
The one suggestion I will make is that you talk with your Urologist and let him/her know what your experience with your first cystoscopy was like…😢. You may want to ask about the use of a numbing (cold) gel vs using a needle for anesthetic. I always believe in communicating by asking questions. There might be a reason why a needle was used.
I hope this is helpful. Please keep us posted on your progress
My best,
Alex
Forum Moderator.
January 13, 2019 at 12:16 pm #33507Darknight
ParticipantThanks to you both for sharing your info; it’s helped a lot.
My first scope was not done via UHN, and there was no explanation of the procedure or much else; I wasn’t even told I was receiving a needle, and was told to calm down when I reacted from the pain. Largely the reasons I sought out PMH and my current urologist, this will be my first scope with them!
I will indeed ask about the gel option which sounds infinitely better.
Have also made changes to my lifestyle notably with smoking (started at 14) and my diet. I play soccer weekly and am relatively active with the two kids, but am certainly more conscious of everything as a family so that our kids will hopefully grow up with the right habits and lifestyle.
January 17, 2019 at 6:32 pm #33551marysue
ParticipantHi Darknight:
Welcome to Bladder Cancer Canada and sorry to learn that you have been diagnosed at such a young age. Congrats on the birth of your second little one. I can only half imagine what the stress level was like dealing with the challenges of the onset of BC on top of a complicated delivery and the first tired weeks of dealing with a new born and not to mention trying to meet the demands of your older child.
I have 4 sons now all adults but the two youngest were teenagers when I was first diagnosed at age 50 in 2008. It is scary when we ourselves have an illness and have people depending on us. I too, made a lot of lifestyle changes and believe those have contributed to me remaining cancer free for close to ten years. It was tough explaining everything to my kids but they had to know.
As for your painful cysto – I too, recommend that you investigate why they administered the anesthetic via a needle instead of a freezing gel. That seems like cruel and unusual punishment in my books. The closest thing I had to that was a nerve block in my “area” for an episiotomy for my first kid. The needle was really painful as was the incision when the freezing wore off. I had no idea at the time what that was or why I had to have it. It was not explained and needless to say I was more than a little p****** off. Being wiser, I refused it for my subsequent births.
Same for the incision in the urethra. I can’t comment on that not being a doctor but I have questions and if I was a guy I’d be wanting to know why my privates had to be sliced. My reaction now to indifferent doctors, nurses and practitioners is “How many of these have you had?” or “How would you like to undergo what I have to?” It usually invokes a response and wakes them up a bit.
I have learned through this whole process to ask a heck of a lot of questions about exactly how a procedure will go down. When I was having the first TURBT – I asked what would be sticking in me when I woke up etc. That question came about as a result of a bad childhood urological surgical experience and an emergency hysterectomy that I had in 2002 in addition to my first childbirth experience. With the big H surgery, there was no time for me to attend the pre op class so I had no idea I’d wake up on oxygen, have a million machines around me and be tethered to the bed with leg pumps, and a catheter. It was scary and very painful to say the least.
So I think what I’m trying to say is that it is your right as a patient to have the full explanation and understanding of any procedure BEFORE undergoing it, and the results and the offering of any alternative options if suitable and available. I hope that things get better going forward. Best Wishes. ((((HUGS))))
January 17, 2019 at 8:20 pm #33555Darknight
ParticipantHi Mary Sue — thanks for your warm message and story, it is inspirational and comforting.
I really like the “have you undergone” approach, I think this is an excellent one and will utilize it to get a reality check on what is summarized to me; thanks for that.
I often joke with my wife that I can now somewhat relate to the experience of giving birth, she laughs and then punches me.
I also laugh at the irony of “p*** off”, when applied literally to bladder cancer; our p*** being off is like a slang/colloquial reference to BC : )
hugs back at you
January 19, 2019 at 4:16 pm #33573Summerton
ParticipantHi Darknight,
I am a 4 year cancer survivor, and when I was first diagnosed, I had many cystos and Turbts. I personally did not had any serious discomfort with any of them. They were all done with the numbing gel, and a flexible camera. My brother, on the other hand, experienced a similar one to yours. He is quite “up tight” with anything to do with needles, and as a result of his first Cysto, he suffered a panic attack and he had to be restrained for the procedure. I suggested that he confer with his GP about getting a script for Ativan, and taking it prior to the procedure. In addition, I suggested that he speak with the urologist about using a numbing gel as opposed to a needle . He did this, and his subsequent Cystos were somewhat more tolerable.
Dave Summerton
February 25, 2019 at 5:18 pm #33989wapta
ParticipantH
I was diagnosed at 38 y/o with non muscle invasive bladder cancer, had one TURBT 2008 followed by surveillance cystoscopy every 3 months. I have no risk factors for bladder cancer.
The cystocopy I also find uncomfortable but not painful (with my regular urologist, the locum caused me much discomfort).
Urologist used numbing gel (likely lidocaine), which comes in a syringe (no needle), insert the gel and wait 5 minutes….then proceed.
I had burning in my urethra post cystoscopy, this was related to a yeast infection. On few occasions yeast and infections in urine have been the source of my discomforts.
Balanitis is a skin irritation on the head of the penis that can affect men. This can be uncomfortable and sometimes painful, but it is not usually serious. It can be relieved with topical medication by your GP who can take a swab for culture of yeast/infection.
You are always in a position to ask question, never stop being an advocate for your own health. Hope this helps.
March 24, 2019 at 7:58 pm #34801marysue
ParticipantAll patients have the right to any available comfort measures to get them through difficult treatments/procedures be it anesthetics or otherwise. I always suggest to people if doctors, nurses, or any other practitioners refuse you this find out who the local patient advocate person/group is at the hospital/clinic you are dealing with and let them know what happened. This usually results in improved care/service.
I had a very painful cysto in May 2011 because my then uro was delayed in coming to do my exam. The nurse administered the anesthetic as usual but I waited for over 30 minutes in the stirrups instead of the usual 5. What I didn’t know and the nurse and doc didn’t think about was that the freezing had worn off. I didn’t know until the scope was inserted (this was a rigid scope to boot!) and boy did it hurt! I yelled something fierce being taken aback by the pain. They held me down so the uro could finish the exam even though I yelled for him to stop. I complained to the patient advocate department about it. Even though no one could take back what I went through, my experience resulted in nurses being more careful about noting the time that the anesthetic was administered.
Just to be safe I now ask for a double dose of anesthetic and have noticed that it does last longer and that first pee after the exam doesn’t hurt as much. No one has given me any issue about asking for the extra freezing. I just tell them one dose doesn’t cut it.
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