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Recently diagnosed & scared
Hi all, thank you in advance for your support and advice.
I am a 55 yr old male that had some urination issues In may 2020. My PCP went down the path of prostrate exam and PSA. Ultimately he recommended monitoring. In late July it happened again, urgent need with pain. I was referred to a urologist who did an evaluation and ruled out an infection. On 8/22 I had blood in my urine and was back at the urologist the next day. Had a CT scan which found a bladder tumor and then on 8/27 I had a cystoscopy that confirmed 3 small tumors. The CT scan showed no other tumors in any other location. My TURBT was done on 9/14, so less than 2 weeks ago, and I had a catheter for 2 days. The pathology finally came back on 9/21 with a diagnosis of high grade but not muscle invasive. Doctor said that there is still a 33% chance that it is in the muscle and a second TURBT is scheduled for 10/26, exactly 6 weeks after the first.
Besides some lingering urgency issues my urination is OK with no blood or cloudy since a day or two after the catheter was removed. I have drank a small pool of water.
Since the first cystoscopy on 8/27 I have had bad lower back and flank pain along with burning in the groin. Within the past week I have pins and needles in my hands and feet with feet cramping. I am trying to advocate for myself and seeking further evaluation or treatment but because it is non muscle invasive at the moment nobody wants to do more except wait till after the 2nd TURBT. It is such a helpless and frustrating feeling that there is more going on and I need to take action.
Thanks for listening. Very scared in NH
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79 Replies
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I am not in your shoes but, I tell myself the cysto is usually no more than 5-10 minutes and it is over. Is it fun? No! However, I wouldn’t want an OR visit as I have been knocked out too many times for worse things. Carotid, triple bypass, torn wrist ligaments, 2 hernias and other diagnostic tests. Cystos are a piece of cake after those others.
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.
Hi Sara Anne,
I understand and agree with both your posts. RileyNH just completed his 6th BCG treatment and has not had a follow-up cystoscopy yet. The issue, as I understand it, is that his urologist (for some unknown reason) is planning to do this in the OR under general anesthesia, and not in his office. RileyNH – Please correct me if I’m mistaken.
Thanks,
Mike
Thanks for the replies all. I will be engaging my neurologist on Monday morning to get him to agree that the surgery could be detrimental to my parallel condition and then engage my urologist. Don’t think he will like this change but for me it makes the most sense. Let’s see what he says Monday, if I can get in touch with him.
Maybe my post wasn’t clear. Cystoscopy (done in the office) and a TURB (transurethral resection of the bladder) are two different procedures with different purposes. The samples your doctor “pinched off” during an office cystoscopy were sort of like urine cytology. IF they indicate the presence of cancer it would be necessary to have a TURB under general anesthesia to remove all visible cancer and determine the extent of it as well as the grade. This would not be possible in an office cystoscopy.
I suspect that your urologist doesn’t think cancer has returned, but is just making sure that what he sees during your follow-up is NOT cancer. If the samples indicate that there IS cancer, he would do a TURB in the hospital. Follow-up cystoscopy is never done under general anesthesia in the hospital.
If he recommends a TURB is is essential that it be done,
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Sara Anne,
The tissue samples taken during my cystoscopy did not result in any significant pain for me. When he cauterized the sample sites, I felt a little “pinch” of pain, but it was definitely tolerable. There was no measurable pain after a couple minutes for me. In contrast, I did not like the lingering urethra pain associated with recovery from the “big guns” used in the TURBT. If I had the choice to have the follow-up cystoscopy done in a procedure room with smaller equipment, I’d definitely go that route.
The reason that a TURB (not cystoscopy) is done in the hospital under anesthesia is that it would be PAINFUL. The urologist is not only removing samples for biopsy but also removing as much of the tumor(s) as he can. During your recent cystoscopy the urologist snipped very small samples to send for testing. IF they turn out to be cancerous he will need to a. remove them completely from the bladder and b. take other samples from multiple sites to send to the pathology lab. During a TURB the urologist also tries to include small samples of muscle tissue near suspected tumor sites to be sure that any cancer present has not invaded the underlying muscle.
Just as you, I had very small samples taken during a cystoscopy. My bladder showed what appeared to be irritation cystitis from the BCG but the urologist wanted to be sure that the cancer had not returned. He told me what he was going to do and asked it I thought I could endure it. I said yes. It was over quickly but did really hurt for a few seconds. I wouldn’t want to do it again!! But the tissue samples showed what the urologist already thought…no return of cancer, but irritation from the BCG.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi RileyNH,
I just had my first cystoscopy following the initial 6 BCG treatments, and my urologist did this in a procedure room in his office, and not in the operating room. This was very tolerable for me, and was over within minutes, and was easier on me than a BCG treatment. During the procedure, he took two biopsies of tissue from the inside of my bladder, while I watched it all on the same monitor he was looking at.
From talking to my urologist during that visit, my take is that if there is obvious visual evidence of high grade carcinoma, they have to remove it with larger equipment that they use in the OR. This said, if your urologist sees a tumor like this with a simple scope procedure, he’d simply schedule you for subsequent time in the OR to properly remove it.
If I was you, I’d question why he wants to use the “big guns” on a follow up exam. I see the negative aspects as being these: If you’re paying for this before your insurance deductible is met, it’s probably going to be more $ out of pocket. Also, the potential for complications due to your neuropathy, also the potential for complications due to general anesthesia, also the potential for you to have to endure a catheter for a few days, also potential for more pain in recovery because the OR scope is larger in diameter.
The only benefit I can see to doing this in the OR, is that if you have a visually-noticeable recurrence of cancer, it can be dealt with in the same visit. However, in my opinion, the benefit doesn’t outweigh the risk. I’d certainly question why he wants to do it this way.
Mike
RileyNH
I know from my past experience that the anesthesiologist always has a chat with me before a surgical procedure and one of the questions is about fear of being ‘put under’ – I think the thought process behind that is issues for the patient coming out of anesthesia.
I am curious why the doc is doing the cysto in the OR to begin with, as all my follow-up ones have been in his office.
Do you know if he has plans of taking tissue samples?
My opinion is to discuss your fears with your team and find out what options can be provided – again just my opinion, but as I always say you are in charge of you treatment.
Let us know the outcome of your decision as well as the cysto results.
We are with you through your journey.
Ciao
Hi Grade T1 CIS
Hello, I am scheduled for an OR cysto on Thursday. With my neuropathy and Inflammation being the enemy of neuropathy I am questioning whether I ask for an in office cysto instead. I fear the anesthesia and entire process of surgery for a possible 10 minute scope would have a negative effect on my neuropathy. Probably a question for my neurologist but thinking of cancelling the OR cysto and requesting one in the office. Looking for opinions and feedback.
The cystoscope is the key! Cytology often will send false “positives”. At the same time, I would quiz your Uro to be sure no more tests are needed.
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.
my lab from last november said “suspicious for high-grade urothelial carcinoma” so the doc ordered another lab. this one from last week just says “atypical urothelial cells,” which is the lab result that started this whole thing about a year ago. i already had my turbt and bcgs. most recent scope shows no return of tumors.
Hi Riley,
I will echo what others have suggested – give it a try!
For me, I cut back on alcholic beverages because I didn’t want there to be a chance that it would thin my blood to the point that it may develop complications with bleeding. This was simply due to the fact that my urologist kept reiterating that it was normal to see blood (brown or red) during urination while undergoing BCG. This said, I didn’t have any signs of bleeding, and was probably being overly cautious.
My 6th treatment was right before Christmas, so with New Years Eve right around the corner, I welcomed the new year with several glasses of champagne and welcomed the tears of joy and apprehension that surfaced because of it.
I wish you and everyone here a Happy and CANCER-FREE New Year!
RileyNH
Glad to hear you have completed #4 – I find the rotation somewhat funny as the bladder is emptied prior to the instillation of the BCG.
Anyway – I found caffeine to be the major irritant for me – but I’ve been in recovery for 20 years now – so there is no way I am giving it up LOL
I have an NA beer every once in a while and have not had any issues from it regarding irritation – just as when I used to drink, makes me pee a lot – but then again everything does these days.
I agree with Sara Anne – give it a try and see what happens.
Happy New Year everyone, may 2021 be SOOOOOOOO much better than 2020.
Hi Grade T1 CIS
Happy New Year, Riley!!
Everyone is different so I can only tell you my experience. I didn’t live life much different while I was on BCG. A drink here or there never seemed to make any difference!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi folks. Happy new year to everyone. Catching up on last week and I completed #4 BCG with no issues. Held it for 2 hours while rotating every 15-20 minutes with some lite dancing the last 30 to hold it. Lol. Had the typical urgency issues while drinking a ton of water the first 24 hours but only minor burning. #5 this upcoming Wednesday and almost there.
Quick question, although I have done a great job avoiding any bladder irritant over the past several months, carbonated, citrus, etc I was wondering about lite alcohol usage during BCG. Was looking to have a glass or two of wine. Would love a beer too but curious to anyone’s thoughts or experience. In the past, before BCG, I would have two or three a week with no effects to my bladder.
Thank you in advance.
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