Welcome to the Johns Hopkins Bladder Cancer Blog
Who am I? I’m Dr. David Berman, a bladder cancer researcher and urologic pathologist (a physician who diagnoses diseases of the bladder, kidney, prostate, and other organs of the urinary and reproductive tracts). I received a PhD in genetics and developmental biology and an MD from the University of Texas Southwestern Medical School. I was a resident in Anatomic Pathology and Chief Resident at The Johns Hopkins Hospital, where I did sub-specialty training in urologic pathology. I did additional postdoctoral research training in Molecular Biology and Genetics at Johns Hopkins and joined the faculty in 2001.
I lead a research team whose work is aimed at understanding how bladder cancers form and spread. Through this work, we hope to develop new treatments that specifically target the cancer without harming healthy organs.
Our institution has a large number of experts in bladder cancer risk factors, research, treatment, and diagnosis. From time to time, my colleagues and I will be bringing you expert analysis on these topics.
Now, we need your help in starting this conversation.
What topics would you like to see discussed here?
What information is hard to find or difficult to understand?l
What would be most helpful for people with bladder cancer and their families?
We’re looking forward to hearing from you.
December 10th, 2008 at 7:10 pm
My father in law is trying to make the decision as to whether or not he should have surgery to remove his bladder urethea and protate due to the diagnosis of a high grade cancer. He is 77 years old and has been told the recovery is long and difficult. One topic we would be interested in would be exploring the recovery journey for oplder patients
December 11th, 2008 at 10:21 am
Valerie,
A great question for survivors.
Thank you.
December 15th, 2008 at 3:18 pm
My dad had a TUR three weeks ago for removal of a a golf-ball sized bladder tumor. He had been complaining of frequent trips to the bathroom at night for four years; his PSAs and DREs had been normal, so his physician wasn’t worried about a GU condition; thought he was just a light sleeper. UA during a physical exam showed blood…they treated him for a UTI and did a follow up UA….still had blood, so finally referred him to a urologist. Here’s my question….the urologist believes he got the entire tumor and did get clean margins. Could a tumor that had perhaps been growing for 4 years still remain noninvasive? Only 3-month cytoscopies are recommended. Is that a “normal” course of followup? Dad is 76. Thanks.
December 15th, 2008 at 7:59 pm
Becky,
Golf ball-sized tumors (and larger ones) can be present for several years without invading, particularly if they are “low grade,” meaning they look less abnormal under the microscope than a high grade aggressive tumor. The followup sounds appropriate to the diagnosis, but if it’s o.k. with your dad, you should discuss diagnosis and management with the urologist until they make sense to you (see my earlier post at http://apps.pathology.jhu.edu/blogs/bladder/?p=10#comments). Examination of the specimen by a pathologist is an important part of the equation that guides therapy. You can read about it here: http://tinyurl.com/NYT2ndOpinion
December 16th, 2008 at 6:17 pm
Becky,
As Dr. Berman commented on Dec 15th, most likely your dad has a low grade tumor. Only pathology examination can determine the exact grade (degree of aggressiveness and likelihood for recurrence) and whether the tumor has started to invade (penetrate) the underlying bladder wall.
By going back in three months for a second cystoscopy procedure, his urologist will be able to determine whether any tumor regrew back and will re-biopsy if necessary.
December 22nd, 2008 at 1:24 pm
Hi Valerie, I see your Father is in the process of making a decision as to whether or not to proceed with the surgery. Your concerns were around recovery for older patients.
Surgery is surgery whether you are 5 years old 55 years old or 77 years old. It is an invasive procedure, your body is going to be very angry. But, beyond the few days of discomfort is a healthy life. And that is what your Dad should focus on. I am not here to tell your Dad to man up and have the surgery. I’m here to tell him that there will be days when he won’t feel like a human, but there will be many, many more days that he will. I view recovery as a downhill process. We’ve been up hill with our diagnosis and treatments and/or surgery. It’s all coasting downhill from there. And recovery depends on the course of surgery your Dad chooses. I have an Indiana Pouch, many folks choose to have an external appliance. Surgeries are quite different and your lifetime commitment is different as well. You should visit blcwebcafe.org, read a small snipit I wrote about my surgery and life immediately following…http://blcwebcafe.org/content/view/42/29/lang,english/
I am available to answer any questions you or your father may have. Nothing is out of bounds. Your Father is so lucky to have you as an advocate. Please, ask anything you like.
December 24th, 2008 at 1:26 pm
Doctors Berman and Netto
I was originally diagnosed with low grade urothelial papillary carcinomas of unknown invasion. There were three tumors, the largest 3 cm which, I think, put me on the cusp of higher progression risk.
I have had cystoscopies for the last year and half, every three months. The results have been good. Recently, my Doctor recommended I go to six month intervals which is a most welcome development.
However, I am interested in getting some marker work done to be sure six months is not too long to wait. I will talk to m Doctor about it but in the meantime, can you tell me whether Johns Hopkins does such work and, if not, who else does in the Baltimore-DC area?
Thanks
Spiros
January 7th, 2009 at 1:08 am
Doctor Berman,
My husband, age 53, had a TUR done in late November to remove a golf ball sized tumor. The pathology report said “papillary urothelial cell carcinoma, grade 1. No lamina propria invation noted. Muscularis propria not present.” Good news–but after a cystoscopy yesterday the urologist wants to do another resection in a month because he did not remove all of the tumor, and he wants to get a muscle specimen. The bladder was perforated during the procedure (because the patient’s leg spasmed.) If the cancer is low grade, is it really necessary to resection again to get muscle, and is it necessary to get every bit of the tumor right away? He also plans to do intravesical Mitomysin C after the next resection. Is this also necessary with grade 1, with no recurrence yet?
Thanks. Ann
January 12th, 2009 at 8:53 am
Dear Ann,
You can see a discussion of muscularis propria sampling in non-invasive disease in a recent post by Dr. Fajardo on our blog (http://apps.pathology.jhu.edu/blogs/bladder/).
It sounds like your urologist is concerned that there might be something more than low grade non-invasive cancer present. I think it’s reasonable to sit down with him and express your concerns and questions. Medical care these days is a partnership between the physician, the patient, and the family. If everyone isn’t on the same page, it doesn’t work very well.
Good luck to you and your husband.
January 19th, 2009 at 6:08 pm
Have any webiste posters besides myself had a cystectomy?
January 19th, 2009 at 11:20 pm
MY FATHER WAS 58Y/O WHEN HE REQUIRED A CYSTECTOMY FOR RENAL CELL CARCINOMA WHICH HAD METASTSIZED TO LIVER. HE WAS A HEAVY SMOKER , ALSO EXPOSED TO FARM PESTISIDES. MY 81Y/O MOTHER ALSO HEAVY SMOKER AT ONE TIME HAS JUST HAD A CYSTECTOMY FOR UROTHELIAL MUSCLE INVASIVE CANCER GRADE 4. I HAVE HAD MICROSCOPIC HEMATURIA SINCE AGE 20. I HAD A CYSTOSCOPY DONE 3 YEARS AGO WHICH SHOWED SEVERE CHRONIC CYSTITIS. MY UROLOGIST DOES NOT THINK IT IS NECESSARY TO RESCOPE ME.MY AGE IS 50 NON-SMOKER.WHAT IS YOUR ADVISE?
January 20th, 2009 at 5:02 pm
Barb,
Not a straightforward situation. The cystitis complicates things a bit. I wonder what the cause could be, and whether or not you have symptoms. It would seem like a good situation for a non-invasive test such as urine cytology, althoug Cystitis can make urine cytology difficult to interpret.
February 3rd, 2009 at 2:56 pm
I have a relative that is going to be 90 years old in July. October 2007 she noticed blood in her urine. In January 2008 she went in for a biopsy, but the doctor had to stop the procedure because she was taking 81 mg. of aspirin. She did not stop taking the aspirin 10 days prior to the procedure. The doctor thought that she was going to bleed to death. The doctor told me that he was able to determine that she had invasive bladder cancer just by looking at the pictures taken. She chose to not have any treatments, surgery or chemotherapy due to her age. It has now been 16 months since she first noticed the bleeding. The doctor told her that a person usually lives 2 years once diagnosed. He could not tell us the stage of her cancer because he could not finish the biopsy. For several months she did not see any blood, even though the doctor said that he could see it in the urine samples. In December she bled for 2 days then it stopped. Last week she had another episode and has been bleeding off and on for a week now. She says that she does not have any pain, she is only sore. She is still very active, she drives and visits her friends. She has lost weight, her feet swell and she gets tired very easily. I am trying to determine what signs/symptoms to look for in the advanced stages. Will the bleeding be more frequent?
February 12th, 2009 at 11:33 pm
Dr. Berman,
I am a 47 year old male dx. with two 0.75 cm superficial transitional cell tumors in 2000. I had three reccurences seven yrs. later in 2007 as follows:
jan.2007 4 very small tumors
june 2007: 8 very small tumors
dec. 2007 13 very small tumors
very small meaning < .25 cm
Since then I have had cysto’s every 3 months and all were clean with the exception of a couple of lesions which were biopsied and noted to be inflamation.
My question relates to my 50 yr old sister who was noted to have 6 colon polpys 2 yrs ago and then 21 polyps on a follow up colonoscopy the past week. She was told by the MD that she should tell me to get a colonoscopy asap. I was a little surprized at his concern since I have never been told by my urologist I should do this. I consider him an excellent urologist and he himself has had bladder cancer. I am going to tell him about my sisters finding since he is not aware of them as this is all news to me today. I do want your imput on this type of case. I am a PA-C working in occ. med.
thankyou, Berkley Williams
February 13th, 2009 at 8:00 am
Mr. Williams,
Large numbers of colon polyps, especially prior to the age of 50, suggests that an individual has what we call a somatic mutation in a gene that prevents cells from becoming cancerous (so called tumor suppressor genes). People normally have two good copies of these genes, so if one is mutated, the other can still do the job. However, the 2nd copy can be turned off or mutated by events we don’t understand and lead to polyps. Additional genetic changes are thought to develop in the polyps and lead to cancer.
The two most common syndromes to consider involve inherited mutations of different genes, and are called familial adenomatous polyposis (FAP) and hereditary nonpolyposis colorectal cancer (HNPCC). Of these, FAP is the one that presents with large numbers of polyps. Wikipedia does a nice job of explaining these syndromes.
What does this have to do with bladder cancer? Some of the patients with a mutant tumor suppressor gene inherit this gene from their parents. Researchers study these families and find that there is an increased risk of bladder cancers associated with the increased number of colon polyps. Since colonoscopy is recommended for everyone at age 50, it would be prudent for anyone with a family history like yours to get checked out earlier. The most severely affected patients will have polyps as children. In patients with multiple colon polyps, examining the upper tract (stomach and small intestine) should also be considered, and plans for family members adjusted accordingly.
February 19th, 2009 at 11:25 am
My husband was diagnosed with bladder cancer over a year ago. His first surgery determined the tumors were the size of golf balls. The cancer did not go into the muscle which was the biggest concern. After that he had six Chemo treatments. (1x a weer). The baldder cancer was back 4 months later though tumor much smaller in size. Again surgury and Chemo treatments. A stronger mix we were told. NExt vist 3 months later he was clean and the visit after at the 3 month interval…..Its back. SO again the surgury to remove and chemo treatments. he just finished with the last chemo treatment. Today he is actually going for a 2nd opinion. We don’t understand why the reoccurance is so soon and so often.
Even though it is always caught in time due to the every 3 month scope thata goes up and checks his bladder it is also very discouraging.
We knew bladder cancer has a common reoccurance rate but have you had this experience with any of you patientsl or research.
February 23rd, 2009 at 6:32 pm
I had a tumor removed last week and just recieved the pathology report.
I’m told it is a Grade 3 Invasive Urothelial Carcinoma.The tumor invaded into the muscularis propria and Focal Invasive Urothelial Carcinoma in situ present. The tumor cells are positive for CK7 and negative for CK20 .Am told I should have the bladder removed for this type of cancer.
Is this a logical procedure for this type of cancer?
February 24th, 2009 at 9:00 am
Susan,
Sounds like a complex situation. Assuming the facts as stated,I think the grade of the cancer is the most critical issue. If the cancer is low grade, patience will likely be the most important issue. If it’s high grade, it is more important to act quickly and definitively. I hope the second opinion helped clarify things.
February 24th, 2009 at 9:07 am
Bill,
Depending on the location and extent of the tumor, and your overall health, there can be other options. However, cystectomy (removal of the bladder) is the gold standard treatment and the one most often offered patients with bladder cancer that invades the muscularis propria. If you do choose surgery, it would be a good idea to bear in mind that this is a complex procedure best performed by a surgeon with extensive experience with this surgery.
February 24th, 2009 at 10:52 pm
Dr. Berman,
What other options could there be? I am 55 and in somewhat good health.
Just trying to see if other options could be viable.
Thank you for you for your earlier response.
February 26th, 2009 at 7:13 pm
Bill,
In a small subgroup of patients with a single invasive lesion at the top of the bladder, a partial cystectomy can be performed. This procedure takes out only the diseased part of the bladder and leaves the rest behind. This procedure is generally not recommended in patients who have cancers that are lower down in the bladder or in patients with more than one area of the bladder that has cancer (invasive or noni-invasive). Other non-surgical approaches are sometimes used for patients who have other medical conditions that preclude surgery or limit life expectancy.
Another issue to be aware of is that some studies show a survival advantage for patients treated with chemotherapy prior to having their bladder removed. This approach, called “neoadjuvant” chemotherapy, is something you should discuss with your doctors.
Finally, I would like to expand my previous statement regarding the importance of having this surgery performed by a surgeon with extensive experience in this specific procedure. It is probably at least equally important to go to a center that performs this procedure frequently. At Johns Hopkins, for example, we do well over 100 cystectomies (removal of the entire bladder) per year, so the nurses, the anasthesiologists, the pathologists, the oncologists, the urologists, and all of the ancillary staff are very experienced in caring for patients undergoing this complex procedure.
There are plenty of other major “centers of excellence” of bladder cancer, but most hospitals would not fall in this category.
February 27th, 2009 at 1:29 am
I just got home from the hospital – my dad (who is 81) went in to have his kidney removed (he has kidney cancer) He also has prostate cancer. When they were doing the surgery they found that he also has bladder cancer and removed a tumor from his bladder. Don’t know what else to say about this ….guess just take one day at a time.
March 3rd, 2009 at 8:34 am
Our thoughts are with you Jill.
March 5th, 2009 at 9:29 pm
My 89 year old dad has stage 3 bladder cancer. He has other problems inc chf, severe arthritis, weakness etc, so extensive treatment is really not an optin for him nor does he want it. Would palliative radiation treatments weaken him further and harm his quality of life?
March 6th, 2009 at 9:19 am
Sally,
This is a difficult but important question. If I were your dad, I would seek a 2nd and possibly a 3rd opinion from an excellent and experienced radiation oncologist — preferably one who has significant experience radiating the bladder.
May 2nd, 2009 at 12:34 am
My mother is 75 yrs old. She was diagnosed in Jan of this yr. with invasive bladder cancer. It has attatched to her pelvis and has moved into her vagina and rectom. We tried treatment, but because of her mild demensia; we had to stop (reactions w/ medications were severe) Her Dr. now says that she will prob. live another few mo. at most. Surgery ws not an option for her or treatment. Just doesn’t seem to be in much pain. Constant bladder infections though. Dr. has said that it will progress quickly to her lungs and brain. ( I know that the cancer doubled in size from Jan to feb) Is this accurate for that to happen that quickly? How could we tell the signs of it progressing especially with the demensia?
May 2nd, 2009 at 7:35 am
62 y.o, BPH for about 5-yrs. Had pain in what I think to be my prostate region and my Primary Dr, thought the same thing! About six weeks ago, blood started showing up in my urine & got worse. A Cystpscopic exam revealed “bladder cancer”. I have surgery scheduled May 4 to remove the cancer. Then I guess we wait for pathology to decide if the cancer has violated the blader wall, which will mean the bladder comes out.
If I have to lose my bladder, I want NOTHING to do wth the “plastic drain bag” and I favor a Ortotopic Geobladder! Any opinions???
May 12th, 2009 at 10:36 am
Bill Jr,
The most important consideration, in my opinion, is to have your surgery performed at a center of excellence where there’s a team that does this procedure often (weekly, at least). This means that they will have had a chance to perfect their craft, and will understand how to approach complications, should they arise.
May 12th, 2009 at 8:34 pm
My Dad had a cystocopy (sp?) w/ the removal of a large tumor and cauterizing the bladder.Immediately after that he went to the Dr’s office, from the surgical center, and they did a chemo treatment through the catheter. He was in so much pain from this surgery, his head was sweating and he had a mild heartattack during a few days time period. He his a very strongwilled man and can certainly take a lot of pain, but this he could not handle. The Dr said it was a invasive cancer, I asked the Dr for the stage of cancer, but he said he was grade 2, but cancer didnt have a stage. In the midst of this cancer, he had to have heart surgery which put any cancer treatment off. His Dr referred him to a Urology Oncologist at a research hospital. When he did the cystocopy (2 1/2 months after the first one) his results came back w/ no cancer cells in the bladder. He wants him to return to his urologist for a few months of chemo treatment. However, my Dad is fearful of going through the chemo treatment w/ the IV thru a catheter. Do you think this was a bad experience or is this type of pain normal for a cystophy and chemo treatment? Also, the oncologist stated the my Dad has some prostate cancer, but not to worry because it’s not the type to kill him. Does that sound cray
May 22nd, 2009 at 8:51 pm
I am male, 54, non-smoker, had pain while urinating for 6 months, diagnosed as prostatitis, treated with cipro to no avail. Finally cystoscopy showed 3 red patches in bladder, were biopsied, showed cystitis and cis in epethelial cells, no muscle present in sample. urologist recommends BCG 2 weeks after biopsy. Got a second opinion – who wants a repeat biopsy to ensure muscle not affected, and also says if cis, then BCG can start a month after that. I am concerned delaying bcg, but also worried not knowing if it muscle invasive. Option 1 is to do bcg now, and then biopsy after 6 weeks. Option 2 is to repeat biopsy now, and then bcg after a month. Any thoughts please?
May 25th, 2009 at 10:17 am
Micky,
This is a tricky question that I can’t answer directly, but I’ll discuss a little in the hope that it is helpful. Bear in mind that I don’t treat patients for bladder cancer (I diagnose it under the microscope), so my statements are based on theory, not practice. BCG is an accepted treatment for noninvasive bladder cancer. Flat CIS is the most aggressive dangerous kind of noninvasive bladder cancer and must be monitored aggressively. If BCG doesn’t clear it, or if it recurs after treatment, some patients are taken to cystectomy (surgical removal of the bladder). An expert urologist with a lot of experience does a thorough cystoscopic exam of the bladder and can usually decide on the basis of visual inspection whether or not there is invasive cancer. In this case, it would not necessarily make sense to go back and biopsy the muscle beneath CIS. On the other hand, if there is any doubt regarding the thoroughness or accuracy of the initial cystoscopy, then another exam would make sense, with biopsies performed on any suspicious areas. The bottom line here is that physicians vary in terms of there skills in evaluating and managing CIS (this is the case with pretty much any medical condition). In the modern era, the patient is expected to seek out the physicians with the skills and style of practice that best match the patient’s needs. Second opinions (and sometimes 3rd opinions) can be an important part of the process. Unfortunately, you will be a bladder cancer patient for the rest of your life (hopefully a long and healthy life), so it’s critical that you find a team of health care providers that you feel do things right. Speaking to some of your primary health care providers (your general practitioner for example), reading up on the web, and talking to other patients can help you make the best decisions.
May 25th, 2009 at 10:55 pm
My Aunt who is 73 was diagnosed with bladder cancer about 2.5 months ago after being rushed to the hospital with severe pain and bleeding, they removed a baseball size tumor from her bladder. She then had a pet scan a couple weeks later and they found a tumor in her lungs, it was bladder cancer that spread to her lung they removed that 2 weeks ago and she is still in the hospital due to chyle leak and now she has an unknown infection causing her to have a 103 fever. She has been told that she will need to have her bladder removed and then chemo, she is not going to do the surgery or the chemo i guess i am just wondering what you think about the situation and what we should expect in the rest of the time she has left.
May 27th, 2009 at 7:42 pm
Mandy,
Sounds like your aunt is really having a rough go of it. Her decision to forego treatment must have been very difficult for her, and reflects, in my opinion, a good deal of courage on her part. I’m not saying that other people should take the same road, but that it is very important for folks to understand that their care is in their control. In very advanced cases, it is not always clear that life is improved by aggressive treatments, particularly surgery. I think what’s most important is to focus on keeping her comfortable and ask the team that takes care of her to do the same.
June 1st, 2009 at 4:07 am
Do you have any info or discussions about polyps in the bladder, and would they cause blood in urine? If the polyp is visible at the urethra, why can’t it be biopsied?
June 6th, 2009 at 4:25 pm
Dr. Berman,
I was diagnosed with CIS in December of 2007. First round of 6 BCG treatments were not successful. Received a second round of six BCG treatments and a biopsy was clear. Waited 3 months and had a 3 course BCG maintanence course and the FISH test returned with Atypia, which my doctor attributed to the BCG. Just had another round of maintance BCG and this FISH test came back as “Rare moderately atypical urothelial cells; recurrent/residual neoplasm should be considered. Clinical correlation is indicated. Acid hematoxylin supports this diagnosis.” After speaking to my urologist, he indicated that he wanted to wait another 3 months and do another biopsy and then possibly try a new chemical/immune therapy. He indicated that my bladder did not look mean angry and just had some pink spots (same as when I was first diagnosed in December 2007). What other chemical/immune therapy would you recommend? If my CIS is resistant to BCG, then will it most likely be resistant to another form of treatment?
June 7th, 2009 at 8:55 am
Dear R. Sturm,
Your post describes well some of the most frustrating aspects of being a patient with a diagnosis of bladder cancer (in your case carcinoma in situ). Having to undergo cystoscopy every 3 months and not being clear on your current status. Until you have negative cystoscopy/cytology tests, you’ll have to continue them frequently to be safe. What I don’t think is clear from your post, and what I think you need to learn more about, is what exactly do your laboratory tests mean? FISH is an acrynom for Fluorescient In Situ Hybridization, a test which looks at multiple DNA sites for abnormalities. It should yield a quantitative score. It should not look be affected by BCG therapy. BCG therapy can make normal cell shapes look funny under the microscope (that’s the “atypical” description), but it can’t change the DNA. The DNA abnormalities are specific for cancer. If further discussions with your urologist and your pathologist don’t clear this up, you may consider seeking a formal second opinion review of your pathology.
June 10th, 2009 at 6:03 pm
Dr Berman, thanks for replying to my earlier query – I had a repeat biopsy which confirmed CIS, but muscle was clear, also they did a prostatic urethra biopsy which was inflamed but negative for neoplasia. I am going to start BCG in about 2 weeks once the bladder heals. In the interim have managed to get an appointment to see Dr Donald Lamm in Phoenix AZ – everyone says he is the master when it comes to bladder cancer treatment and that he is a very nice man; hoping he can give some guidance on BCG protocol as well as Vitamin supplements (his website shows he supports this as well as garlic extract etc). Am feeling good its not muscle invasive, but clearly is a lifelong situation and needs constant monitoring. Thanks again for your earlier guidance, this blog is very helpful!
June 14th, 2009 at 1:06 pm
The pathology report on my dad’s bladder cancer came back reading
A. Urinary Bladder-Tumor resection: High grade papillary urothelial carcinoma (Grade 3) with focal invasion in lamina propria. Muscularis propria is not available for evaluation.
B. Urinary Bladder-Biopsy, deep bladder tumor: High grade papillary urothelial carcinoma (Grade 3) with focal invasion in lamina propria.
Muscularis propria is not involved ny tumor.
Focal urothelial carcinoma in situ is noted.
What stage would this be considered? He will be starting intravesical therapy this week. Is there a poor outlook for this stage & type of cancer? He is 70 years old. Thank you.
June 16th, 2009 at 7:18 am
Julie,
While I think it’s best for your father and you to ask your urologist what stage he considers your dad, the pathology report identifies invasive cancer, with only minimal invasion into the loose tissue directly under the bladder lining, the lamina propria (sometimes the clinical impression and the pathology do not agree and more studies are needed). When lamina propria is the deepest invasive component in a patient with bladder cancer, the stage is T1 and the prognosis is very good, particularly when compared with patients whose cancer extends further down into the muscle wall surrounding the bladder. 5yr survival for T1 is on the order of 85%. Frequent followup (every 3 months by cystoscopy) is required.
June 20th, 2009 at 6:11 am
Hi my dad is about to have his bladder removed but is keen to have a new bladder made. Has anyone out there had this procedure and how successful has it been? Also was the new bladder constructed at the same time as removing the diseased bladder?
Thanks,
Yvonne
June 21st, 2009 at 6:45 pm
Thank you so much Dr. Berman for your reply.
June 24th, 2009 at 3:49 pm
Dr. Berman,
Does a pretty swollen pelvic lymph node only on one side of the body in a patient with suspected bladder cancer indicate actual invasion of the lymph node by cancer cells?
June 24th, 2009 at 5:47 pm
Hi Drs Berman and Netto:
Thanks for your timely and thorough responses to my December 2008 Q about my dad’s “golf ball size tumer”. He has followed with his urologist every three months as has been the plan, and last week’s exam showed 2 small recurrences in the bladder. Plan is for removal of the two spots in August. (Date set by my dad to work around vacations, etc.) His physician said the spots can be removed without great hurry, but should be done before Christmas, and that 70% of tumors reoccur, so the reoccurence was no surprise. The physician also said that the spots are so small that this surgical intervention will be “easier” for both him and my dad than the surgery in December was. That it would likely be same-day surgery. Do these facts, timelines, and statistics seem acceptable to you based on the small amount of information I have given you? My father is very comfortable with his urologist and feels satisfied with new diagnosis, plans, etc. Thanks in advance for your thoughts.
June 25th, 2009 at 11:54 am
Becky,
Thanks for the followup and glad things seem to be going smoothly.
June 26th, 2009 at 8:47 pm
Dear Dr. Berman,
My wife’s father was just diagnosed with bladder cancer. We don’t yet know the stage or grade. He’s 71. He had some bleeding during urination, particularly after any physical exertion. His doctor could tell by looking through the scope that it was cancerous, and said he would schedule surgery as soon as possible to remove the two tumors. The surgery is scheduled for July 21st. Is this normal? We were all thinking it would take a week or two at the most. My wife discussed it with her parents, and her father is not concerned about the wait. The rest of us are scared to death, and a month seems like an eternity to wait. Are we just being paranoid? Please shed some light on this for me. Thank you for your time.
June 28th, 2009 at 11:10 am
Rick,
Interesting and important question. Investigators have done studies to look for a relationship between the interval between diagnosis and cystectomy. My read of the published studies is that there’s no real added risk of waiting up to 3 months. The studies are confounded by the fact that there is a big element of judgement in play here. If the urologist sees something he/she is very worried about and/or the patient has very bad symptoms, the operation will probably happen sooner — so these patients might do worse than average and have less of a delay. One study actually observed worse outcomes in folks who were treated very quickly after diagnosis. As I invariably end up advising, when there is an issue like this that involves a judgement call by the urologist, the important thing is to talk to the urologist and ask how he/she decided on the treatment plan and also ask about any reservations you might have. In this case, it appears that your father-in-law is satisfied and may have had a satisfactory conversation with the urologist about the plan. I’m not sure how to address the possibility that Dad hasn’t been able to satisfy the concerns of you and your wife. Perhaps the abstract below will be helpful. It’s from a recent study at our institution.
A delay in radical cystectomy of >3 months is not associated with a worse clinical outcome.
Nielsen ME, Palapattu GS, Karakiewicz PI, Lotan Y, Bastian PJ, Lerner SP, Sagalowsky AI, Schoenberg MP, Shariat SF.
The James Buchanan Brady Urological Institute, The Johns Hopkins Hospital, Baltimore, MD, USA.
OBJECTIVE: To examine the association between the interval from the last transurethral resection (TUR) to radical cystectomy (RC) and bladder cancer-specific outcome, as the decision to proceed to RC for an individual patient is complex, and recent reports suggest an interval from diagnosis to RC of >3 months is associated with adverse outcomes. PATIENTS AND METHODS: The records of 592 patients who had RC were reviewed; the interval from the last TUR was analysed as both a continuous and categorical variable (<3 vs >/=3 months). Logistic regression and survival analyses were used to evaluate the association between the interval to RC with pathological characteristics and clinical outcomes. RESULTS: The mean (sd) actuarial cancer-specific survival was 70.5 (2.3)% and 60.7 (3.2)% at 3 and 7 years, respectively. Overall, the median (range) time from TUR to RC was 1.8 (0.3-11.6) months. The interval to RC analysed as a continuous or categorical variable was not associated with extravesical or nodal disease, lymph node metastases, disease recurrence, overall or cancer-specific survival. The results were similar in the subgroup of 320 patients (54%) with clinically muscle-invasive disease. CONCLUSIONS: These results suggest that a reasonable delay from the last TUR to RC is not independently associated with stage progression or with decreased recurrence-free or disease-specific survival. These findings might have important implications for trial design in the ongoing evaluation of neoadjuvant regimens. Nevertheless, we see no reason to advocate anything less than the timely consideration of definitive treatment for patients with high-risk bladder cancer.
June 30th, 2009 at 4:41 pm
My husband, 64, has Stage 4 “very aggressive” bladder cancer, with 4 lymph nodes involved (lung and abdominal areas). He underwent the BCG treatment, but the tumor grew back during that treatment. Surgery was then planned, but a Pet Scan showed the lymph node involvement, so chemo became the best option. He’ll soon be completing a six-round course of chemo (Cisplatin and Gemcytobin). Meanwhile, a recent exam by the urologist during cauterization of the tumor revealed that the tumor appears to be growing back. A CT scan is planned for next week. Doctors have said my husband is not a candidate for radiation, and that surgery is not an option either (at least not for curative purposes). The oncologist is referring us to a Hopkins specialist, in hopes there will be a medical trial in which he can participate. Cannot find any mention of such a trial on the JHH bladder website. We are feeling disheartened–what other options might be available that we haven’t heard about? Barring that, what’s the best course we can take to mitigate the end stages of this disease? Thank you.
July 8th, 2009 at 10:54 pm
My 14 year old grandson is diagnosed with bladder cancer and doctor said he has the bladder of a 60 yr. old, and he has never seen anything like this. Tumor was removed and biopsied. He is consulting with another specialist, but we are concerned the longer the family waits the worse it is for Tyler. How can this have happened? My daughter did conceive in Africa and was, of course, on anti malaria drugs, etc. prior to going to Africa. Could this have affected the fetus and done something? Just asking?? We are grabbing at straws. Please help. Thank you. We are looking into Johns Hopkins as a consideration since it is about 2 hrs. from us.
July 9th, 2009 at 8:13 am
Fran,
You find some relief in the fact that with appropriate evaluation and medical management, pediatric patients with bladder cancer do very well. It’s very rare that someone in that age group gets bladder cancer, so risk factors are difficult to determine but generally involve congenital (birth) defects involving the bladder and associated surgeries. A significant proportion of cases have no known cause. I personally think that foreign travel and anti-malarial drugs should have no relationship to the case. So I suggest you contact a pediatric urologist at an academic center and go from there..
July 11th, 2009 at 5:43 pm
I am a 60 yr old, 5 year Uterine cancer survivor. I was released from my gyn/oncoligist in March. My Ca-125 was always in low range after surgery. Something told me to get another one in end of May. Even though in lower range in Oct. (12) it doubled in March and again in May….. seemed suspicious and family Dr. sent me back to oncologist. CAT scan showed tumor and Dr. could also feel on wall of bladder. Is this likely to be the same Uterine cancer or a different Bladder cancer ? I’m making a list of questions for him. The plan is to have surgery on Aug.10. I will participate in a study where a sugar die will be injected and then hand held probe will check for any other cancer to help surgeon remove as much as possible. Should I have more tests ie. cystoscopy or is Cat enough? Also is it better to have a Urologist do surgery or is my gyn/oncologist OK? This will be at Ohio State University Hospital and my Doctor is one of top teaching Dr. Also what about Chemo to reduce tumor before surgery, would that be good? He did mention Radiation and Chemo but I believe this is after. Would he Radiate in surgery? He said he would know if ureter is involved when he gets in……possible resection but not certain. Thank-you for any advice you can give me or questions to ask him.
July 11th, 2009 at 5:53 pm
Dr. Berman,as a follow up to my questions, I also have family history on fathers side of polysystic kidney disease(my aunt and two cousins) . Could my cancer come from kidneys and should we do follow up on that? Nothing has shown up in any other family members( my generation)Thank-you very much for any help.
July 12th, 2009 at 4:24 pm
Cindy, Sorry to hear about your situation, which in general is probably most likely to be a recurrence rather than a new kind of cancer. Sounds like you have good care and that your questions are good ones to direct to your doctors.
July 13th, 2009 at 6:01 pm
My father is 79 years old and has just been diagnosed with papillary urothelial carcinoma, high grade. Pathology indicates, “tumor invades lamina propria but muscularis propria is not invaded.” He is scheduled for surgery next Wednesday to completely remove his bladder and prostate. Is bladder removal normal for a tumor that has not invaded the muscularis propria? Also, after bladder removal, would he need any other form of treatment, e.g., chemotherapy?
July 14th, 2009 at 1:49 pm
Last week my 46 y/o husband had a tumor removed from his bladder. We won’t get the results until next week. My question is–are there special considerations and/or treatment options for diabetics? He was diagnosed with Type 2 Diabetes in February of this year. He is only on oral meds. If it turns out he needs cancer treatment, what type of questions should we ask?
July 16th, 2009 at 2:17 pm
Dr. Berman,
My 18 year old son was diagnosed with noninvasive low-grade papillary transitional cell carcinoma on June 11, 2009. The tumor was successfully removed by TURBT and he is doing well. He is an otherwise healthy young man who does not smoke and was not exposed to any metals. My husband and I do not smoke. There is no family history of bladder cancer.
Looking on the CDC website, the rate of disease for men in his age group is .4%.
From your extensive experience, can you offer any explanation of how this can occur? What his risks are for recurrence or risk of other cancers (colon, prostate etc)? Also,
I have two other children, is there a genetic risk in this type of cancer?
Your assistance is greatly appreciated.
July 18th, 2009 at 6:09 am
Dear Dr. Berman,
Thank you for taking the time to help put our minds at ease. I appreciate your time and effort very much .
July 19th, 2009 at 9:03 am
Rick, You are most welcome.
Kathie, When you have a very rare diagnosis, such as bladder cancer in an 18 year old, you may want to seek a second opinion at a major academic center to make sure the diagnosis is correct (have the pathology slides reviewed) and, if so, discuss the treatment plan. As for genetic components, it is not likely to be a concern, but your doctor should go over your family history. Also, check out what I said to Fran in an earlier post, about very young patients with bladder cancer.
July 27th, 2009 at 1:56 pm
Dr. Berman, I think I might have bladder cancer, and I’m getting very scared at the moment. Whenever I need to urinate, I can’t, my urine comes out way to slow, and doesn’t come out at all sometimes. This is really scaring me, I take unusual rounds to the washroom, and only to find out that I can’t urinate most of the time at all. Please help me..
July 28th, 2009 at 6:06 pm
Mr. Kalm,
This sounds like an urgent medical condition that should be evaluated by a doctor immediately. I recommend you go to an emergency room or see a urologist immediately.
August 1st, 2009 at 12:45 am
I am a 43 year old non-smoker with no history of bladder cancer. I experienced a gross hematuria after vigorous exercise on July 5th. Urologist found microscopic blood in urine 4 days later. My cytology report came back showing “atypical cells in clusters suspicious for uro neoplasm.” Went to MD Anderson for workup–CT Urogram showed small stone in ureter. Cysto under general anesthesia was clean–in fact surgeon said my bladder looked “perfectly normal.” He thinks everything is fine–says I should do FISH as follow up. I remain deeply concerned–should I be?
August 1st, 2009 at 10:00 am
Jon,
From the pathology perspective, your story and your urologists’s recommendations sound very reasonable. Clusters of urothelial cells is an abnormal finding in urine cytology and can be associated with a neoplasm. It is particularly difficult for pathologists to distinguish benign clusters from low grade neoplasms (the least dangerous kinds) under the microscope. FISH (fluorescent in situ hybridization) tests can help, because they detect genetic abnormalities that are more specific for cancer and cannot be recognized by routine microscopic examination. If a patient has a good reason to be shedding urothelial cell clusters, such as a ureteral stone, this provides an explanation for the tissue clusters and lowers the degree of suspicion that there may be a neoplasm.
August 7th, 2009 at 8:49 pm
My husband has had gross blood in his urine for a least a year. He has had a number of procedures…checking the urthea, kidney, bladder, and prostrate. Everything has come up fine….no tumors anywhere. The last Dr. said he would like to do exploratory surgery. My husband is not in favor of that. He has no pain….when urinating, in stomach, etc. Where should we go from here. He as been to Drs. in our neigborhood hospital and at a university teaching hospital.
August 22nd, 2009 at 10:51 am
my cousin 42 years old , father of three, heavy smoker, has bladder cancer, 7 months ago he had painless hematuria, on cystoscopy they found a 9 mm lesion, histopathology said: mixed small cell non differentiated cancer. no mets were found at that time. his doctors explained to him the bad prognosis and they decided to start with neoadjevant chemotherapy, he took 3 cycles, then had a ct , showed no progression of his primary tumor, and no mets. at this point he was reffered to another more onco specialized hospital, where cystoscopy showed no residual or recurrent tumor. they reviewed the slides of the first hospital and agreed upon the same un-usual histopathology another ct two months after showed no progres sion either! the referral hospital are not starting any treatment now, saying : treat what if we don’t have a visible tumor. they are doing another cystoscopy this week, and seems are planning to keep following up until the tumor grows enough to be seen. is that right? do you think my cousin is getting his “best chances”?
is the prognosis as bad as books say? if something is supposed to kill you in two years. why isn’t it progressing in 6-7 months? please help.
August 22nd, 2009 at 2:43 pm
another question: what’s the rule of CT-PET in bladder cancer? is it the best modality to rule out residual / recurrance? or is CT alone enough?
August 31st, 2009 at 11:25 am
NB: This post is being resubmitted because of a correction to paragraph 5 (the date should read “Early 2009:, not “Early 2008″ as in my original transmittal.
Topic: Is there a prudent and preferable alternative to radical cystectomy in a setting of confirmed high grade, non-invasive disease?
Dr. Berman and colleagues,
Thank you for making yourselves and your expertise so generously available.
My purpose in writing is to have your reaction to a current diagnosis and care plan which includes radical cystectomy scheduled to be done in a couple of weeks at Cleveland Clinic.
I’ve just come upon this forum, and while I have utmost respect for and confidence in the team at Cleveland, I know they would encourage me to engage the thinking of other experts — especially those of you at Hopkins.
I’m a 63 year old male in fundamentally good health, without a history of hospitalization or of the need for any medications. With major surgery immanent, your review of my case would be greatly appreciated:
Early 2009: A few tiny clots which passed painlessly during urination led to a TURBT at Mayo (Dr. Todd Igel in Jacksonville). A single +/-2cm tumor was excised with a patholgy finding of high grade/G3 cells, however viable muscle tissue was not present in that sample.
April 22: A second procedure was done in Cleveland by Dr. Steven Campbell. Pathology of that procedure confirmed G3 and CIS, and also found muscularis without any evidence of invasion (pathology analysis by Dr. Ming Zhou).
Extensive screening revealed no signs of disease elsewhere.
May-June: A six week course of BCG was administered.
July 24: In a third cystoscopy Dr. Campbell found the bladder to be healthy in appearance, but tissue samples of what looked like only mild irritation again revealed the presence of G3 and CIS (pathology by Dr. Lynn Schoenfield).
Dr. Campbell and his assistant have been generously thorough in reviewing the findings and the care plan options. While they would support whatever decision I make regarding treatment, they identify cystectomy as the most prudent course of action, feeling that the bladder has consistently defined itself as high risk.
To provide me with an expert opinion from someone not directly involved with the urology team, an appointment with Dr. Derek Raghavan was arranged. That distinguished doctor was thorough in his own review and fully concurred with the methods and conclusions of his colleagues.
As the subject of such very good care from such very good people I feel complete respect and gratitude, and it’s only the seriousness of the pending surgery combined with Hopkin’s singular reputation that have prompted this request for one last perspective that would either confirm the proposed procedure or point to a prudent and preferable alternative.
With my sincere thanks for your attention,
Steve
September 1st, 2009 at 12:54 pm
Steve,
As I’ve said before, I don’t manage treatment for bladder cancer and as you can imagine, I can’t provide personal consultations via blog. I can say that in general the narrative you are presenting sounds like a reasonable one, in that high grade carcinoma in situ (CIS) is often treated by instilling chemotherapy and/or BCG into the bladder. When such approaches don’t work, it is very risky to leave the CIS in the patient, and cystectomy is likely to be the only alternative.
September 1st, 2009 at 2:45 pm
Dr. Berman,
Thank you for your thoughts on this matter. I appreciate having had this chance to seek your counsel.
Steve
September 1st, 2009 at 4:19 pm
dr.Berman;
reading Steve’s story and your comment , i realize i was asking for a personal consultation and treatment plan too! however i hope you can understand how desperate people in the “rest of the world” are.
let me re-phrase my question:
how confident would a qualified pathologist be calling such type of cells (high grade small mixed cells) ? isn’t it quite an unusual diagnosis that you don’t see everyday? should we seek another opinion? could it be wrong?
aren’t they supposed to be fast growing cells. very aggressive ones? how can you explain no growth for the last 5 months.
thank you.
Rania
September 1st, 2009 at 9:01 pm
Rania,
My impression is that small cell carcinoma of the bladder is so rare that there is not enough scientific data to know what works best. The impression with these cancers in other organs (lung) is that the very small lesions are curable with radiation and/or surgery. For most cases, however, they have already spread by the time they are detected, so battling them with chemotherapy is the best option. Based on this notion if a patient’s doctors think that a tumor is in the very small/low stage category, then maybe local therapy (radiation and/or surgery) would be worth considering. If it’s a locally advanced tumor, I would think that these options, particularly a cystectomy (a very major surgery) would be a lot to go through with less possible gain.
September 2nd, 2009 at 2:40 pm
Dr.Berman;
thank you very much for your reply. i totally agree. and that’s what i was expecting when he was first diagnosed with small cell ca-UB, 6 months ago.
but now that six months have passed with good response to chemo only, and no signs of local or distal spread of the tumor by CT and cystoscopy (though it was invading the propria in the first biopsy) i’m not sure anymore.
what if it wasn’t a small cell ca , could it be something else, especially that he responded very well to chemo? i read that lymphoma can look the same! is it an easy call from a pathologist point of view? they said a neural marker was positive! kindly explain.
Rania
September 4th, 2009 at 1:38 pm
Rania,
You are absolutely correct that several other types of cancer look similar to small cell carcinoma under the microscope. Neural markers are a big help in making certain that the cancer is not a lymphoma. Often some lymphoid markers such as CD45 are added (and expected to be negative in carcinoma) to be extra certain.
September 9th, 2009 at 12:01 am
Dr Berman;
age 74, blood in urine about 5 or 6 times since feb. 2009, clears up at next urine. Had left kidney removed 14 yrs ago (8/95) , contained, no treatment
required. Prostate cancer diagnosed 2/04, treated with 44 proton radiation
treatments 4/04 completed 6/04. Urine specimen clear today, abdominal cat scan with contrast scheduled this week.
Do you think the radiation may be causing this blood, also have been taking a baby asprin forat least 6 yrs. three times a week. Any possible connection. I stopped the asprin last wed. 9/2 when i saw blood.
Urologist said he may do a cystoscopy after review of abdominal scan.
Never had that, is there any test less invasive and as good in diagnosis.
Most appreciative of your professional comments.
Th
September 13th, 2009 at 2:25 pm
Mr. R.,
Radiation cystitis is a common cause of blood in the urine, and aspirin can inhibit blood clotting and enhance bleeding. Cancer is another cause of blood in the urine. Considering your history of cancer in the kidney, I imagine that this would be a concern, particularly if the cancer ws urothelial carcinoma rather than renal cell carcinoma. If bladder cancer is a concern, cystoscopy is a much more powerful test to detect it than any non-invasive test.
Regards,
David Berman, MD, PhD
September 18th, 2009 at 6:47 pm
Hi, I had six rounds of bcg following cis diagnosis (no tumors just irritative voiding symptoms, biopsy showed cis in the lining, not invasive). This week, six weeks after last bcg, had a cysto and cytology. Cysto showed bladder looked healthy, and cytology said “benign, no cancer”. I know cis will likely recur, but is the clear cytology report a good indicator that bcg worked well? How reliable is cytology? I am going for bcg maintenance per SWOG protocol starting next week. Thanks for any comments! Micky
October 3rd, 2009 at 9:36 pm
Hello, I am very new to this whole Bladder Cancer world. My husband is 44 years old his doctor discovered blood in his urine and ordered a Urine Cytology. We got the report back and under the final diagnosis it stated Highly suspicious for papillary transitional cell carcinoma and strongly recommended a Cystoscopy. I have been on the web looking for anything that suggest that this means he has Bladder Cancer or does it mean something else. I have a friend that is a nurse that keeps telling me that this test does not mean anything and that it is just an infection and take a antibotic. Please help.
October 3rd, 2009 at 9:49 pm
Paula,
The cytology report as you describe it expresses concern for cancer, not infection. The report does not reflect a diagnosis, just a suspicion. Based on that suspicion, a more thorough test (cystoscopy) is recommended. Hope this helps.
October 3rd, 2009 at 9:54 pm
Another thing we need help with:
Doctors at Johns Hopkins Hospital are working night and day on new and better ways to treat and diagnose bladder cancer. Other cancers recieve much more research money than bladder cancer, making it a difficult area to work in. If you feel that our efforts are worth supporting and you can spare $20, $40, $100, or more, please click on the donation link on the upper right portion of the page at http://apps.pathology.jhu.edu/blogs/bladder/
October 3rd, 2009 at 9:55 pm
Dr. Berman,
Thank you for your quick response, could you please tell me what these cells mean and if this report looks good or would it be considered for cancer:
Microscopic Description: Two preparations are made and examined. Both preparations are highly cellular. They are composed of individual cellular elements displaying nuclei with chromatin clumping and clearing. At times, the nuclei very greatly in size and shape from cell to cell. In other areas, the nuclei are greatly enlarged and in some cells multinucleation is noted. At times, groups and clusters of cell occur suffesting a papillar growth pattern.
I
October 7th, 2009 at 11:32 pm
My husband was recently diagnosed with bladder cancer . Had a turbt and found a very large tumor invasive. Did a pelvic ct and found that left kidney atrophied and rt. kidney has a large tumor. He has numerous health issues copd, cad/pad, high bp, diabetes, high cholesterol, 100lbs. overweight, sleep apnea and had polio(iron lung) when he was a child. The urol. gave him less than a yr. or remove kidney and go on dial. Before kidney issue was discovered a radical bladder resection was suggested but may not be a possibility as well as chemo and radiation because of poor health. During the turbt he did have an episode of not breathing so this is a concern for a long surgery as a 40 min procedure proved difficult. Is there any hope???
October 11th, 2009 at 7:04 pm
Cheryll,
Sorry for the very difficult circumstances you and your husband face. If your question is whether or not surgery is worth the risk, I think that question requires a thorough evaluation by a very experienced team. As to whether or not there is hope. I think there is always hope.
October 11th, 2009 at 7:10 pm
Paula, I’m not sure I understand your question.If you’re asking whether the microscopic description is in accord with the diagnosis you mentioned in your earlier post, it is. It doesn’t mean that it’s correct– I can’t confirm the diagnosis without reexamining the slides on my own.
October 15th, 2009 at 11:58 pm
my mother is enrolled in hospice with advanced bladder. We are hoping that she will stay in her home until she passes. She has had episodes of bleeding for which she has been hospitalized. She does not want more transfusions or hospital stays. We know that she is at risk for another major hemorrhage. We need guidance in how to care for her at home when she does start to bleed again. Please advise.