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bladder cancer
Hey everyone, Im new here.I was dignosed with bladder cancer app a yr ago,went thru the treatments and have had a checkup every 3 months so far so good.Mine was low grade I guess a fish test showed positive and when they did biopsy doctor told my sister he didnt think I had it because he didnt see anything at time, but it turned out I did.Anyway I started out with one doctor which I was very happy with but he left so I had to choose another.The first doctor gave me a fish test every 3 months and looked into my bladder the new doctor said he did do fish test because once I had cancer it will always show positive?Does this sound right to anyone thats reads this.I have had 3 check ups one more and then I go to every 6 months,guess thats my biggest concern right now of what last doc told about fish test,I never really had any symtoms since I was 13 I was suppectible to urniary infection was always getting it and I have always frequently urniated as well,Im 53 and have done this for past 30 yrs or so.
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12 Replies
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John. Were are you in missouri, I live around Ft. LeonardWood. I’ve had BC for about 6 years now, mine was low grade to. I did the BCG treatments for 6 weeks and that was it , haven’t had any more ,but my cancer keeps coming back about every 9 months to a year.
T1,NO,MO battling bladder cancer since 2005
Hey patricia, I plan on finding out next week exactly what stage etc, at the time I didnt want to do anything but put faith in the doctor.when I had biopsy they never really saw anything, the doctor told my sister he was expecting biopsy to come back negitive because of not seeing anything. so anyway right now Im trying to gather information and knowledge so when my next doctors visit comes up I can have lot a questions etc to ask him.thanks to everyone here responding.It is helpful
John,
you really need to know what your stage and grade was at initial TURB. That report is available to you. I’m assuming if you had BCG you had a higher grade or multiple tumors that were non-invasive…but the standard of care is a second TURB. I’m guessing your cysto’s have been clean as far as the doctor can see with the naked eye.
A good second opinion if you can get there is in St. Louis ..Dr. Adam Kibel
http://www.siteman.wustl.edu/docprofile.aspx?memid=932&type=patient
pat
Dr. Donald Lamm, now in Phoenix, AZ, is one of the US experts on treatment of bladder cancer with BCG..(When I first was digging into this, and found Dr. Lamm’s web page, I asked my uro about him. He told me that Dr. Lamm is the REAL THING and that his recommendations are the gold standard for BCG treatment.) Go to
http://www.bcgoncology.com/treatment/bcg.html
And you can read, in laymen’s terms, about the recommendations.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks Sara. I’m learning now something I guess I should have done from the begining was to ask questions and read.I am from Missouri for those that ask.And yes I do believe it was the Bcg instillations,I took them for 6 weeks .My question now it what are you calling maintenance treatments,are you saying every 3 months you go through another round of the bcg instillations?and if so does anyone have problems with the insurance companys paying for this and how could I convience my doctor on this ? thanks again this comming week I will deff talk to my doctor and get more information.
John, one of the primary problems with bladder cancer is that it can/and does come back. I assume that you had BCG instillations after your diagnosis. This works very well for some types of bladder cancer and is not so effective for others. The recommended protocol is to have six treatments a week apart, and then maintenance treatments about every three months for up to several years. The statistics show that the chance of recurrence is MUCH less than with just the one series, assuming the type of bladder cancer you have is sensitive to this.
The recommended treatment also has an exam (cystoscopy) every three months for two years, before transitioning to every six months.
Your urologist will do cytology (checking for abnormal cells OR infections) on your urine with every exam. Not all do a FISH test each time if the other tests are negative. Cytology tests are not perfect, and can give both false positive results and false negative results on occasion. This is why doctors need to use all the other tests AND their own experience.
We always recommend that patients seek a second opinion at a center that treats LOTS of bladder cancer, since not all urologists are as familiar with the current practice in this area. The very BEST thing that would happen is that the cancer center would tell you that your doctor has everything well in hand and that you are receiving the very best level of treatment. The other thing you might discover is that you are not receiving the best treatments available. Then you would be able to make some educated decisions about your course of action.
While early, low grade or even high grade bladder cancer is very treatable, it can…and does…return. This is your life you are dealing with, and it is important to have the best care you can get.
If some of us seem a bit “pushy” it is because we have been there/done that…right where you are now…and learned some of this the hard way.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
John,
Where are you located? Several on here can help you by recommending the best place/doctor to go to for a second opinion that is closest to you.
Best wishes,
Anita
Anita
Forum Moderator
Caregiver
Hi John,
Please listen to Patricia! The first and most important part of your treatment is your doctor. Find one that has treated a LOT of Bladder Cancer. Your Uro is wrong about the FISH test. I have one with every cysto, and after two years of sucessful treatment, they come back “clear” I think the fact that your doctor said this, shows he does not treat too many cases of Bladder Cancer.
There is a wealth of information on this site, to help you through this journey.
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07John,
you really need to put your faith in a Urologist that deals with a ton of bladder cancer and that person is going to be found at a major cancer center, urological center or university center.
This is not your ordinary cancer and it requires expert pathologists as well as urologists to keep on top of it. If you tell us where you are located we can refer you to one of the best.
Here’s a paper on various tests for bladder cancer and as you can see there are many and there are many false positives and many false negatives and not all urologists especially those in a private practice are going to do the relevant tests. And many uro’s do not see the tumors or the hidden ones..white light cystoscopy is not the best even if you are the best.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2483317/
please let us help you and your sister navigate this for you and keep you healthy.
pat
Thanks Sara and doug for replies,When I was diagnosed I didnt really ask many questions,I put faith in the doctor and my sister has been a rn for over 30 years and she is a blessing.I really dont know a number for it he just explained we caught it early and as I said before when he did biospy he thought it would come back negitive because he never really saw anything.I had 6 treatments They filled my bladder and I had to keep it in for 2 hrs afterwards.What caught it was I went through a bout with urinary infection and this time I could not get rid of it so after 3 months of that The doctor told him I was going to have to see a specialist He did the fish test and when it came back positive then the biopsy.I was pretty well satisfied with first doctor he did a scope and fish test every 3 months and never mentioned that it would come back positive once I had cancer even after treatments.The second doctor does a scope and a test Im not sure what test but it shows results right away.When I asked him about fish test he told me he doesnt do it after the fact for that reason that it would show positive and then we would just have to have a biopsy.I have had 3 check up now and they say it looks good in there and the fish test did come back with abnormal cells but no cancer cells.Im sure after hearing from some of you I will probably need to talk to my doctor and get more information.At the time I dint want to know I just put faith in him and my sister.Doug if your talking taking a biopsy ever time they do a scope the answer is no ,they just scope and look around.I did ask first doctor if they did a biopsy with each scope and he said no that would be to painful to do without putting u to sleep.And do they still check you every 6 months after this long the doctor told me every 3 months for a year then every 6 months for a year then every yr after that.Thanks to both of you and for anything you can tell me.
John,
Welcome to the forum. I was diagnosed in May 2001 with BC. I have had cytology tests every time that I was scoped (every 3 months, now up to every 6 months). My last cytology report came back atypical and so they did a FISH test on my urine. This was the first FISH test that I ever had, BUT it came back negative…so you are right — it will NOT show positive forever after you have had bladder cancer. Perhaps your doctor is not doing the FISH test because it is so expensive ($2500, I think they told me). Is your doctor doing a standard cytology test each time you are in for a check up? Is there another local doctor you could choose? It sounds like your current doctor is not the doctor for you. I am 54, so we are close in age.
Doug
Anita
Forum Moderator
Caregiver
Welcome to our site…think you will find a lot of answers to some of your questions in the information parts of the site as well as here on the forum.
Got a few questions for you. You said that your cancer was “low grade.” Did your urologist give you any numbers to go with that description? That would tell us a little more about what you are dealing with.
You said you sent through the “treatments.” What were the treatments? BCG? If so, how many did you have? What symptoms caused you to get a diagnosis of bladder cancer? Where are you located?
I am sure that other members of the group will be chiming in to answer some of your questions about the FISH test results.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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