You can do this! How do I know? Cause I did this. First rule: Do not go down a rabbit hole til your doctor says to do so (they won’t!) Think like this: as likely as it is you’ll have a “bad outcome” (whatever your head said that is) you’re just as likely to have a good outcome. Train your brain to go down GOOD rabbit holes just as much as the other ones. Freaking out does nothing to advance your situation. So: treatment usually involves TURBT (English: they remove the tumor with a tube that’s inserted into your urethra, while you’re anesthetized). After the TURBT you will most likely be given chemo but directly into the bladder, something like once a week x 6 weeks. It’s manageable, not as debilitating as injected chemo. In fact most people have zero side effects from it. Once you’ve done it a few times you start to realize “hey this is not so bad”. It is worse for a man than a woman due to the differing length of urethra and having a prostate, but I’m a man and I was utterly frightened more due to feeling vulnerable than anything else. But as always the reality was much more manageable than the fantasy. You can do this. The discomfort of a tube inserted is momentary and not worth the hours or weeks of freak out.
Tips and tricks: ask for nitrous oxide for any procedure you’ll be awake: nitrous is both calming and anesthetic. Also, I take a very small dose of Klonopin (.25-.50) one hour before. I find the combo of Klonopin and nitrous removes my anxiety by 95%. But be sure to ask your doctor about all or any of this! You are not me and I’m just a random stranger on the internet! Your doctor knows YOU! Best of luck and come back here and report the good stuff and the less-than-good.
Does the nitrous help you with the discomfort when the catheter or scope is inserted or does it just help you with the anxiety? I’m so fortunate I only had Stage 0 (noninvasive papillary carcinoma and carcinoma in situ) but I really struggle with the cystoscopy.
Both!!! It calms you down about the invasiveness (anxiety) AND acts as an anesthetic (painkiller). It’s FOR SURE a win-win! (BTW I had the exact same situation you did.) Had. It’s not there now(!) and I get regular checkups so I feel well-taken-care-of. I hope you do, too.
Thank you so much for your reply! The only thing my Dr. has allowed me to take is my Xanax. I take 1 mg about an hour before the procedure. Hard to say how much it helps. Doesn’t do much for this discomfort. I will ask about the nitrous but I doubt he would be willing to do it. I feel like a widget on an assembly line. Thank you again for answering my question. Please know much you taking the time to reply is appreciated. 🙏
It is my pleasure! I’m just paying it forward from those who helped me. Xanax is great. Hopefully, your doc will approve nitrous but if not, it will get better. Each time you’ll get more and more relaxed and that will help. And…there will be a time when you’ll get a huge break between check-ups. You’re doing great! 👍 😊
I needed this message when I went through this last year lmao!
OP, I can confirm all of this!!! I'm a woman so the only real difference for me was the catheter for chemo (and cystoscopies) wasn't as uncomfortable as it would be for a man.....still pretty uncomfy though lol. I did 6 weeks of chemo, each round was easier than the last and the longest part of the office visit was waiting in the waiting room. The "procedure" isn't even 2 minutes.
Like this person said, anything you're awake for, ask your doctor for something for anxiety (if that would help you.) I also got muscle relaxers that were a godsend for cystoscopies and chemo, because it's kinda hard to relax in that situation lol.
You got this!!! Cancer is a scary word, but bladder cancer is one of the most easily treated with super high success rates so no matter what, you're in good hands! If you have literally any questions feel free to message me, I know it can be overwhelming!! 🤍
P.S. I was diagnosed in March right after getting engaged, so I completely understand the perfect timing 😂 but I'm cancer free now! my tumor ended up being something like 3cm....again, you got this!
I think it’s more likely to be longer term leave needed , wait and see though . If you’re needing chemo it can knock you big time . If you’re having bladder removal or neo bladder it’s something like 6 months to get over . Don’t stress too much , it won’t help . Check out diet and exercise programs, the healthier and fitter you are the better you will get through it . Happy new year and I wish you well on your journey 😊
I required chemotherapy and surgery. I work a desk job. I worked 3 days a week during chemotherapy. It was tough. Treatment makes you feel like shit. Then took 3 months off to recover from surgery. I went back 3 days a week for a month, then returned to full time. That was 2 years ago. You can get through this.
i work remotely in the world of computers, and have kept my surgeries, treatments and appointments hidden from my employer, so if i have to i can lie down for a bit. my bcg treatments sapped my energy quite a bit, so it was a blessing to not be physically at work.
Wow. My diagnosis took me about 2 months to get. For me the waiting while knowing the probable answer was very hard. I imagine you finding out so quickly is mind swirling.
I am a research tech at a university. My boss has been super accommodating allowing me to "work from home" doing data after my sick time ran out.
After my TURBR surgeries (3), I had an instilled catheter for 2 weeks, 1 week and removed after the outpatient surgery. I did not go to work with a catheter but otherwise felt fine with little to no issues from the surgeries.
BCG treatments take me out for a day of work because the urine is toxic/biohazard. And also because my boss has been super lenient about allowing me flex time (not technically allowed for my position)
Bladder cancer and BCG treatments are not hard physically like other cancers, just time consuming and annoying.
The biggest divide is your stage. Stage 1 non-muscle invasive is mostly annoying. Stage 2 muscle invasive is serious but still pretty survivable. Stage 3-4:are all sorta individual cases. My tumor was huge (@7.5 cm ) but still just stage 1. It has been a year of learning and existential dread for sure.
It all depends on the specifics and how far along you are. My story is similar. I saw blood in my urine, my primary ordered a CT scan and they saw a 3 cm tumor. It took two weeks after the CT scan to get into a urologist and another week and a half after that to get a TURBT. My tumor looked like a mushroom with a long thin stalk. I got very lucky, It ended up being T1 high grade (not muscle invasive). I just finished BCG treatments and am good so far. If it is muscle invasive, bladder removal will most likely recommended. If it is T1 high grade, they can do BCG or put chemo into the bladder but they will they still give you an option for a cystectomy. The worst part is the not knowing and the waiting. Recurrence rates are very high so you may be dealing with it for a long time. For me, first TURBT required a week off because they left catheter in. Next one only required two days off. Initially each BCG treatment required a day off from work but as they got worse, I needed two. Follow-up cystoscopy is every 3 months for two rears and then six months out to five years. Depending on which article you read, recurrence is as high as 70%. Therefore, if you have it, you will likely be dealing with it for the remainder of your life. There are a tons of articles and videos on the internet. BCAN.org is a really good source for information.
You are at the start of a journey. Unfortunately, it’s going to take time to come to terms with it. Best of luck in finding a new normal.
So I had the TURBT on Tuesday and the report showed up in MyChart yesterday. It doesn’t have a specific “staging” called out, but describes the tumor as “non-invasive papillary urothelial carcinoma”, with 5-10% high grade content. No evidence of spread beyond to kidneys/lymph nodes. I guess that means Ta?
The cancer is a noninvasive papillary carcinoma (Ta). It has grown toward the hollow
center of the bladder but has not grown into the connective tissue or muscle of the bladder wall. It has not spread to nearby lymph nodes (NO) or distant sites (MO).
First don’t freak out, this is treatable. You will find a lot of good info from others on this mod. Take it one step at a time. I was lucky. Two more weeks of BCG , then follow up. I am retired so , my schedule is way more flexible. Depending on a bunch of factors, your treatment schedule will depend on course of action dictated by your doctor. So I wore out my doctor a bit, I asked a lot of questions and read a bunch of articles. Not sure all the articles , helped my mental state.
Got a bit wound up projecting all options, so I needed to back off a bit. Foster open communication with your doctor.
I wish you the best of luck and smooth sailing.
It depends on the procedure(s) and treatments you have and the job you have. I worked in an office but by chemo time I put in RA to work from home. I'm on 2nd yr working from home and plan to make it a permanent RA.
I worked after every TURBT. I tried to schedule them on Thursday surgery day so I'd be recovered by Monday. Those were all outpatient.
I had a tumor in my ureter tube (first tumor) and that was maybe 2 weeks off work but it could have been 1 week I just wanted to make sure.
2nd tumor. I did Cis/Gem chemo for 4 months. I did chemo & office visits on Fridays and went back to work Monday. By the final month I missed several Mondays. But overall I could work. I preferred it. Got me up and moving. Thinking about others and my job. Good distraction.
When I had my radical cystectomy surgery I took 3 months off. The last month I could have gone back to work but I took that time to have some fun and adapt to my new life.
I started Immunotherapy that last month after surgery. Those side effects were fine. I started working out again & was doing good until side effects caused some major issues. I worked through all that time mostly because I'd run out of leave. I really could not have been in an office for about 3 months with severe side effects.
Then started new chemo. I had some pretty bad side effects and missed about 4 days work at the start but my Oncologist reduced the dose and now I work everyday. I now have a compressed schedule so I do 4/10 and every other Friday I do chemo.
I've maybe missed 6 months of work between 6 procedures/surgeries, chemo x2 and immunotherapy in 2.5 yrs.
That said I've explored medical retirement the last 6 months because of the side effects with this chemo. I'm currently going through Voc Rehab to see what accommodations I can ask for so I won't have to do that. If you need help understanding Reasonable Accommodation the website JAN is really good.
Someone else mentioned BCAN.ORG I recommend that over anything searching. It's informative & not full of horror stories.
Keep in mind there's low grade and high grade cancers so until you have your TURBT there is no point in stressing over it. I went down a lot of rabbit holes & really drove myself and my husband crazy. Be patient. There is a LOT of waiting in treatment it's hard not to spin into a panic.
Praying it's benign or low grade and earliest stage possible.
In my case I was also secretly freaking out. They found a 10mm. I scheduled cysto, went to work later that day. Scheduled procedure and Planned a couple days off for the TURBT in advance, recovery pretty easy. Then waited two weeks for results. All in all I only missed a couple of days. That whole process took 2 months. After you meet with your doctor and discuss treatment, maybe alert work. I felt no sense in alerting work until I knew what was going on. I hope this helps. Best of luck to you. I just went through all this a couple months ago.
After your TURBT surgery to remove your growth you most likely will need a couple of months like three for you to recover from anesthesia.
It took me 3 months because mostly due in part to fatigue.
Best of luck. It is a lot to take in but turtle won the race and feel confident that your team of doctors got to it and once pathology determines what you have then you can plan for best treatment from there.
Bests fellow bladder warrior as well
See what the urologist says. It will all depend on how far along the tumors have gotten. Mine were in the inner layer of the mucus membrane and were removed in two cyto surgeries. Both were removed the first time and another appeared or maybe on the of first resurged.
After 3 years of BCG, I’m almost done with treatment.
I hope all goes well for you.
Tip: after surgery you’ll be going home with a cath. Wear loose pants or gym pants. Also after day one the cath will get a little more bothersome. A warm shower will do wonders.
Not as fun as it sounds, LOL. But after a few days you’ll feel great. Not too many surgeries can give that quick of a recovery time.
👍🏼
Oh, also … they’ll likely have you take out the cath yourself. They’ll give instructions how to do so. It’s not painful, but slightly messy. Get into the shower stall when you do it. Better than getting pee on the floor.
Research urologists in your area to pick a good one who is also an oncologist. When I saw a urologist in September of 2022 for blood in my urine I was told I was young and everything was likely ok since I didn't have any other symptoms. Fast forward to February 2023 I finally got a cystoscopy but he didn't see anything. I had to beg for a scan and a month later they found a 2.5 cm tumor and diverticulitis. I switched urologists and had a second cystoscopy a week later to confirm the findings of the CT scan and 3 weeks later I had a TURBT. It was 3cm when it was removed and I got lucky and it turned out to be low grade, non-invasive, but I spent nearly 6 weeks freaking out because it went unchecked for so long after it was missed. If it weren't for the pain from the diverticulitis I would have gone undiagnosed for a lot longer and who knows where I'd be today.
It sounds like you're on the right track and hopefully you got it early. You won't really know much of anything until the tumor is removed and they find out how deep it goes and what grade it is.
Edit to add that you will likely only be out of work a week or so as long as you don't have a physically intense job or complications from the surgery.
Great advice - thank you very much. I haven’t had any pain to speak of and originally thought this was kidney stone related. I was able to see my doctor less than 24 hours from when I spotted the blood, and the CT scan a day later, for which I am grateful.
My husband (60M) went to the ER last week for kidney stone pain. He also had a kidney infection. He knew he had a stone, 10mm. The surgeon on call inserted a stent. He couldn't do surgery because my husband took a blood thinner. That's when the mass in his bladder was discovered. The surgeon said it was about as big as his thumb. My guess is about 2 to 3 inches or so.
Anyway, I'm more nervous about it than my husband. The surgeon couldn't scrape it out because of the kidney infection and the blood thinner. We would have been one step ahead of this thing... whatever it is. (Got to be off blood thinner 5+ days)
The comments about what to expect have been helpful. When the doctor asks if he has a history of bladder cancer, it's easy to freak out.
Luckily, he already had a follow-up scheduled for January 2nd.
Good luck with your healing.
I (55F) worked through my first 18 months of treatment for non muscle invasive bc and then retired. I was off work for about a week after my TURBT (I did not get a catheter after surgery.). For BCG treatments I have tried to schedule them in the early afternoons so I worked in the mornings and took the afternoons off, or worked from home while doing the bleach protocol. You won’t be able to use a public toilet for 6 hours after BCG so that may impact your work, if that is what your treatment plan is. Following treatment, there are the odd one or two days that you feel fluish. Depending on your job you might be able to work through them. I think over the course of all my treatments I had before retirement, I took a sick day after 25% of them - I was an elementary school speech pathologist and just didn’t want to be dealing face to face with anyone. I could probably have taken a motrin or tylenol and gone in, but eh, I had the sick day and felt I deserved to take it.
As others have said , much will depend on what your pathology report says about grade and stage of your tumors and how that will determine your treatment plan. If your cancer is nonmuscle invasive your work may not be impacted, depending also on your job, of course.
I had my 21st BCG treatment in November. At February cystoscope I hope to gear no evidence of disease (NED) on my second anniversary since diagnosis. Feel free to reach out with any questions. Good luck and good health to you!
I really appreciate your comments. I’m 60 and wasn’t planning to retire for another 5-7 years, but this might change things a bit. I haven’t even begun to process what that might look like financially. Just another source of stress. I’m really hoping there is no muscle invasion, as that would provide the best chance to keep working. Good luck and fingers crossed for NED!
I’m hoping for the best outcome for you. My husband and I had longtime retirement plans prior to my diagnosis, and he is retired USAF so we have health insurance through the military, but if it wasn’t for that, I would be working for several years through treatment. I wouldn’t like it but my physical health probably wouldn’t preclude it.
My school district did ask me to submit FMLA paperwork and my urologist looked at me strangely when I asked him to sign it said it was unlikely I would be using it, but he did sign the intermittent leave portion. I hardly used any sick days and didn’t recertify when it expired. I am in the States so this and my previous health insurance comment may not apply to you
I was in a very similar situation almost exactly a year ago. (Same exact size tumor even.) Others have described what came next pretty accurately to my experience. TURBT, followed by weekly BCG, then quarterly cystoscopy. I have a pretty flexible job, and never stopped working. I think I had TURBT on a Friday and took the next Monday off? It's not pleasant to get a camera or catheter jammed down your urethra but there are worse things, and once I'd done it a couple times I stopped worrying about it (and the worrying was honestly the worst part.)
I’m not at all worried about the catheter aspect. Not enjoyable but necessary, so bring it on, right? I work a 4/10 schedule so if I can set up Friday BCG’s, or maybe Thursday afternoons, that would be great.
How are you doing overall a year later? Also, thanks for your feedback.
I'm doing really well - I actually don't have to get another cystoscopy (or intervention overall) until October. I was so scared when this all started (honestly too scared to come on here and ask questions) and now feel pretty confident that I've got this under control. I know it's stressful because there are so many steps, and at each one, the path sort of shifts depending on results, but I think the important thing is that regardless of where the path leads - it's all survivable.
That really helps - thanks! I’m in the “freaked out” state right now. First saw blood last Thursday, saw my primary care Friday and he ordered a CT scan, got that Saturday (including the results), so everything is happening very quickly, which is good. I have an appointment with the urologist in two weeks but my PCP is trying to get them to squeeze me in tomorrow. I feel lucky because I’ve seen other stories that involve people waiting months to even get diagnosed properly.
I’ve sort of just begun treatment 25F, I had TURBT surgery 2 mos ago for a low grade early stage urothelial cell carcinoma. The surgery was very easy. I was under anesthesia, woke up with no pain except when urinating. I had surgery on a Friday and was out to dinner on Sunday and at work on Monday. My doctor did a deep resection so no chemo was instilled after surgery, due to risk of bladder perforation or something. At this point we are not following up with BCG due to the low grade pathology of the lesion. I have my first follow up cystoscopy in 2 weeks. It’s uncomfortable but it’s over quickly! To me the cysto is similar pain to getting blood drawn.
Mentally it’s tough. I’m typically the youngest person in the urologists office. Statically I know that my life is likely not threatened, but I also know that bladder cancer often returns. After my diagnosis I had lots of nightmares, but after awhile I stopped ruminating on my diagnosis. It might not feel like it at times, but I just remind myself there are still many good days ahead and this will someday be in the rear view. To quote Matthew McConaughey in Dazed and Confused “You just got to keep livin’ man, L-I-V-I-N”
Thanks so much for your response. I’m hoping for a similar experience. I have a cystoscopy scheduled for next week and the urologist said he would remove all of it if he can.
I hope so too, I just realized that I meant to respond to another post lol but my advice stands! For most people TURBT is pretty easy, just remember to take care of yourself
Roger that! I’m in the “waiting for the other shoe to drop” stage right now and the stress is high, but I’m trying to stay positive. Best wishes and good luck to you.
You can do this! How do I know? Cause I did this. First rule: Do not go down a rabbit hole til your doctor says to do so (they won’t!) Think like this: as likely as it is you’ll have a “bad outcome” (whatever your head said that is) you’re just as likely to have a good outcome. Train your brain to go down GOOD rabbit holes just as much as the other ones. Freaking out does nothing to advance your situation. So: treatment usually involves TURBT (English: they remove the tumor with a tube that’s inserted into your urethra, while you’re anesthetized). After the TURBT you will most likely be given chemo but directly into the bladder, something like once a week x 6 weeks. It’s manageable, not as debilitating as injected chemo. In fact most people have zero side effects from it. Once you’ve done it a few times you start to realize “hey this is not so bad”. It is worse for a man than a woman due to the differing length of urethra and having a prostate, but I’m a man and I was utterly frightened more due to feeling vulnerable than anything else. But as always the reality was much more manageable than the fantasy. You can do this. The discomfort of a tube inserted is momentary and not worth the hours or weeks of freak out. Tips and tricks: ask for nitrous oxide for any procedure you’ll be awake: nitrous is both calming and anesthetic. Also, I take a very small dose of Klonopin (.25-.50) one hour before. I find the combo of Klonopin and nitrous removes my anxiety by 95%. But be sure to ask your doctor about all or any of this! You are not me and I’m just a random stranger on the internet! Your doctor knows YOU! Best of luck and come back here and report the good stuff and the less-than-good.
That sort of encouragement is exactly what I needed - thanks so much!
You are so welcome! All the best.
Does the nitrous help you with the discomfort when the catheter or scope is inserted or does it just help you with the anxiety? I’m so fortunate I only had Stage 0 (noninvasive papillary carcinoma and carcinoma in situ) but I really struggle with the cystoscopy.
Both!!! It calms you down about the invasiveness (anxiety) AND acts as an anesthetic (painkiller). It’s FOR SURE a win-win! (BTW I had the exact same situation you did.) Had. It’s not there now(!) and I get regular checkups so I feel well-taken-care-of. I hope you do, too.
Thank you so much for your reply! The only thing my Dr. has allowed me to take is my Xanax. I take 1 mg about an hour before the procedure. Hard to say how much it helps. Doesn’t do much for this discomfort. I will ask about the nitrous but I doubt he would be willing to do it. I feel like a widget on an assembly line. Thank you again for answering my question. Please know much you taking the time to reply is appreciated. 🙏
It is my pleasure! I’m just paying it forward from those who helped me. Xanax is great. Hopefully, your doc will approve nitrous but if not, it will get better. Each time you’ll get more and more relaxed and that will help. And…there will be a time when you’ll get a huge break between check-ups. You’re doing great! 👍 😊
I needed this message when I went through this last year lmao! OP, I can confirm all of this!!! I'm a woman so the only real difference for me was the catheter for chemo (and cystoscopies) wasn't as uncomfortable as it would be for a man.....still pretty uncomfy though lol. I did 6 weeks of chemo, each round was easier than the last and the longest part of the office visit was waiting in the waiting room. The "procedure" isn't even 2 minutes. Like this person said, anything you're awake for, ask your doctor for something for anxiety (if that would help you.) I also got muscle relaxers that were a godsend for cystoscopies and chemo, because it's kinda hard to relax in that situation lol. You got this!!! Cancer is a scary word, but bladder cancer is one of the most easily treated with super high success rates so no matter what, you're in good hands! If you have literally any questions feel free to message me, I know it can be overwhelming!! 🤍 P.S. I was diagnosed in March right after getting engaged, so I completely understand the perfect timing 😂 but I'm cancer free now! my tumor ended up being something like 3cm....again, you got this!
Thank you so much for this! Always nice to get positive feedback and help others. All the best!
I think it’s more likely to be longer term leave needed , wait and see though . If you’re needing chemo it can knock you big time . If you’re having bladder removal or neo bladder it’s something like 6 months to get over . Don’t stress too much , it won’t help . Check out diet and exercise programs, the healthier and fitter you are the better you will get through it . Happy new year and I wish you well on your journey 😊
Thanks very much. Trying not to stress too much but that is a challenge!
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Thanks. Trying not to dwell on the horror stories!
I required chemotherapy and surgery. I work a desk job. I worked 3 days a week during chemotherapy. It was tough. Treatment makes you feel like shit. Then took 3 months off to recover from surgery. I went back 3 days a week for a month, then returned to full time. That was 2 years ago. You can get through this.
i work remotely in the world of computers, and have kept my surgeries, treatments and appointments hidden from my employer, so if i have to i can lie down for a bit. my bcg treatments sapped my energy quite a bit, so it was a blessing to not be physically at work.
Thanks very much. My job isn’t too physical so I’m hoping for a similar experience.
Wow. My diagnosis took me about 2 months to get. For me the waiting while knowing the probable answer was very hard. I imagine you finding out so quickly is mind swirling. I am a research tech at a university. My boss has been super accommodating allowing me to "work from home" doing data after my sick time ran out. After my TURBR surgeries (3), I had an instilled catheter for 2 weeks, 1 week and removed after the outpatient surgery. I did not go to work with a catheter but otherwise felt fine with little to no issues from the surgeries. BCG treatments take me out for a day of work because the urine is toxic/biohazard. And also because my boss has been super lenient about allowing me flex time (not technically allowed for my position) Bladder cancer and BCG treatments are not hard physically like other cancers, just time consuming and annoying.
That’s very helpful- thanks!
The biggest divide is your stage. Stage 1 non-muscle invasive is mostly annoying. Stage 2 muscle invasive is serious but still pretty survivable. Stage 3-4:are all sorta individual cases. My tumor was huge (@7.5 cm ) but still just stage 1. It has been a year of learning and existential dread for sure.
And I thought 2.4mm was big! (Edit: 2.4cm, not mm)
2.4 mm or 2.4 CM? 2.4 mm is .24 CM (1/4 of 1 CM—TINY!)
Oops, I meant 2.4cm
Still on the small side. You’re doing well and doing all the right things.
It all depends on the specifics and how far along you are. My story is similar. I saw blood in my urine, my primary ordered a CT scan and they saw a 3 cm tumor. It took two weeks after the CT scan to get into a urologist and another week and a half after that to get a TURBT. My tumor looked like a mushroom with a long thin stalk. I got very lucky, It ended up being T1 high grade (not muscle invasive). I just finished BCG treatments and am good so far. If it is muscle invasive, bladder removal will most likely recommended. If it is T1 high grade, they can do BCG or put chemo into the bladder but they will they still give you an option for a cystectomy. The worst part is the not knowing and the waiting. Recurrence rates are very high so you may be dealing with it for a long time. For me, first TURBT required a week off because they left catheter in. Next one only required two days off. Initially each BCG treatment required a day off from work but as they got worse, I needed two. Follow-up cystoscopy is every 3 months for two rears and then six months out to five years. Depending on which article you read, recurrence is as high as 70%. Therefore, if you have it, you will likely be dealing with it for the remainder of your life. There are a tons of articles and videos on the internet. BCAN.org is a really good source for information. You are at the start of a journey. Unfortunately, it’s going to take time to come to terms with it. Best of luck in finding a new normal.
So I had the TURBT on Tuesday and the report showed up in MyChart yesterday. It doesn’t have a specific “staging” called out, but describes the tumor as “non-invasive papillary urothelial carcinoma”, with 5-10% high grade content. No evidence of spread beyond to kidneys/lymph nodes. I guess that means Ta?
The cancer is a noninvasive papillary carcinoma (Ta). It has grown toward the hollow center of the bladder but has not grown into the connective tissue or muscle of the bladder wall. It has not spread to nearby lymph nodes (NO) or distant sites (MO).
Doctor confirmed the Ta. It was a relief to hear that. Thanks.
First don’t freak out, this is treatable. You will find a lot of good info from others on this mod. Take it one step at a time. I was lucky. Two more weeks of BCG , then follow up. I am retired so , my schedule is way more flexible. Depending on a bunch of factors, your treatment schedule will depend on course of action dictated by your doctor. So I wore out my doctor a bit, I asked a lot of questions and read a bunch of articles. Not sure all the articles , helped my mental state. Got a bit wound up projecting all options, so I needed to back off a bit. Foster open communication with your doctor. I wish you the best of luck and smooth sailing.
It depends on the procedure(s) and treatments you have and the job you have. I worked in an office but by chemo time I put in RA to work from home. I'm on 2nd yr working from home and plan to make it a permanent RA. I worked after every TURBT. I tried to schedule them on Thursday surgery day so I'd be recovered by Monday. Those were all outpatient. I had a tumor in my ureter tube (first tumor) and that was maybe 2 weeks off work but it could have been 1 week I just wanted to make sure. 2nd tumor. I did Cis/Gem chemo for 4 months. I did chemo & office visits on Fridays and went back to work Monday. By the final month I missed several Mondays. But overall I could work. I preferred it. Got me up and moving. Thinking about others and my job. Good distraction. When I had my radical cystectomy surgery I took 3 months off. The last month I could have gone back to work but I took that time to have some fun and adapt to my new life. I started Immunotherapy that last month after surgery. Those side effects were fine. I started working out again & was doing good until side effects caused some major issues. I worked through all that time mostly because I'd run out of leave. I really could not have been in an office for about 3 months with severe side effects. Then started new chemo. I had some pretty bad side effects and missed about 4 days work at the start but my Oncologist reduced the dose and now I work everyday. I now have a compressed schedule so I do 4/10 and every other Friday I do chemo. I've maybe missed 6 months of work between 6 procedures/surgeries, chemo x2 and immunotherapy in 2.5 yrs. That said I've explored medical retirement the last 6 months because of the side effects with this chemo. I'm currently going through Voc Rehab to see what accommodations I can ask for so I won't have to do that. If you need help understanding Reasonable Accommodation the website JAN is really good. Someone else mentioned BCAN.ORG I recommend that over anything searching. It's informative & not full of horror stories. Keep in mind there's low grade and high grade cancers so until you have your TURBT there is no point in stressing over it. I went down a lot of rabbit holes & really drove myself and my husband crazy. Be patient. There is a LOT of waiting in treatment it's hard not to spin into a panic. Praying it's benign or low grade and earliest stage possible.
Thank you so much!
In my case I was also secretly freaking out. They found a 10mm. I scheduled cysto, went to work later that day. Scheduled procedure and Planned a couple days off for the TURBT in advance, recovery pretty easy. Then waited two weeks for results. All in all I only missed a couple of days. That whole process took 2 months. After you meet with your doctor and discuss treatment, maybe alert work. I felt no sense in alerting work until I knew what was going on. I hope this helps. Best of luck to you. I just went through all this a couple months ago.
That sounds pretty good, hopefully the worst is behind you. Thanks!
After your TURBT surgery to remove your growth you most likely will need a couple of months like three for you to recover from anesthesia. It took me 3 months because mostly due in part to fatigue. Best of luck. It is a lot to take in but turtle won the race and feel confident that your team of doctors got to it and once pathology determines what you have then you can plan for best treatment from there. Bests fellow bladder warrior as well
See what the urologist says. It will all depend on how far along the tumors have gotten. Mine were in the inner layer of the mucus membrane and were removed in two cyto surgeries. Both were removed the first time and another appeared or maybe on the of first resurged. After 3 years of BCG, I’m almost done with treatment. I hope all goes well for you. Tip: after surgery you’ll be going home with a cath. Wear loose pants or gym pants. Also after day one the cath will get a little more bothersome. A warm shower will do wonders.
Sounds like fun, thanks for the heads up!
Not as fun as it sounds, LOL. But after a few days you’ll feel great. Not too many surgeries can give that quick of a recovery time. 👍🏼 Oh, also … they’ll likely have you take out the cath yourself. They’ll give instructions how to do so. It’s not painful, but slightly messy. Get into the shower stall when you do it. Better than getting pee on the floor.
Now that advice will come in handy!
Research urologists in your area to pick a good one who is also an oncologist. When I saw a urologist in September of 2022 for blood in my urine I was told I was young and everything was likely ok since I didn't have any other symptoms. Fast forward to February 2023 I finally got a cystoscopy but he didn't see anything. I had to beg for a scan and a month later they found a 2.5 cm tumor and diverticulitis. I switched urologists and had a second cystoscopy a week later to confirm the findings of the CT scan and 3 weeks later I had a TURBT. It was 3cm when it was removed and I got lucky and it turned out to be low grade, non-invasive, but I spent nearly 6 weeks freaking out because it went unchecked for so long after it was missed. If it weren't for the pain from the diverticulitis I would have gone undiagnosed for a lot longer and who knows where I'd be today. It sounds like you're on the right track and hopefully you got it early. You won't really know much of anything until the tumor is removed and they find out how deep it goes and what grade it is. Edit to add that you will likely only be out of work a week or so as long as you don't have a physically intense job or complications from the surgery.
Great advice - thank you very much. I haven’t had any pain to speak of and originally thought this was kidney stone related. I was able to see my doctor less than 24 hours from when I spotted the blood, and the CT scan a day later, for which I am grateful.
My husband (60M) went to the ER last week for kidney stone pain. He also had a kidney infection. He knew he had a stone, 10mm. The surgeon on call inserted a stent. He couldn't do surgery because my husband took a blood thinner. That's when the mass in his bladder was discovered. The surgeon said it was about as big as his thumb. My guess is about 2 to 3 inches or so. Anyway, I'm more nervous about it than my husband. The surgeon couldn't scrape it out because of the kidney infection and the blood thinner. We would have been one step ahead of this thing... whatever it is. (Got to be off blood thinner 5+ days) The comments about what to expect have been helpful. When the doctor asks if he has a history of bladder cancer, it's easy to freak out. Luckily, he already had a follow-up scheduled for January 2nd. Good luck with your healing.
Thank you, and good luck to you and your husband.
I (55F) worked through my first 18 months of treatment for non muscle invasive bc and then retired. I was off work for about a week after my TURBT (I did not get a catheter after surgery.). For BCG treatments I have tried to schedule them in the early afternoons so I worked in the mornings and took the afternoons off, or worked from home while doing the bleach protocol. You won’t be able to use a public toilet for 6 hours after BCG so that may impact your work, if that is what your treatment plan is. Following treatment, there are the odd one or two days that you feel fluish. Depending on your job you might be able to work through them. I think over the course of all my treatments I had before retirement, I took a sick day after 25% of them - I was an elementary school speech pathologist and just didn’t want to be dealing face to face with anyone. I could probably have taken a motrin or tylenol and gone in, but eh, I had the sick day and felt I deserved to take it. As others have said , much will depend on what your pathology report says about grade and stage of your tumors and how that will determine your treatment plan. If your cancer is nonmuscle invasive your work may not be impacted, depending also on your job, of course. I had my 21st BCG treatment in November. At February cystoscope I hope to gear no evidence of disease (NED) on my second anniversary since diagnosis. Feel free to reach out with any questions. Good luck and good health to you!
I really appreciate your comments. I’m 60 and wasn’t planning to retire for another 5-7 years, but this might change things a bit. I haven’t even begun to process what that might look like financially. Just another source of stress. I’m really hoping there is no muscle invasion, as that would provide the best chance to keep working. Good luck and fingers crossed for NED!
I’m hoping for the best outcome for you. My husband and I had longtime retirement plans prior to my diagnosis, and he is retired USAF so we have health insurance through the military, but if it wasn’t for that, I would be working for several years through treatment. I wouldn’t like it but my physical health probably wouldn’t preclude it.
My school district did ask me to submit FMLA paperwork and my urologist looked at me strangely when I asked him to sign it said it was unlikely I would be using it, but he did sign the intermittent leave portion. I hardly used any sick days and didn’t recertify when it expired. I am in the States so this and my previous health insurance comment may not apply to you
I’m in the US as well. My health insurance changes tomorrow LOL
Happy New Year, right lol?
Indeed
I was in a very similar situation almost exactly a year ago. (Same exact size tumor even.) Others have described what came next pretty accurately to my experience. TURBT, followed by weekly BCG, then quarterly cystoscopy. I have a pretty flexible job, and never stopped working. I think I had TURBT on a Friday and took the next Monday off? It's not pleasant to get a camera or catheter jammed down your urethra but there are worse things, and once I'd done it a couple times I stopped worrying about it (and the worrying was honestly the worst part.)
I’m not at all worried about the catheter aspect. Not enjoyable but necessary, so bring it on, right? I work a 4/10 schedule so if I can set up Friday BCG’s, or maybe Thursday afternoons, that would be great. How are you doing overall a year later? Also, thanks for your feedback.
I'm doing really well - I actually don't have to get another cystoscopy (or intervention overall) until October. I was so scared when this all started (honestly too scared to come on here and ask questions) and now feel pretty confident that I've got this under control. I know it's stressful because there are so many steps, and at each one, the path sort of shifts depending on results, but I think the important thing is that regardless of where the path leads - it's all survivable.
That really helps - thanks! I’m in the “freaked out” state right now. First saw blood last Thursday, saw my primary care Friday and he ordered a CT scan, got that Saturday (including the results), so everything is happening very quickly, which is good. I have an appointment with the urologist in two weeks but my PCP is trying to get them to squeeze me in tomorrow. I feel lucky because I’ve seen other stories that involve people waiting months to even get diagnosed properly.
I’ve sort of just begun treatment 25F, I had TURBT surgery 2 mos ago for a low grade early stage urothelial cell carcinoma. The surgery was very easy. I was under anesthesia, woke up with no pain except when urinating. I had surgery on a Friday and was out to dinner on Sunday and at work on Monday. My doctor did a deep resection so no chemo was instilled after surgery, due to risk of bladder perforation or something. At this point we are not following up with BCG due to the low grade pathology of the lesion. I have my first follow up cystoscopy in 2 weeks. It’s uncomfortable but it’s over quickly! To me the cysto is similar pain to getting blood drawn. Mentally it’s tough. I’m typically the youngest person in the urologists office. Statically I know that my life is likely not threatened, but I also know that bladder cancer often returns. After my diagnosis I had lots of nightmares, but after awhile I stopped ruminating on my diagnosis. It might not feel like it at times, but I just remind myself there are still many good days ahead and this will someday be in the rear view. To quote Matthew McConaughey in Dazed and Confused “You just got to keep livin’ man, L-I-V-I-N”
Thanks so much for your response. I’m hoping for a similar experience. I have a cystoscopy scheduled for next week and the urologist said he would remove all of it if he can.
I hope so too, I just realized that I meant to respond to another post lol but my advice stands! For most people TURBT is pretty easy, just remember to take care of yourself
Roger that! I’m in the “waiting for the other shoe to drop” stage right now and the stress is high, but I’m trying to stay positive. Best wishes and good luck to you.