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Cystoscopy was done 2 days ago & Tumor found.
Hello everyone and I am sorry but also happy that there is this group. I have been reading non stop since Monday when my Tumor was found (hate saying my tumor). I am a 49 year old male who has taken good care of himself, I have been athletic most of my life. I used to be a trainer for Golds Gym and owned my own gym for some time. This news of a tumor was quite the surprise to me and was found by chance from a hip MRI a few months ago. I was scheduled a Cystoscopy but this 250 lb weight lifter chickened out for my first time.
My wife who just suffered through the loss of her mother dying from brain cancer this year made this new appointment which she held my hand through. So now that I lived through that expierience I get to have a TURBET tomorrow which I am having anxiety over. It is crazy the thoughts that go through ones head when facing this challenge and I applaud all of you who have the courage to get through it. I’m quickly realizing I am not as strong of a person as I thought I was.
About three years ago I had torn an abdominal muscle at work and had a urine sample taken. I was called soon after and was told I had quite a lot of blood in my urine and that was the first sign I have been having troubles. I regret to say that I ignored these signs and never followed up, so here I am a product of my own actions. I’ve got 2 sons and and the best wife that any guy could dream about. 23 years together and it’s been a honeymoon every day. I feel horrible for my wife due to her loosing her mother to Cancer, my wife was her care giver and stayed at her mothers side till she passed. I hate to think of her now dealing with her husband now facing Cancer. I know I need to slow down and breathe and wait for the pathology test but these thoughts are racing through my head. I know all of you have probably had these same feelings so I will value any and all advice from you all.
Thank you
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9 Replies
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Oh the male attitude will drive spouses crazy!!! I am the male species, so I know this all too well. ha ha
And here I have a comedy break form the serious cancer thing:
For your whole life, bathroom humor has been frowned upon by polite society.
From cancer on….. Bathroom and incontinence humor is absolutely approved by this site. As a matter of fact…. it is encouraged and necessary.
Larry the Cable guy says “Lord, I apologize for that joke. But it was funny, I don’t care who you are!!!!!”To all you survivors out there…… Incontinence will either become funny or it will make you go crazy! Either way you are gonna have it. Deal with it and laugh at yourself. It will help you grow up.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]
Ok so I just had my TURBT and I am sitting on the hospital toilet trying to urinate. This feeling of having to go to the bathroom is reallllly irritating. I’ve gone a few times here at the hospital but little amounts and lots of pinkish blood a and a few clots. My wife pulled the vehicle up front but I’m sitting on the toilet trying to go again.
Good news is my doc thinks the tumor was just part of my prostate extending into the bladder, we will wait and see once we get the pathology test in.
So no catheter, hurts to pee, blood in urine as expected and the sensation of needing to urinate but not much if anything coming out. I think these are normal sensations.
George,
Credible explanation for the night owl posting. The spouse took the BCG bladder out to a “work” function 30 hours after the first instillation and learned that it is not as tolerant of his favorite cold beverages as the post TURBT bladder. He claims moderation was the rule but felt like he was reliving some of his bachelor days while on shore leave. Lesson learned (and all is well.)
Husband’s journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto’s
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto due 9/2017
Just want to reiterate how important it is to be treated by an experienced bladder cancer specialist. We live in a rural area 300 miles away from a major hospital. Started local treatment but the switched to an academic medical center . It meant lots of travel but is worth it . Not only will you have the experience of a specialist who has seen lots of cases like yours but the nurses give lots of tips and other suggestions to make your life easier . They also let you know when and if to be concerned . We are 2 years into the ” journey” and doing ok
Holy cow!
I first have to say….. What are you two doing up at such an hour! I’m guessing that you were both on this forum at 3am!
From now on…. My advice is to learn to get some rest! You are BOTH going to need it!
But, I do have an anicdote for you both.
No matter how strong you are…. hearing cancer will turn your muscle to jelly. And that is normal. But you will find a whole new kind of strength, believe me.
Don’t worry about the catheter. You will have one…. but only for a while. And it won’t really bother you. I promise.There will be lots of challenges to face. And you will pass all of the tests. You will be afraid. And that is normal. But when yo look back on all of this…. You will be amazed at how much you learned about yourself during the trip.
Broken bones, torn ligaments, accidents, and other injuries will fade in importance when you think of how you beat cancer. And here’s to that!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
As a care giver I know the anticipation is tough and can only imagine how it must feel as the one about to have the procedure. The good news is your having the TURBT so quickly after your cystoscopy even if it hadn’t allowed much time for getting questions asked.
For both the TURBT’s, my husband did wake up with a catheter. I think part of the recovery room time with a cath allows staff to monitor the output. I sat with him in recovery for about an hour the second time and a bit longer the first time.
For both TURBT recoveries, three prescriptions were written. One was an antibiotic (Cipro) and two were for pain management (Percocet and Pyridium). The Pyridium treats bladder pain/burning and sense of urgency. It turns urine into an orange color which may stain surfaces if not wiped up.
The Pyridium could not be given while in recovery (so staff could monitor normal output). There was a hospital pharmacy so we were able to have all prescriptions filled and start the Pyridium right after discharge. I don’t know if he could notice bladder discomfort then because he was distracted by the discomfort of the catheter. The antibiotic started the next day as he received IV antibiotic with the procedure and the Percocet was started 4-6 hours after discharge as needed.
I will be thinking about you and a speedy recovery from your procedure. And no heavy lifting for a while! I recall instructions of nothing over 10 pounds for a while. My husband was happy to have a doctor’s note excusing him from trash and laundry duty.
Best wishes. Will look forward to an update when you are able and willing to share.
Husband’s journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto’s
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto due 9/2017
Thank you both for replying. I’m honestly really nervous for my TURBT tomorrow, I’m normally pretty calm with surgeries, I’ve had a spinal fusion with hardware from a motorcycle wreck, shoulder surgery, bi lateral carpal surgery just this year and just a month ago went through 16 spine injections with nerve alabation on both sides of my spine. It’s crazy I have way more anxiety for the Cystoscopy and the TURBT.
My doc never said anything about a catheter after the TURBT, I’m keeping my fingers crossed that I do not wake up with one. Everything has been so vauge at this time, I’m not liking this feeling of uncertainty. Trying hard to remain positive but it’s hard keeping the fear at bay. This group has been great in helping me understand this process and I thank everyone for that.
Dear Aktommy,
I’m sorry but glad you found the forum. It has been a great source of information for my family.
My 51 year old husband is somewhat of a newbie and had his first TURBT 03-11-15 with an initial diagnosis of non-invasive high grade cancer (urothelial carcinoma in situ). Following standard guidelines, he had a repeat TURBT on 4-22-15 with the same result. About six weeks later, on 06-02-15, he received his first of six weekly instillations of BCG.
The best initial feedback from the forum was to work with a bladder cancer specialist who sees and treats many bladder cancer patients. We switched from a local urologist in our rural county to a specialist two hours away at Johns Hopkins University. That decision provided immediate relief in having confidence in receiving excellent care and treatment.
Waiting for the first pathology report was nerve wracking. The report was actually available online through a patient portal on a Friday. I read it and interpreted it wrongly and fretted through the weekend before getting the phone call early the next week. My husband wasn’t aware the report was available and had already commented he would know soon enough when the doctor made the call. If you have similar access to results, try not to jump to conclusions.
As for the TURBT experience, for the first TURBT, my husband was sent home with a catheter. In reading other posts, it seems to vary on whether a Foley catheter remains in place after the TURBT. For the repeat TURBT, the catheter was removed in the recovery room. The catheter at home for three days after the first TURBT was very uncomfortable for my husband. He was very diligent in staying well hydrated and as a result was filling the cath bag easily. The discharge instructions for the cath bag referred to emptying it directly in the toilet. In the recovery room, the nurse emptied the cath bag first into a urinal container. I used that method at home frequently and especially at night. My husband appreciated not having to move from bed as often. Removal of the cath was done at home following some Youtube instructions and also since our doctor said this was something we could do rather than make a two hour one way trip to him. And it was easy to do.
Once it was easier to move around without the catheter, my husband started to resume normal activities and attempted to return to work (in an office) three days after the first TURBT. He has a lengthy commute and was not drinking as much in the day to try and avoid a stop on the ride to and from work. He experienced some bladder pain as a result. Stay hydrated! Fatigue lingered for a while for my husband. While I don’t know the size, his tumor was large, and I wonder if the extent of the resection was a factor in his recovery time. To manage the fatigue, my husband stayed with friends near work during the week, worked reduced hours and came home on the weekend.
Recovery from the repeat TURBT was much easier and required less care taking. My husband (of 23 years, partner for 29) jokes about the lack of attention now. I am sorry for your wife’s recent loss and am glad she is there with you on this journey. This forum is for care givers as well.
Best wishes on your TURBT!
Husband’s journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto’s
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto due 9/2017
First, as you said take a deep breath and welcome to “our club” that we wish no one joined! The TURB will tell you more so stay in the moment one day at a time until that is done. It is still considered pretty “minor” surgery or procedure-not try to minimize it as anytime someone is cutting on me it is important after torn wrist ligaments, 2 hernias and 2 TURBS. You will almost certainly be subjected to more cystoscopies in the future as follow ups. I consider them a nuisance, no fun etc. Painful? More like uncomfortable and over in 2-3 minutes.
One side observation (none of us are doctors) but a torn abdominal muscle with blood 3 years ago probably wasn’t/isn’t bladder cancer, you probably would not be around! Also, another encouragement is to be sure your URO sees LOTS of bladder cancer (100+ cases a year) as so many see mostly prostatic cancer. This is a sneaky albeit a treatable disease. Also, do not hesitate to get a second opinion at anytime at a major bladder cancer center, especially where most of us have gone through a second TURB to verify “margins” are good for the pathology reports.
Keep posting with questions. Someone that has been there and done that will have some insight!
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.Sign In to reply.
