Martin....my radical cystectomy last Sept. removed my bladder, prostate and neighboring lymph glands. Thankfully, my right kidney remains intact. My forthcoming CT scan was prescribed to reveal the cause of the 5 days of hematuria now resolved.
Martin Jensen, Volunteer Mentor | @predictable | Nov 9, 2019
Hi, @spooz2. I appreciate Colleen's foresight in asking about your hematuria. I'm hoping you're OK about the diagnosis of an idiopathic condition. That's my situation also. My urologist gave me a long lecture on the wide range of possibilities: Any number of arteries, veins, or capillaries around my bladder might be the source of the blood -- tracking it (or them) down would be difficult. Besides, the blood was pretty dilute when it came out, suggesting a relatively minor source, and it ended in a day or two. If it were "frank" (undiluted) blood, we would have spent some time and money tracking it down. Now, 10 years later, I still get a little pink now and then, but don't worry much about it. My (now) annual cystoscope exam reassures me. Martin
Hi, @spooz2. I appreciate Colleen's foresight in asking about your hematuria. I'm hoping you're OK about the diagnosis of an idiopathic condition. That's my situation also. My urologist gave me a long lecture on the wide range of possibilities: Any number of arteries, veins, or capillaries around my bladder might be the source of the blood -- tracking it (or them) down would be difficult. Besides, the blood was pretty dilute when it came out, suggesting a relatively minor source, and it ended in a day or two. If it were "frank" (undiluted) blood, we would have spent some time and money tracking it down. Now, 10 years later, I still get a little pink now and then, but don't worry much about it. My (now) annual cystoscope exam reassures me. Martin
Thank you for your post. I have had gross hematuria on and off for throughout the day for the past 8 months or so. The appearance is a brownish color and the culture shows red blood cells. However, CT shows nothing (only a very small and stable stone less than 2 mm from 2019) and cytoscopy in 2019 and again in May of 2022 are clear. Yet, the hematuria continues- at least once a day- my internist, my hemotologist-oncologist, and my urologist are all stumped. Any suggestions?
Thank you for your post. I have had gross hematuria on and off for throughout the day for the past 8 months or so. The appearance is a brownish color and the culture shows red blood cells. However, CT shows nothing (only a very small and stable stone less than 2 mm from 2019) and cytoscopy in 2019 and again in May of 2022 are clear. Yet, the hematuria continues- at least once a day- my internist, my hemotologist-oncologist, and my urologist are all stumped. Any suggestions?
Hi, @hope222222. I have no information or even hunches on what may be causing your problem. Your description presses me to think of dark brown urine with numerous red cells, but I suspect I'm exaggerating. That it occurs daily is concerning to me. Is it about the same time every day? Have you considered UTI (urinary tract infection)? Here's a Mayo Clinic web site on that: https://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/symptoms-causes/syc-20353447.
Given that your whole medical team is working with you, I'd only ask whether they could add a nephrologist to check for kidney involvement. I also have heard of (but have no personal knowledge of) involvement of the digestive tract in circumstances with similar symptoms. I hope you continue to feel confident that your problem is under control and will end soon.
Thanks Martin. The initial screenings were for infection, but no infection has existed! I am making an appointment with a nephrologist just in case- had the same thought. I had not thought about digestive involvement- I haven't seen anything in my readings tilting me in that direction- but I am happy to have the advice and will look into it!
Hello, I have severe thickening of the bladder wall. I had a level 1 pappillary lesion removed in 2000. Over the past 20 years, my bladder wall has thickened and I suffer from OAB. Does anyone know of any studies linking OAB (overactive bladder) to either cystoscopies or the cancer itself? I had 16 cystoscopies plus the removal of the lesion through the cystoscope. Thank you!
Hi, @spooz2. Glad you're back with us after 10 weeks or so and that you came across this press release from a European research team. It claims good results for four patients with metastasizing bladder cancer by attacking a protein molecule that's pivotal in establishing new cancer cells that travel away from the bladder to other organs, near and far with the body. It's good to learn of your interest in metastatic cancer, assuming that your medical team's diagnosis of your case raises that possibility and that it is on the list of conditions that your therapy plan will confront. Perhaps they will consider this new therapy among those that would be promising in your case. If you can, keep us updated on what has evolved in your treatment over the past 10 weeks and what you're hoping to do next. Martin
There is much information on the internet from responsible sources with clinical studies.
Specifically the use of Curcumin to improve results. I had stage II muscle invasive bladder cancer and used it before, during, and after successful chemotherapy. It also eliminated all Chemotherapy side effects. On my recent visit to Brazil, I found that the oncologists I spoke to prescribed one gram each of curcumin and vitamin C per day to their patients. They were also aware of the Galleri test as a less invasive way than cytoscopy to check for cancer recurrence. I am also using the more specific Natera test for my bladder cancer. Both are simple blood tests.
lhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494770/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2604907/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/
I was just diagnosed with bladder cancer. Went to the ER very sick last week, an abdominal CT showed bladder thickening. The follow-up cystoscopy yesterday showed a growth in the bladder near a urethra. I'll have surgery in a few weeks to remove as much of the growth as possible and then the bladder will be flooded with a chemo drug. The growth will be sent out for a biopsy and this will determine future actions, if any, needed. Urologist said he didn't think (but, of course, couldn't absolutely know) that it looked like an in-situ tumor. Kind of numb at this time.
I was just diagnosed with bladder cancer. Went to the ER very sick last week, an abdominal CT showed bladder thickening. The follow-up cystoscopy yesterday showed a growth in the bladder near a urethra. I'll have surgery in a few weeks to remove as much of the growth as possible and then the bladder will be flooded with a chemo drug. The growth will be sent out for a biopsy and this will determine future actions, if any, needed. Urologist said he didn't think (but, of course, couldn't absolutely know) that it looked like an in-situ tumor. Kind of numb at this time.
Just take it a day at a time. The lab will determine grade and stage. Have an advocate that will ask questions and research your type of cancer. Join BCAN as they are a great resource. Find the best facility for treatment. My husband is in a clinical treatment at Mayo and is doing great. Stay positive.
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Any update on the cause of the hematuria, @spooz2 ?
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3 ReactionsCT Scan abd/pelv negative. Hematuria ideopathic.
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2 ReactionsHi, @spooz2. I appreciate Colleen's foresight in asking about your hematuria. I'm hoping you're OK about the diagnosis of an idiopathic condition. That's my situation also. My urologist gave me a long lecture on the wide range of possibilities: Any number of arteries, veins, or capillaries around my bladder might be the source of the blood -- tracking it (or them) down would be difficult. Besides, the blood was pretty dilute when it came out, suggesting a relatively minor source, and it ended in a day or two. If it were "frank" (undiluted) blood, we would have spent some time and money tracking it down. Now, 10 years later, I still get a little pink now and then, but don't worry much about it. My (now) annual cystoscope exam reassures me. Martin
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Helpful -
Hug
3 ReactionsThank you for your post. I have had gross hematuria on and off for throughout the day for the past 8 months or so. The appearance is a brownish color and the culture shows red blood cells. However, CT shows nothing (only a very small and stable stone less than 2 mm from 2019) and cytoscopy in 2019 and again in May of 2022 are clear. Yet, the hematuria continues- at least once a day- my internist, my hemotologist-oncologist, and my urologist are all stumped. Any suggestions?
Hi, @hope222222. I have no information or even hunches on what may be causing your problem. Your description presses me to think of dark brown urine with numerous red cells, but I suspect I'm exaggerating. That it occurs daily is concerning to me. Is it about the same time every day? Have you considered UTI (urinary tract infection)? Here's a Mayo Clinic web site on that: https://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/symptoms-causes/syc-20353447.
Given that your whole medical team is working with you, I'd only ask whether they could add a nephrologist to check for kidney involvement. I also have heard of (but have no personal knowledge of) involvement of the digestive tract in circumstances with similar symptoms. I hope you continue to feel confident that your problem is under control and will end soon.
-
Like -
Helpful -
Hug
3 ReactionsThanks Martin. The initial screenings were for infection, but no infection has existed! I am making an appointment with a nephrologist just in case- had the same thought. I had not thought about digestive involvement- I haven't seen anything in my readings tilting me in that direction- but I am happy to have the advice and will look into it!
Hello, I have severe thickening of the bladder wall. I had a level 1 pappillary lesion removed in 2000. Over the past 20 years, my bladder wall has thickened and I suffer from OAB. Does anyone know of any studies linking OAB (overactive bladder) to either cystoscopies or the cancer itself? I had 16 cystoscopies plus the removal of the lesion through the cystoscope. Thank you!
There is much information on the internet from responsible sources with clinical studies.
Specifically the use of Curcumin to improve results. I had stage II muscle invasive bladder cancer and used it before, during, and after successful chemotherapy. It also eliminated all Chemotherapy side effects. On my recent visit to Brazil, I found that the oncologists I spoke to prescribed one gram each of curcumin and vitamin C per day to their patients. They were also aware of the Galleri test as a less invasive way than cytoscopy to check for cancer recurrence. I am also using the more specific Natera test for my bladder cancer. Both are simple blood tests.
lhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494770/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2604907/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/
-
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Hug
3 ReactionsI was just diagnosed with bladder cancer. Went to the ER very sick last week, an abdominal CT showed bladder thickening. The follow-up cystoscopy yesterday showed a growth in the bladder near a urethra. I'll have surgery in a few weeks to remove as much of the growth as possible and then the bladder will be flooded with a chemo drug. The growth will be sent out for a biopsy and this will determine future actions, if any, needed. Urologist said he didn't think (but, of course, couldn't absolutely know) that it looked like an in-situ tumor. Kind of numb at this time.
-
Like -
Helpful -
Hug
2 ReactionsJust take it a day at a time. The lab will determine grade and stage. Have an advocate that will ask questions and research your type of cancer. Join BCAN as they are a great resource. Find the best facility for treatment. My husband is in a clinical treatment at Mayo and is doing great. Stay positive.
-
Like -
Helpful -
Hug
3 Reactions