Here we go

2 years 3 weeks ago #59335 by October28
Replied by October28 on topic Here we go
I am replying to this old post but I hope it will help someone like this writer's husband.

I will have a cystoscopy tomorrow, under anesthesia. My second ever. This is because, like your husband, I found the first cystoscopy really shocking and painful, and administered in the same matter-of-fact way that you describe.

No more will I listen to this nonsense about "slight discomfort but quick" procedure. It seemed like hours. And haunted me for weeks.

So I insisted on light sedation or anything that would mitigate recall of what was the worst moment in my health history. Uro balked. Offered me Valium. I saw a anesthesiologist and connected him to Uro.

Most Uros are hardly charming, not noted for their bedside manner. Don't let them intimidate you into thinking a cysto is no big deal. It may be tolerable for some men, but not for most. And for me, it has been really bad. The Uro does not want to take the time or book the room where sedation can happen. Insist. Call your insurance co. Get a note from a psychologist. Anything to get asleep for the cysto.

So I go tomorrow, but with anesthesia and the peace of mind that I won't have to replay the assault for weeks to come. Then another round of BCG. When the world returns to some health post-COVID, I plan to dump the Uro and search for a healer rather than a brilliant plumber. I wish you courage in finding a good one as well. Hang in there.

Michael H.

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3 years 1 week ago #57514 by Scaredwife
Replied by Scaredwife on topic Here we go
The uro insists that a cyst in the testicle wont cause any issues until it gets to be too large. He asked my husband if it was causing pain and to which my husband said yes he randomly has pain that he believes starts in the testicle and radiates into the groin. The uro said he could go in and remove the cyst but that he only recommends removal when it is causing unbearable pain because the chance of another cyst forming is high, the surgery also has a risk of causing other issues such as impotency and that lastly it is a very painful procedure. So knowing all of that my husband said he's ok with holding off until the pain becomes constant and unbearable.

The CT was done Friday morning and he was told by tech who performed the scan that an official report would be available in a few business days.

The second opinion is for a couple of reasons. Number one is for a second set of eyes to just hopefully confirm what all we have been told and give my husband some sense of peace with all of this. Second though is because my husband is not really liking this uro. His bedside manner is severely lacking. The first visit where bladder cancer was brought up was the first flag. He spoke of bladder cancer as a reason for the blood but mentioned no other possible causes. Of course this scared my husband and myself. To me he should have spoke of the other possible causes and also explained that some people just have blood in their urine with no cause ever being found. This I believe would have lessened the worry and stress we endured waiting for the tests. But the biggest thing was at the cystoscopy. My husband said the nurse did rub some gel that he thought may be for numbing on his penis but at the base only. The uro did not use any lidocaine or even lubricant but rather just inserted the scope into the urethra bare. Of course this hurt and my husband said that was the most painful experience hes ever had. So with all that my husband isnt so fond of continuing with this uro anyway.

All in all I'm so happy that bladder cancer was not detected. I just hate that something else was found which has put us back in a sort of limbo until we get answers.

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3 years 1 week ago #57513 by Alan
Replied by Alan on topic Here we go
Thanks for the update. Glad it is not bladder cancer. I am a little surprised an actual radiologist hasn't read the scan yet but..... I had an almost reversal read. Radiologist didn't not see my small, papillary tumor BUT my Uro did! An enlarged lymph node can be many things although the 6 month follow up is good idea. What did your Uro say on the possibility the cyst could be causing the blood? Your idea of a second opinion also makes sense if for no other reason a set of fresh eyes.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 1 week ago #57512 by Scaredwife
Replied by Scaredwife on topic Here we go
Alan, thank you for the kind words of support. My husband went for his tests Friday. The ultra sound shows the lump on his testicle is a cyst. The cystoscopy showed a nice healthy bladder. The CT however (which was read by the urologist, we are still waiting for the radiologists report) shows an enlarged lymph node on the right kidney. Couple that with the blood in the urine and random pain and we are still uneasy. My husband goes back in 6 months for a follow up scan to see if it has gotten any bigger and if so off to an oncologist we go. In the mean time were hunting for another urologist to provide a second opinion. So we have answers but now have new questions. Ugh.

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3 years 2 weeks ago - 3 years 2 weeks ago #57486 by Alan
Replied by Alan on topic Here we go

Welcome. You answered your own thoughts at the end when you said you know the need to wait. Yes, that is the best advice you can give to yourself! One day at a time is to life's challenges and triumphs. Passing blood can still be many things.

You simply will know more after the tests and they arre the normal tests. Absent an infection but, passing blood can still be many things. I have learned to try and not let my mind race on health issues....easier to say than not. Your concern is good just don't go to worry as bladder cancer, if that is what it is treatable and beatable. Evidenced by the many posters here.

Keep us posted and what the tests show. We will be most happy to hear it is nothing super important and we will gladly say nice to know you but get outta here and live your life!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The following user(s) said Thank You: Scaredwife

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3 years 2 weeks ago #57485 by Scaredwife
Here we go was created by Scaredwife
Hi all! I'm new and honestly I'm freaking out. My husband who is truly my best friend was recently told he may have bladder cancer. He will have a few tests this Friday and I know we shouldn't jump the gun before the results are in but I just have a bad feeling about all of this. Here's the rundown. Roughly 4 years ago my husband noticed a small marble sized lump on his left testicle. It didnt hurt and he had no symptoms of anything so he ignored it for a while. About a year and a half later he noticed it had grown so he told me about it and I insisted he get it looked at. His primary care doc said it was a cyst and nothing to worry about but still sent him to a urologist to ease his and my mind. Urologist felt it and had an ultrasound done and confirmed it was a cyst. Fast forward to about 9 months ago, husband started randomly complaining of pain in his testicles that radiated to his pelvis. He said it felt like someone was grabbing handfuls and squeezing. No rhyme or reason to it and it was random. Then he told me the cyst had more than doubled in size since he first found it. So I suggested he see a different urologist for another opinion. He went last week. Urologist felt it and said it was a cyst but that since it's been a while since it was last imaged he was gonna order an ultrasound. Appointment over and doc left the room. My husband said he almost immediately came right back in and said "you have a lot of blood in your urine, do you smoke?" My husband said no. He then asked if my husband used tobacco of any kind and my husband said he dips. The doc then said "this could be bladder cancer, I'm also ordering a CT scan and then you'll come back here so I can take a look inside your bladder." Then he again left the room this time without coming back. Ok so number one this doc is a bit of a jerk with a terrible bedside manner. So my husband will be having the ultrasound, CT scan and scope all this Friday. I know the doc wont have the radiologist report back but his nurse did say he would be able to look at the images. When my husband left the appointment he called me and told me what happened. I ofcourse immediately got on Google. I was looking for what else this could be. Then yesterday docs nurse called to say urine was clean. My husband asked her if she meant they were wrong about blood. She of course said no the report shows a large amount of blood but just no infection. Well now my husband and I are freaking out. He has no symptoms of infection or kidney or bladder stone. No symptoms of prostate problems either. No injury that he is aware of. So basically no explination for blood in the urine. I know some folks have blood in the urine that cannot be explained and that could be his situation but for some reason I just have this nagging feeling that Friday we will hear or fears outloud. I'm trying to be positive for him and not let him know how worried I am but inside I want to scream. He is truly my best friend, I cannot remember life before him and cannot imagine it without him. I know that I am not doing myself or him any good by essentially dooming him with cancer before the tests are even done. I just cannot stop the worrying. I think mostly because most times you hear of a cancer diagnosis being given when the doctor was seen for something unrelated.

I guess I'm not really asking any questions because I know I just need to wait a couple more days to get an actual answer. I guess I'm just here seeking support for the unknown right now. Not knowing is terrible but I guess it has to be better than an actual diagnosis.

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