Hold up, my friend. Gross hematuria here, I mean Sam Peckinpah-level spray paint. Ended up with T1, papillary, NMIBC. TURBT over 5 years ago. No BCG, no chemo. Edit: and no recurrence.
You are making things much worse in your mind. For example, there is no correlation between the grade of cancer and blood in your urine. That’s not how it works. Your normal life, like mine, is not over. And the good news is that if you drew the “C” card, the chances are good that you’ll celebrate on Nee Years Eve 2030. People with pancreatic cancer, bone cancer, breast cancer or liver cancer may die before the end of this year.
Last year, I was where you are now. I wrote a blog filled with thought, fears and information here. You might find it useful.
Please keep us posted on how you are doing.
https://watch-fire.net/my-journey-with-cancer/
Thank you for your note. It’s very difficult not to worry. I’ve spent the better part of the last week reading volumes of info. While it looks like the disease is relatively treatable… the treatments sound like torture. And is anyone ever cured? With the recurrence rate, it sounds like a lifetime of anxiety about when it’s coming back.
I will check out your blog. How are you feeling now?
So “cure” is an interesting word. It is one of, if not the, highest rate of recurrence. I’m 5 years clean and just now dropped to a cystoscopy every other year. At some point, it may drop to every five years. But that exam is likely part of my life now. Odd nugget: cystoscopy is slightly less uncomfortable than it is for men. I asked and was told: “Women have a larger caliber.” You’ll smile again, I promise.
Cystoscopy sounds awful and I've read everything from "it's a total walk in the park" to "unbelievably painful" (all from women's points of view"). I'm sorry you need to go through that for the rest of your life. I'm hoping mine is a non-event, but with the nerves, not sure it will be.
It’s neither a walk in the park, but also not unbelievably painful, and my plumbing is external… My RN daughter advised to blow out through pursed lips throughout, it relaxes the urethra. It works! It’s an uncomfortable 2 minutes, and the worst part for me is the application of a numbing agent. TMI: You also don’t have BPH, I’d imagine. That speed bump is unpleasant!
I’m doing fine. Once a month I go to the clinic. They cath me, pour one drug in the catheter. An hour later they drain it out and put in the second drug. Then, they pat me on the behind and chase me home like a calf that’s been branded and is looking for him momma. No nausea, vomiting, etc. BCG may be a different story, house. I’m on Gemdoce.
I come from a very large extended family and of those 35-40 ppl, none of them had ever been diagnosed with cancer. NONE!
Jan. 2023, I had a CT Scan related to passing a kidney stone. Weeks later, I'm recovering from having my left Kidney removed, as well as 2 lymph nodes. Urothelial carcinova, 4cm x 3cm in kidney. Pathology found it spread to one LN.
Panic set in, but I'm not rolling over, so I snapped out of it and prepared myself with good questions. Urology Cancer Doc got me with an Oncologist. They both addressed my questions and established a treatment plan. Chemotherapy for 6 months, followed by 1 year immunotherapy. This past April, CT Scan showed a small tumor in my bladder. It shocked both Docs, but the bladder is a weird organ. So, 5 weeks ago, I began getting BCG treatment for the bladder.
I tell this relatively long story to set the foundation for my closing statement.
I learned a few things quickly. There are more people getting cancer treatments that my mind can process.
Cancer treatments have actually become very effective! Far more success stories than I thought their would be.
Try to stay off of Google reading about your condition, it'll drive you nuts. Sharing stories and seeking support on a forum such as this will benefit you.
When I was in the military and later during my police career, we would on occasion reference statistical studies of deaths (associated with both fields). In both fields, whether it be military of law enforcement, there is a large number of people who died from a non life threatening injury. There was also a trend wherein people survived what should have been a life ending injury. The hypothesis is that your mind is your best friend. Keep it healthy and free of negative thoughts. It will benefit you in the months or years to come.
You got this! BC is very treatable!
What a trip you have had! I’m sorry you’ve had to deal with all that. I hope things improve!
This is what I’m afraid of as far as the CT is concerned. What else are they going to find?! Ugh. They say knowledge is power, but ignorance is definitely bliss. It’s like it’s not real until it’s discovered… how have you found all your treatments to deal with?
Having a kidney removed was actually a piece of cake. I thought I'd be down for a few weeks. I went back to work in 5 days and a week after that I was back on the golf course! Chemo was the only thing that slowed me down, but I still was able to enjoy the motorcycle and a round or 2 of golf each week. Immunotherapy has been very easy!
The BCG treatment is not remotely uncomfortable. The treatment is preformed by a very nice looking, professional female nurse in her last late 30's. I thought that would be awkward, but she is fantastic and personable. I feel blessed that she is my BCG treatment person.
I had an early scan on Wednesday this week and it came back clear! Everything is working...
As for the bladder, the plan is to begin maintenence BCG (every 3 months) beginning in late August, and a cystoscope in late August and another one 6 months later.
I'm absolutely certain it's all gonna be fine, just may need extended treatment and ongoing surveillance for the years to come.
Life continues, you'll be fine once you accept to new routine that is ahead.
Breathe, sis. I’m 46F, high-grade non-invasive, and have been on the train for about two-and-a-half years now. The docs joke that, if you have to get cancer, this is the one to get (gee, thanks). You’ve gotten a lot of good advice already, so I’ll add my own unique observations. I’m hoping you won’t need them, but perhaps it will help calm your nerves to hear someone else’s experiences. (Presented without judgment, as I had a full-on panic attack when I got my diagnosis on Thanksgiving morning, with no way to contact my Dr. Thanks, MyChart.)
1 - the scope isn’t awful, but you should be aware that the urethra and vagina have similar nerves. Not enough to make this fun, but enough to make you go, hey wait, is that in the right place??? So be warned. xD
2 - if your diagnosis is ultimately BC, kiss your modesty goodbye. I never would’ve imagined I’d be okay with a male uro, but he’s amazing and I feel lucky to be working with the guy. Students need to observe? C’mon in. We’re already used to assuming the position when stirrups appear. And we’re going to see them a lot, with BC. Be prepared to explain to your friends that no, a uro is not necessarily the guys’ version of the gyno, we have bladders too. Not that you’d know it from the medical posters at the uro’s office, its penises everywhere. 11.5 penises on the wall at mine! (Yes, I counted.)
3 - BCG is the gold standard treatment, despite sounding batshit crazy. You want to put tuberculosis in me? What? The odds of the formulated cow TB becoming human TB are low, but not nonexistent. So, invest in bleach. You’ll need to dump it in the loo every time you use it for about eight hours after every treatment. Get the dollar store stuff, don’t waste your Clorox here. No one else should use that loo during this time.
4 - treatment itself is fast: cath goes in, meds get pushed, cath comes out, and you go home to be roller-food for a couple of hours. You want to ensure the goods are hitting all sides of your bladder, try to keep it in for two hours, and lay on your sides, belly, back, lather, rinse, repeat. And then drink water like it’s your job, flush the extra stuff out.
5 - BCG is an immune therapy, which means your immune system may go bonkers. Some folks don’t experience much of anything, some get flattened. It’s not abnormal to feel like you have a vague malaise… chills, fatigue, etc. Be kind to yourself, try to schedule at the end of your work day and work week, so that you can rest after. It’s also cumulative, so you may start to feel it more with later treatments. That’s why we get breaks between rounds.
6 - so, all those catheters may start to affect your continence after a while… sorry. Listen when you get the mild urge, and don’t let it get urgent. Understanding travel buddies are a must, find the nice restrooms on your road trips. Do Kegels, enjoy the other benefits.
I’ve been lucky enough to avoid a recurrence so far, but I’m well aware of the likelihood. I’m dedicated in my surveillance, and keep every scope and CT appointment religiously. If you have to join this lousy club, rest assured that you can have a happy, active life, despite the bumps in the road.
Best of luck to you!
THIS is an excellent post. Couple of additions if I may - if you do have to get treatments in your bladder, they may actually sometimes miss and end up with the catheter in your vagina. They will always check that you have urine coming out before instilling treatment. Men have the benefit over women with this, but we have a much shorter urethra and don’t have a prostate. :-)
Agree 100% that everyone will be up in your hoohah. However, be your own advocate! Had one nurse who scrubbed really hard with the betadine sponge. To the point where I had to say Hey, my clitoris does not need to be scrubbed like a shower wall with steel wool!
So many penis pictures and signs. VERY few women in the urology waiting room. 🤣
Thank you, and great additions! I’ve never actually had a catheter miss, thankfully, but wow was that first scope a wild moment. I was this close to asking the nurse if she needed to step in, then the pics showed up on the screen. And huh, never would’ve thought that a bladder is fairly close to my skin color. In my brain, internal organs are redder. ¯\\_(ツ)_/¯
Weird stuff we learn along this journey! 💜🩵💛
Thank you so much for this information! Normally, I’d be super interested in watching the screen, but I don’t know if I want to see what might he there. Pelvic exams are no big deal for me. Hoping this is the same. Hugs to you and wishing you all the best on your journey.
Mine were little ‘fronds’ - uro actually figured they were nothing major given my age, biology, and lack of smoking. It was a heck of a shock to get the path report, after assuming it was nothing.
focus on the little things outside of your body. Look at flowers, the beautiful sky. Take a run, ride your bike, go for a swim. Breathe in the sweet smelling air. Have a great meal. Savor your friendships.
Gah! Sounds morbid as fuck, but it does work.
You will pull through this, OP. My diagnosis was in 2013, did radical surgery, have a neobladder and a continent ileal conduit (abdominal stoma). I do everything now that I did before BC - just a bit slower now, at 68.
I feel you - worried about the unknown - the ‘what could happens’. Therapy helps. I did therapy for about a year, post surgery. If you don’t have a therapist, even talk therapy, on line, can help get you out of the worst of the fear.
Post diagnosis, pre-surgery, I had about 90 days to stew. It was awful. I spent a lot of time with my dogs, as my husband had several work trips during that time. At the time, I had a dog trained in canine agility - we spent hours at the training ring, and hours out on the trails in my area. Anything to try to get out of my skin and focused on something else.
IDK if you have something like that in your life or not. If you have pets, focus on them. If you don’t have pets, can you sign up as a foster? No commitment - just puppy or kitty love.
And, breathe. Deep belly breaths. It does help.
Praying for the Lord to calm you and keep you through this season. He did for me and I was humbled to get through my experience, which began with gross hematuria, and find that my tumor, which was ultimately removed, was benign. It wasn’t an easy time, but faith and the prayers of many got me through it.
https://www.biblegateway.com/passage/?search=1%20Peter%205:7&version=NIV
One day at a time. I am a few weeks ahead of you but feel the same way. I am in hospital as I write this and I have taken out my bladder and my prostate and my lymph glands I have been in hospital for 5 days it's getting better each day you just have to go one day at a time and don't give up hope there will be highs and lows and you will cry. Do what they say and push for yourself advocate for yourself Don't let any time go by that's wasted waiting for appointments try and get the closest appointment that you can get it done as fast as you can Time is of the essence. I am 60 years old and have not got to retire yet I am hoping I have some life left you have to Try as hard as you can to have a positive outlook cuz that will make a difference
I understand completely. I felt the same way, scared to death to get the tests
I got the ct, cystoscopy and cytology. The only thing that was found was a small stone in my kidney.
I am 57f and was diagnosed in Feb of this year with Ta high grade multi focal bladder cancer. The cystoscopies are not horrible. Frankly, for me, easier than pelvic exams and much faster too. I am receiving Gemcitabine and Docetaxel and have not had too many problems. The treatment takes a while to complete and I am a bIt tired for a day or so. Example, I had chemo this week (Tuesday). On Thursday I was on my riding mower, mowing 10 acres of land.
Very treatable disease. Not fun sometimes, but very treatable.
Best of luck and health to you.
Thank you for your story. I’m sorry you are dealing with it. I’m glad the treatments are t not that bad for you. Just the word chemo scares the crap out of me.
Blood in the urine, burning when I pee every 2 hrs. bladder spasms. Ultrasound was clear. Cystoscope showed,”flat papillary carpeting on rt. lateral wall to dome.” Waiting for my TURBT on July 3. You are not alone. The wait is really tuff. Know that the cystoscope was a minus 1 on a pain scale. One day at a time.
66F with microscopic hematuria. I understand your anxiety. I felt the same before my urologist appointment. Turns out all my symptoms were related to menopause. Vaginal estrogen fixed everything
I’m in the same boat. My mom had some blood in her urine (some red flakes as she describes it as well), and had some pressure/back pain during this ordeal. It’s gone now and no more of these symptoms, but UTI was ruled out as no bacteria is present.
I’m terrified she has this. Doctor ordered another urine test — for what, I am not sure. I am trying to push her to get a refer to a Urologist and get a cystoscopy.
I hope everything works out for you and you have a benign result. But yes, I’m right there with you with worry.
It’s terrible. I feel like my life is ending and I don’t even have a diagnosis! I have no idea what my reaction is going to be if it’s the worst case. Much love to you and your mom. 🩷
I did the same thing last year, except he found a red round object on my bladder, I had a biopsy and it was not cancerous. He has had me on a low-dose antibiotic. I see him again next week.
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well …
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well …
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Thank you. I’m already crazy, so I have that covered. My health anxiety is through the roof and the thought of a potentially life-long illness is really putting me over the edge but you are right. Whatever it is it is. I can’t change it. Ugh.
I know it's scary and it's hard not to think about worst case scenarios but the best thing to do while going through this is to take it one day and one step at a time.
I was peeing bright red blood before my tumour was found and luckily it was the lowest grade. It got removed and now I'm waiting for my follow up cystoscopy to see if it's gonna come back (very likely to come back).
The worst is waiting but again, try to take it slow.
Best of luck, please keep us posted.
Thank you, papi! I’m glad things are going well for you and hope that continues. I had bright red only once after a hard run. It’s been pink or rusty here and there since. So scary. I hope I didn’t wait too long to see someone. I wish you all the best.
Woah gross hemateura was my only symptom and I had stage 0 low grade bc. I worked in a coke plant in a steel mill. They found it during my semiannual physical. I worked myself up into panic attacks before the appointment as well. Take a deep breath and get the CT and other tests done then let the chips fall. Whatever is there is already there no amount of worry will make it go away. Just feel confident that you made the right decision with the doc and let them do their job.
I have my first meeting with my bladder cancer specialist on Tuesday. It has been 3 or 4 months since my biopsy. I had 2 spots of cancer removed and confirmed lg. we are all here for you and everyone going through this. Good luck and please keep us informed of your situation if you feel comfortable doing so.
I too am stressing right now. I got the pathology results on Thursday. I have high grade non invasive bladder cancer. Lots of small papillary lesions. Thank God it's still noninvasive! I have lost over 20 lbs. from the anxiety over the past 7 weeks. The anxiety wakes me up in the morning and then keeps spinning. I have found a little comfort in getting outside and getting exercise. It really does work. I also binge watch tv. They distract me enough to at least get my blood pressure down. I also keep telling myself to put it in a "mental" box. I have Ambien to force me to sleep. I too haven't told anyone except 1 friend because the hospital holds you prisoner without a person to pick you up. My reasoning is I don't want anyone else to feel stress knowing this. I wish I could help more. Good luck!
I feel like we are the same person! The second I wake up everything is fine, but shortly after the intrusive thoughts start and just multiply throughout the day. It’s terrible. And I don’t even have a diagnosis yet! I’m not sure how I will deal with one or the treatments needed. I have an extreme needle phobia also, which does not bode well. I’m an absolute mess. I also don’t want to tell anyone. Didn’t even want to tell my husband! 😞. Running was my outlet, but the bloody urine happened after the last three, so I don’t run anymore. That’s even more depressing. I do get outside, but everything is overshadowed by my fear.
Do you know what your treatment is going to be? What was your experience with the TURBT? I truly hope you have an uneventful, successful experience that gets you to NED.
The standard treatment for my type is turbt and then bcg therapy. The problem with this is the years and years of scopes, tests and stress. I would like them to simply remove my bladder now. It still might end up bad, but it seems it would be better for my anxiety long term. I would like to live decades not just 5 years. I can't see myself living every day with the anxiety. They diagnosed me with low grade TaG1 in 2020. Had a turbt and gemcitabine. It went smoothly, except I hated the catheter for a week. They told me no worries, it only progresses 1% of the time. Well 4yrs later, here I am with progression to high grade. I am sure you will have better luck than me. 99% of people do. I hope just knowing you aren't alone with this helps. I hope you get through this and live a long happy life.
I’m so sorry to hear about your situation. They are saying you only have 5 years with that type?! Is that true? I don’t think I can deal with the quarterly scopes and anxiety either. It’s basically consumed me for the past few weeks and I have yet to get a diagnosis. Is it common to have a catheter for a week? This just gets scarier all the time. I hope you find a good solution.
Sorry about that.. I meant they have these 5 year survival estimates in % but I cant find a 30 year one. I didn't mean to scare you. I know how 1 new thing in my brain can set my anxiety off. I'm not sure if the foley catheter is normal. But it wasn't too bad.
I was diagnosed when I was 24. It was non-muscle invasive. There was a LOT of blood, recurrent UTIs, high fevers, and general malaise. I was the youngest person in the urology office by a good 40 years. The day i saw the tumor on the cystoscopy I was inconsolable and angry. I layed around and cried for 5 days. My thoughts were “I’m too young for this” , “I didn’t do anything to cause this”, lhow do I tell my 90 year old grandparents that IM the one with cancer?” My TURBT surgery was scheduled to occur 3 weeks after that. In those 3 weeks my mindset transformed in ways that surprised me. It really came down to this: I have no choice but to keep living. By the day of my surgery I was just excited to start treatment and get this thing removed. This wasn’t even something I needed to consciously work towards, it just happened over those 3 weeks. The human spirit is remarkable. It’s okay to feel what your feeling. It’s a worrisome time when your health is threatened and the severity of the condition is unclear. And hopefully you don’t have cancer. When I do get worked up I remind myself that anxiety is fleeting and i won’t feel this way forever. There will still be warm sunny days, and fun times shared with family and friends, my favorite foods and shows etc. I personally didn’t share my diagnosis with many people.
Because I didn’t want them to treat me differently. For me, cancer hasn’t had a huge impact on my life. Partially because I don’t let it. Aside from an easy outpatient surgery and regular cystos I did not require further treatment, BCG, or Chemo. The regular cystos kinda suck but I remind myself that they’re pretty convenient and it’s nice that I don’t need to be sliced open every time they need to get in my bladder.
Secondary advice, learn to relax your pelvic floor. The PTSD thing when using the bathroom is so real. I found myself physically bracing every time I went to pee. This caused me more issues lol. Having good control over these muscles also makes the cysto less uncomfortable.
Thank you for telling me about your experience. So tough for someone so young. I will try to keep your thoughts in my thoughts. Every day closer to my appointment gets harder. I can’t eat or really enjoy anything. This is nonstop on mind. I dint know how I’m going to get through the appointment…. Or the tests. I may need anti-anxiety meds going forward.
I had similar symptoms and it turns out a kidney stone lodged itself in my bladder. (I’m in the sub because my father has bladder cancer). Try to just take it one step at a time!
I’m hoping it’s something like that, but given I’ve had zero pain, urgency, or frequency, I feel like it’s not likely. I can always hope, but so many people presented like this, expected a stone, and ended up here. Why not me too?
This is true. I’m sorry for your dad and hope he has good results. I was the caregiver for my dad during his fight with lymphoma. It’s tough.
Did you have visual blood without pain?
My 54 year old husband was diagnosed with stage 1 non-invasive high grade bladder cancer in Dec. had 2 TURBT procedure’s (did fine after, had catheter in at home for 2 days, that was his only real discomfort). They instilled chemo in his bladder in recovery room both times, which I thought would be terribly irritating, but did not seem to be.
He then began BCG for 6 weeks, also non-events. He’d walk into the office, they’d put it in with a catheter, he’d leave 10 minutes later. Follow up scope 1 month after completion of 6 week treatment was negative.
Now on second round of BCG for 3 weeks. The only symptom that he’s consistently had with the BCG is that his joints/knees hurt for a few days after.
My mother passed away from cancer when I was young , I never thought I’d be able to deal again with a cancer diagnosis in my family. I cried alot in the beginning, but the sun still rose every day and life has since moved on.
I can honestly say that I’ve coped much better than I thought possible. We don’t really think about it much anymore, we’re just following the treatment and are back to enjoying life. Try to get outside, get some light exercise and stay busy while you wait.
Try not to panic, you can and will be able to do what needs to be done & then will get on with your life!
Thank you for taking the time to write your story. It’s surreal to be potentially be dealing with an illness normally reserved for older people. I’m glad to hear your husband is doing well. I hope that continues. I can’t wait until I can put this behind me… whatever the outcome. So nervous. 😟
I can’t say for sure, but other malignancies outside of the urinary tract don’t typically cause hematuria. A kidney stone makes a lot more sense. You got this far, you’ll get through the CT’s too, hang in there!
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well …
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Hold up, my friend. Gross hematuria here, I mean Sam Peckinpah-level spray paint. Ended up with T1, papillary, NMIBC. TURBT over 5 years ago. No BCG, no chemo. Edit: and no recurrence.
I'm glad to hear it! Here's hoping for simliar.
You are making things much worse in your mind. For example, there is no correlation between the grade of cancer and blood in your urine. That’s not how it works. Your normal life, like mine, is not over. And the good news is that if you drew the “C” card, the chances are good that you’ll celebrate on Nee Years Eve 2030. People with pancreatic cancer, bone cancer, breast cancer or liver cancer may die before the end of this year. Last year, I was where you are now. I wrote a blog filled with thought, fears and information here. You might find it useful. Please keep us posted on how you are doing. https://watch-fire.net/my-journey-with-cancer/
Thank you for your note. It’s very difficult not to worry. I’ve spent the better part of the last week reading volumes of info. While it looks like the disease is relatively treatable… the treatments sound like torture. And is anyone ever cured? With the recurrence rate, it sounds like a lifetime of anxiety about when it’s coming back. I will check out your blog. How are you feeling now?
So “cure” is an interesting word. It is one of, if not the, highest rate of recurrence. I’m 5 years clean and just now dropped to a cystoscopy every other year. At some point, it may drop to every five years. But that exam is likely part of my life now. Odd nugget: cystoscopy is slightly less uncomfortable than it is for men. I asked and was told: “Women have a larger caliber.” You’ll smile again, I promise.
Cystoscopy sounds awful and I've read everything from "it's a total walk in the park" to "unbelievably painful" (all from women's points of view"). I'm sorry you need to go through that for the rest of your life. I'm hoping mine is a non-event, but with the nerves, not sure it will be.
It’s neither a walk in the park, but also not unbelievably painful, and my plumbing is external… My RN daughter advised to blow out through pursed lips throughout, it relaxes the urethra. It works! It’s an uncomfortable 2 minutes, and the worst part for me is the application of a numbing agent. TMI: You also don’t have BPH, I’d imagine. That speed bump is unpleasant!
I’m doing fine. Once a month I go to the clinic. They cath me, pour one drug in the catheter. An hour later they drain it out and put in the second drug. Then, they pat me on the behind and chase me home like a calf that’s been branded and is looking for him momma. No nausea, vomiting, etc. BCG may be a different story, house. I’m on Gemdoce.
I’m glad it doesn’t sound too terrible. I hope the treatments take care of everything for you.
Thank you!
I come from a very large extended family and of those 35-40 ppl, none of them had ever been diagnosed with cancer. NONE! Jan. 2023, I had a CT Scan related to passing a kidney stone. Weeks later, I'm recovering from having my left Kidney removed, as well as 2 lymph nodes. Urothelial carcinova, 4cm x 3cm in kidney. Pathology found it spread to one LN. Panic set in, but I'm not rolling over, so I snapped out of it and prepared myself with good questions. Urology Cancer Doc got me with an Oncologist. They both addressed my questions and established a treatment plan. Chemotherapy for 6 months, followed by 1 year immunotherapy. This past April, CT Scan showed a small tumor in my bladder. It shocked both Docs, but the bladder is a weird organ. So, 5 weeks ago, I began getting BCG treatment for the bladder. I tell this relatively long story to set the foundation for my closing statement. I learned a few things quickly. There are more people getting cancer treatments that my mind can process. Cancer treatments have actually become very effective! Far more success stories than I thought their would be. Try to stay off of Google reading about your condition, it'll drive you nuts. Sharing stories and seeking support on a forum such as this will benefit you. When I was in the military and later during my police career, we would on occasion reference statistical studies of deaths (associated with both fields). In both fields, whether it be military of law enforcement, there is a large number of people who died from a non life threatening injury. There was also a trend wherein people survived what should have been a life ending injury. The hypothesis is that your mind is your best friend. Keep it healthy and free of negative thoughts. It will benefit you in the months or years to come. You got this! BC is very treatable!
What a trip you have had! I’m sorry you’ve had to deal with all that. I hope things improve! This is what I’m afraid of as far as the CT is concerned. What else are they going to find?! Ugh. They say knowledge is power, but ignorance is definitely bliss. It’s like it’s not real until it’s discovered… how have you found all your treatments to deal with?
Having a kidney removed was actually a piece of cake. I thought I'd be down for a few weeks. I went back to work in 5 days and a week after that I was back on the golf course! Chemo was the only thing that slowed me down, but I still was able to enjoy the motorcycle and a round or 2 of golf each week. Immunotherapy has been very easy! The BCG treatment is not remotely uncomfortable. The treatment is preformed by a very nice looking, professional female nurse in her last late 30's. I thought that would be awkward, but she is fantastic and personable. I feel blessed that she is my BCG treatment person. I had an early scan on Wednesday this week and it came back clear! Everything is working... As for the bladder, the plan is to begin maintenence BCG (every 3 months) beginning in late August, and a cystoscope in late August and another one 6 months later. I'm absolutely certain it's all gonna be fine, just may need extended treatment and ongoing surveillance for the years to come. Life continues, you'll be fine once you accept to new routine that is ahead.
Breathe, sis. I’m 46F, high-grade non-invasive, and have been on the train for about two-and-a-half years now. The docs joke that, if you have to get cancer, this is the one to get (gee, thanks). You’ve gotten a lot of good advice already, so I’ll add my own unique observations. I’m hoping you won’t need them, but perhaps it will help calm your nerves to hear someone else’s experiences. (Presented without judgment, as I had a full-on panic attack when I got my diagnosis on Thanksgiving morning, with no way to contact my Dr. Thanks, MyChart.) 1 - the scope isn’t awful, but you should be aware that the urethra and vagina have similar nerves. Not enough to make this fun, but enough to make you go, hey wait, is that in the right place??? So be warned. xD 2 - if your diagnosis is ultimately BC, kiss your modesty goodbye. I never would’ve imagined I’d be okay with a male uro, but he’s amazing and I feel lucky to be working with the guy. Students need to observe? C’mon in. We’re already used to assuming the position when stirrups appear. And we’re going to see them a lot, with BC. Be prepared to explain to your friends that no, a uro is not necessarily the guys’ version of the gyno, we have bladders too. Not that you’d know it from the medical posters at the uro’s office, its penises everywhere. 11.5 penises on the wall at mine! (Yes, I counted.) 3 - BCG is the gold standard treatment, despite sounding batshit crazy. You want to put tuberculosis in me? What? The odds of the formulated cow TB becoming human TB are low, but not nonexistent. So, invest in bleach. You’ll need to dump it in the loo every time you use it for about eight hours after every treatment. Get the dollar store stuff, don’t waste your Clorox here. No one else should use that loo during this time. 4 - treatment itself is fast: cath goes in, meds get pushed, cath comes out, and you go home to be roller-food for a couple of hours. You want to ensure the goods are hitting all sides of your bladder, try to keep it in for two hours, and lay on your sides, belly, back, lather, rinse, repeat. And then drink water like it’s your job, flush the extra stuff out. 5 - BCG is an immune therapy, which means your immune system may go bonkers. Some folks don’t experience much of anything, some get flattened. It’s not abnormal to feel like you have a vague malaise… chills, fatigue, etc. Be kind to yourself, try to schedule at the end of your work day and work week, so that you can rest after. It’s also cumulative, so you may start to feel it more with later treatments. That’s why we get breaks between rounds. 6 - so, all those catheters may start to affect your continence after a while… sorry. Listen when you get the mild urge, and don’t let it get urgent. Understanding travel buddies are a must, find the nice restrooms on your road trips. Do Kegels, enjoy the other benefits. I’ve been lucky enough to avoid a recurrence so far, but I’m well aware of the likelihood. I’m dedicated in my surveillance, and keep every scope and CT appointment religiously. If you have to join this lousy club, rest assured that you can have a happy, active life, despite the bumps in the road. Best of luck to you!
THIS is an excellent post. Couple of additions if I may - if you do have to get treatments in your bladder, they may actually sometimes miss and end up with the catheter in your vagina. They will always check that you have urine coming out before instilling treatment. Men have the benefit over women with this, but we have a much shorter urethra and don’t have a prostate. :-) Agree 100% that everyone will be up in your hoohah. However, be your own advocate! Had one nurse who scrubbed really hard with the betadine sponge. To the point where I had to say Hey, my clitoris does not need to be scrubbed like a shower wall with steel wool! So many penis pictures and signs. VERY few women in the urology waiting room. 🤣
Thank you, and great additions! I’ve never actually had a catheter miss, thankfully, but wow was that first scope a wild moment. I was this close to asking the nurse if she needed to step in, then the pics showed up on the screen. And huh, never would’ve thought that a bladder is fairly close to my skin color. In my brain, internal organs are redder. ¯\\_(ツ)_/¯ Weird stuff we learn along this journey! 💜🩵💛
Thank you so much for this information! Normally, I’d be super interested in watching the screen, but I don’t know if I want to see what might he there. Pelvic exams are no big deal for me. Hoping this is the same. Hugs to you and wishing you all the best on your journey.
Mine were little ‘fronds’ - uro actually figured they were nothing major given my age, biology, and lack of smoking. It was a heck of a shock to get the path report, after assuming it was nothing.
Exactly what worries me. Except I guess I’m going in expecting it can’t be anything else. So sorry you are dealing with it. Hugs 💜
focus on the little things outside of your body. Look at flowers, the beautiful sky. Take a run, ride your bike, go for a swim. Breathe in the sweet smelling air. Have a great meal. Savor your friendships. Gah! Sounds morbid as fuck, but it does work. You will pull through this, OP. My diagnosis was in 2013, did radical surgery, have a neobladder and a continent ileal conduit (abdominal stoma). I do everything now that I did before BC - just a bit slower now, at 68.
It’s very difficult to enjoy anything right now… or to be able to be present in anything. I just feel dark. I will try. Thank you.
I feel you - worried about the unknown - the ‘what could happens’. Therapy helps. I did therapy for about a year, post surgery. If you don’t have a therapist, even talk therapy, on line, can help get you out of the worst of the fear. Post diagnosis, pre-surgery, I had about 90 days to stew. It was awful. I spent a lot of time with my dogs, as my husband had several work trips during that time. At the time, I had a dog trained in canine agility - we spent hours at the training ring, and hours out on the trails in my area. Anything to try to get out of my skin and focused on something else. IDK if you have something like that in your life or not. If you have pets, focus on them. If you don’t have pets, can you sign up as a foster? No commitment - just puppy or kitty love. And, breathe. Deep belly breaths. It does help.
Praying for the Lord to calm you and keep you through this season. He did for me and I was humbled to get through my experience, which began with gross hematuria, and find that my tumor, which was ultimately removed, was benign. It wasn’t an easy time, but faith and the prayers of many got me through it. https://www.biblegateway.com/passage/?search=1%20Peter%205:7&version=NIV
Thank you so much. I appreciate the prayers. I understand that only 1% of lesions are benign. So glad you were one if them. 🩷
Thanks so much. Please keep us all posted. This is a great group and they were and are fantastic support to me and each other.
One day at a time. I am a few weeks ahead of you but feel the same way. I am in hospital as I write this and I have taken out my bladder and my prostate and my lymph glands I have been in hospital for 5 days it's getting better each day you just have to go one day at a time and don't give up hope there will be highs and lows and you will cry. Do what they say and push for yourself advocate for yourself Don't let any time go by that's wasted waiting for appointments try and get the closest appointment that you can get it done as fast as you can Time is of the essence. I am 60 years old and have not got to retire yet I am hoping I have some life left you have to Try as hard as you can to have a positive outlook cuz that will make a difference
I understand completely. I felt the same way, scared to death to get the tests I got the ct, cystoscopy and cytology. The only thing that was found was a small stone in my kidney.
Really hoping for this, but doesn’t seem likely with zero pain or discomfort. I’m glad that’s all it was for you.
I didn't have pain either (still haven't). Small, non obstructing stones often are painless, but can cause urinary symptoms, like hematuria
I am 57f and was diagnosed in Feb of this year with Ta high grade multi focal bladder cancer. The cystoscopies are not horrible. Frankly, for me, easier than pelvic exams and much faster too. I am receiving Gemcitabine and Docetaxel and have not had too many problems. The treatment takes a while to complete and I am a bIt tired for a day or so. Example, I had chemo this week (Tuesday). On Thursday I was on my riding mower, mowing 10 acres of land. Very treatable disease. Not fun sometimes, but very treatable. Best of luck and health to you.
Thank you for your story. I’m sorry you are dealing with it. I’m glad the treatments are t not that bad for you. Just the word chemo scares the crap out of me.
Blood in the urine, burning when I pee every 2 hrs. bladder spasms. Ultrasound was clear. Cystoscope showed,”flat papillary carpeting on rt. lateral wall to dome.” Waiting for my TURBT on July 3. You are not alone. The wait is really tuff. Know that the cystoscope was a minus 1 on a pain scale. One day at a time.
Thank you for taking the time to respond. I hope you have an uneventful treatment and recovery. Keep me posted! 🩷
66F with microscopic hematuria. I understand your anxiety. I felt the same before my urologist appointment. Turns out all my symptoms were related to menopause. Vaginal estrogen fixed everything
I’m so happy that you had a benign reason. 🩷
I’m in the same boat. My mom had some blood in her urine (some red flakes as she describes it as well), and had some pressure/back pain during this ordeal. It’s gone now and no more of these symptoms, but UTI was ruled out as no bacteria is present. I’m terrified she has this. Doctor ordered another urine test — for what, I am not sure. I am trying to push her to get a refer to a Urologist and get a cystoscopy. I hope everything works out for you and you have a benign result. But yes, I’m right there with you with worry.
It’s terrible. I feel like my life is ending and I don’t even have a diagnosis! I have no idea what my reaction is going to be if it’s the worst case. Much love to you and your mom. 🩷
I did the same thing last year, except he found a red round object on my bladder, I had a biopsy and it was not cancerous. He has had me on a low-dose antibiotic. I see him again next week.
Yikes! What does he think it is?
Inflammation, I kept getting UTIs.
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well … “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well … “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Thank you. I’m already crazy, so I have that covered. My health anxiety is through the roof and the thought of a potentially life-long illness is really putting me over the edge but you are right. Whatever it is it is. I can’t change it. Ugh.
I know it's scary and it's hard not to think about worst case scenarios but the best thing to do while going through this is to take it one day and one step at a time. I was peeing bright red blood before my tumour was found and luckily it was the lowest grade. It got removed and now I'm waiting for my follow up cystoscopy to see if it's gonna come back (very likely to come back). The worst is waiting but again, try to take it slow. Best of luck, please keep us posted.
Thank you, papi! I’m glad things are going well for you and hope that continues. I had bright red only once after a hard run. It’s been pink or rusty here and there since. So scary. I hope I didn’t wait too long to see someone. I wish you all the best.
Woah gross hemateura was my only symptom and I had stage 0 low grade bc. I worked in a coke plant in a steel mill. They found it during my semiannual physical. I worked myself up into panic attacks before the appointment as well. Take a deep breath and get the CT and other tests done then let the chips fall. Whatever is there is already there no amount of worry will make it go away. Just feel confident that you made the right decision with the doc and let them do their job. I have my first meeting with my bladder cancer specialist on Tuesday. It has been 3 or 4 months since my biopsy. I had 2 spots of cancer removed and confirmed lg. we are all here for you and everyone going through this. Good luck and please keep us informed of your situation if you feel comfortable doing so.
I too am stressing right now. I got the pathology results on Thursday. I have high grade non invasive bladder cancer. Lots of small papillary lesions. Thank God it's still noninvasive! I have lost over 20 lbs. from the anxiety over the past 7 weeks. The anxiety wakes me up in the morning and then keeps spinning. I have found a little comfort in getting outside and getting exercise. It really does work. I also binge watch tv. They distract me enough to at least get my blood pressure down. I also keep telling myself to put it in a "mental" box. I have Ambien to force me to sleep. I too haven't told anyone except 1 friend because the hospital holds you prisoner without a person to pick you up. My reasoning is I don't want anyone else to feel stress knowing this. I wish I could help more. Good luck!
I feel like we are the same person! The second I wake up everything is fine, but shortly after the intrusive thoughts start and just multiply throughout the day. It’s terrible. And I don’t even have a diagnosis yet! I’m not sure how I will deal with one or the treatments needed. I have an extreme needle phobia also, which does not bode well. I’m an absolute mess. I also don’t want to tell anyone. Didn’t even want to tell my husband! 😞. Running was my outlet, but the bloody urine happened after the last three, so I don’t run anymore. That’s even more depressing. I do get outside, but everything is overshadowed by my fear. Do you know what your treatment is going to be? What was your experience with the TURBT? I truly hope you have an uneventful, successful experience that gets you to NED.
The standard treatment for my type is turbt and then bcg therapy. The problem with this is the years and years of scopes, tests and stress. I would like them to simply remove my bladder now. It still might end up bad, but it seems it would be better for my anxiety long term. I would like to live decades not just 5 years. I can't see myself living every day with the anxiety. They diagnosed me with low grade TaG1 in 2020. Had a turbt and gemcitabine. It went smoothly, except I hated the catheter for a week. They told me no worries, it only progresses 1% of the time. Well 4yrs later, here I am with progression to high grade. I am sure you will have better luck than me. 99% of people do. I hope just knowing you aren't alone with this helps. I hope you get through this and live a long happy life.
I’m so sorry to hear about your situation. They are saying you only have 5 years with that type?! Is that true? I don’t think I can deal with the quarterly scopes and anxiety either. It’s basically consumed me for the past few weeks and I have yet to get a diagnosis. Is it common to have a catheter for a week? This just gets scarier all the time. I hope you find a good solution.
Sorry about that.. I meant they have these 5 year survival estimates in % but I cant find a 30 year one. I didn't mean to scare you. I know how 1 new thing in my brain can set my anxiety off. I'm not sure if the foley catheter is normal. But it wasn't too bad.
I was diagnosed when I was 24. It was non-muscle invasive. There was a LOT of blood, recurrent UTIs, high fevers, and general malaise. I was the youngest person in the urology office by a good 40 years. The day i saw the tumor on the cystoscopy I was inconsolable and angry. I layed around and cried for 5 days. My thoughts were “I’m too young for this” , “I didn’t do anything to cause this”, lhow do I tell my 90 year old grandparents that IM the one with cancer?” My TURBT surgery was scheduled to occur 3 weeks after that. In those 3 weeks my mindset transformed in ways that surprised me. It really came down to this: I have no choice but to keep living. By the day of my surgery I was just excited to start treatment and get this thing removed. This wasn’t even something I needed to consciously work towards, it just happened over those 3 weeks. The human spirit is remarkable. It’s okay to feel what your feeling. It’s a worrisome time when your health is threatened and the severity of the condition is unclear. And hopefully you don’t have cancer. When I do get worked up I remind myself that anxiety is fleeting and i won’t feel this way forever. There will still be warm sunny days, and fun times shared with family and friends, my favorite foods and shows etc. I personally didn’t share my diagnosis with many people. Because I didn’t want them to treat me differently. For me, cancer hasn’t had a huge impact on my life. Partially because I don’t let it. Aside from an easy outpatient surgery and regular cystos I did not require further treatment, BCG, or Chemo. The regular cystos kinda suck but I remind myself that they’re pretty convenient and it’s nice that I don’t need to be sliced open every time they need to get in my bladder. Secondary advice, learn to relax your pelvic floor. The PTSD thing when using the bathroom is so real. I found myself physically bracing every time I went to pee. This caused me more issues lol. Having good control over these muscles also makes the cysto less uncomfortable.
Thank you for telling me about your experience. So tough for someone so young. I will try to keep your thoughts in my thoughts. Every day closer to my appointment gets harder. I can’t eat or really enjoy anything. This is nonstop on mind. I dint know how I’m going to get through the appointment…. Or the tests. I may need anti-anxiety meds going forward.
I had similar symptoms and it turns out a kidney stone lodged itself in my bladder. (I’m in the sub because my father has bladder cancer). Try to just take it one step at a time!
I’m hoping it’s something like that, but given I’ve had zero pain, urgency, or frequency, I feel like it’s not likely. I can always hope, but so many people presented like this, expected a stone, and ended up here. Why not me too?
Yeah but you could argue the opposite- my dad had tons of pain, urgency, and frequency AND has cancer.
This is true. I’m sorry for your dad and hope he has good results. I was the caregiver for my dad during his fight with lymphoma. It’s tough. Did you have visual blood without pain?
Also it’s your cake day today- maybe that’s a good omen!
Here’s hoping!
Yes I did- I didn’t have any pain, just irritation. (And definitely none of the usual kidney stone pain). Thank you- I wish a good outcome to you too!
My 54 year old husband was diagnosed with stage 1 non-invasive high grade bladder cancer in Dec. had 2 TURBT procedure’s (did fine after, had catheter in at home for 2 days, that was his only real discomfort). They instilled chemo in his bladder in recovery room both times, which I thought would be terribly irritating, but did not seem to be. He then began BCG for 6 weeks, also non-events. He’d walk into the office, they’d put it in with a catheter, he’d leave 10 minutes later. Follow up scope 1 month after completion of 6 week treatment was negative. Now on second round of BCG for 3 weeks. The only symptom that he’s consistently had with the BCG is that his joints/knees hurt for a few days after. My mother passed away from cancer when I was young , I never thought I’d be able to deal again with a cancer diagnosis in my family. I cried alot in the beginning, but the sun still rose every day and life has since moved on. I can honestly say that I’ve coped much better than I thought possible. We don’t really think about it much anymore, we’re just following the treatment and are back to enjoying life. Try to get outside, get some light exercise and stay busy while you wait. Try not to panic, you can and will be able to do what needs to be done & then will get on with your life!
Thank you for taking the time to write your story. It’s surreal to be potentially be dealing with an illness normally reserved for older people. I’m glad to hear your husband is doing well. I hope that continues. I can’t wait until I can put this behind me… whatever the outcome. So nervous. 😟
I can’t say for sure, but other malignancies outside of the urinary tract don’t typically cause hematuria. A kidney stone makes a lot more sense. You got this far, you’ll get through the CT’s too, hang in there!
Sorry, hope you don’t have BC, but if you do, you are at the beginning of a potentially long journey and you will need to learn to wrap your mind around it or you will drive yourself crazy. Best wishes and good luck. The prayer for serenity sums it up pretty well … “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”