BCG - Been exposed to Tuberculosis

11 years 3 months ago #30205 by mollyspal
BCG - Been exposed to Tuberculosis was created by mollyspal
I have been diagnosed with superfical blc and a golf ball size tumor removed with a TUR a stent was put in for 6 weeks and we are now in a 3 week waiting period after the stent was removed waiting for my first BCG treatment next week. Here is the question, about 13 years ago I was exposed to a person with live Tuberculosis, I did not get the disease but got the virus, what ever that means and I had to be treated for six months with a specific antibiotic for TB. Now, I can not take the TB skin test because it will always show positive. I have to have a chest x-ray every 2 years which has always been negative. I have informed my Dr. of this and she advised me that because of it, since my cancer was only superfical she will only do the 6 initial BCG treatments and not do any follow up treatments because she can not do the skin test on me. She will then follow up with scopes of my bladder to check for recurrance. Has anyone ever had this problem?

Turbt Dec 2009
BCG every 3 months since Feb 2010

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11 years 3 months ago #30212 by Alan
Replied by Alan on topic BCG - Been exposed to Tuberculosis
Molly,

Someone with more experience will eventually enter with a better answer. For now, I'd just be sure your URO is up to date with your past. Taking BCG includes a risk of contracting TB, albeit a small risk. Hence the urine test before instillation to be sure you don't have an infection. After the instillation they will tell you to call if you have anything higher than a low grade fever (fever being opne of the possible side effects).

As far as 6 treatments. I have read about a small minority that believe 6 is enough. A large majority believe in a "maintenance" protocol over several years. Some have had once a month for a year (I believe some of our Canadian friends get that type). Mine had me take 6 weekly, 6 off then 6 more and that was it. His reasoning was each instillation incurs some risk. I am almost 2 yaers out and clean.

Basically, everyone case is different from types of tumor, size, quantity etc. I like a doc that is cautious, conservative and up to date which yours sounds like one. Keep posting and someone will have more insight, be an advocate for yourself and read what you can.

Am enclosing a link for one of the better files on BCG: www.urotoday.com/prod/pdf/eau/05_TaT1_Bladder_Cancer.pdf

Alan

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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11 years 3 months ago - 11 years 3 months ago #30213 by Alan
Replied by Alan on topic BCG - Been exposed to Tuberculosis
Molly,

Someone with more experience will eventually enter with a better answer. For now, I'd just be sure your URO is up to date with your past. Taking BCG includes a risk of contracting TB, albeit a small risk. Hence the urine test before instillation to be sure you don't have an infection. After the instillation they will tell you to call if you have anything higher than a low grade fever (fever being opne of the possible side effects).

As far as 6 treatments. I have read about a small minority that believe 6 is enough. A large majority believe in a "maintenance" protocol over several years. Some have had once a month for a year (I believe some of our Canadian friends get that type). Mine had me take 6 weekly, 6 off then 6 more and that was it. His reasoning was each instillation incurs some risk. I am almost 2 years out and clean.

Basically, everyone case is different from types of tumor, size, quantity etc. I like a doc that is cautious, conservative and up to date which yours sounds like one. Keep posting and someone will have more insight, be an advocate for yourself and read what you can.

Am enclosing a link for one of the better files on BCG: www.urotoday.com/prod/pdf/eau/05_TaT1_Bladder_Cancer.pdf

Alan

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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11 years 3 months ago #30214 by sara.anne
Replied by sara.anne on topic BCG - Been exposed to Tuberculosis
I am certainly not a medical expert on BCG. However, it does not make sense to me that your medical history would interfere with your receiving BCG treatments...and if it did, why would six be OK and not the maintenance? Statistics show that the maintenance regimen is much more effective that just an intitial series.

I would ask Dr. Donald Lamm, if I were you. He is a recognized expert in the use of BCG and has developed the protocol most of us in the US are on. He is wonderful about answering questions...something many doctors do not do. Go to his web page
www.bcgoncology.com/drlamm/
and there is an "Ask Dr. Lamm" button on the left side.

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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11 years 3 months ago #30215 by Patricia
Replied by Patricia on topic BCG - Been exposed to Tuberculosis
Molly,
TheraCys should not be administered to persons with active tuberculosis. Active tuberculosis should be ruled out before starting treatment with TheraCys. A test for detecting Mycobacterium tuberculosis infection should be performed if PPD (purified protein derivative of tuberculin) status is unknown. A positive Mantoux test, by itself, is not a contraindication to using TheraCys but an assessment must be made regarding whether the patient has signs, symptoms and/or a chest x-ray consistent with active or latent tuberculosis that requires treatment with antimycobacterial drugs.
In other words he needs to run the tests or at least go to an infectious disease specialist who will run the tests and determine if you can take the BCG.
Pat

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11 years 3 months ago #30218 by wsilberstein
Replied by wsilberstein on topic BCG - Been exposed to Tuberculosis
As usual, Pat is right on. A positive PPD without signs of active tuberculosis (no symptoms [night seats, weight loss, cough] and negative chest x-ray) is latent TB. The treatment with isoniazid (INH) for 6-9 months is aimed at preventing reactivation TB later in life.
To the best of my knowledge BCG does not increase the risk of developing reactivation TB. In fact, BCG is used as an immunzation against TB in areas outside the US where TB is more prevalent.
In addition, I don't think the PPD would be a reliable way to decide if the BCG is causing a problem, since the decision must be made on the basis of symptoms. A negative PPD would not be adequate to decide that the BCG wasn't causing a problem if one was suspected.
Even though you need your urologist for his expertise treating the cancer, you need him to consult with an infectious disease specialist, who you should consult with as well. Then your concerns will be accurately addressed and an appropriate TEAM will be making the decisions. Don't forget, you're a member of that TEAM, so you need accurate information to make your decisions

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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