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Cystoscopy was done 2 days ago & Tumor found.

5 years 3 months ago #48888 by Aktommy
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.

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5 years 3 months ago #48886 by MadLove
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...
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5 years 3 months ago - 5 years 3 months ago #48885 by Alan
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.
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5 years 3 months ago #48884 by Aktommy
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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