BCG side effects years later

4 years 1 month ago #53605 by shihtzudaddy
BCG side effects years later was created by shihtzudaddy
My husband was diagnosed with bladder cancer in 2012. He received the BCG treatments and the cancer had not spread. It's been 5 years with scope visits every 6 months now and we are keeping it at 6 months rather than 1 year for precautionary reasons.

Since January 2017 he has experienced breathing / cough issues. xrays, CT, and visited 2 pulmonary doctors. The first doctor (not a good one) felt he had Idiopathic Pulmonary Fibrosis. Pulmonary doctor 2 did the overnight breathing monitor and ordered oxygen at night. We are going to Duke Pulmonary Hospital Monday for a full check up and see what they have to say. Duke is 5th in the nation for pulmonary.

Duke sent very lengthy forms to complete for the visit. So many questions but one stood out. There was a list of 7 medications/treatments listed that we were to circle if he had ever received - BCG was one! I then googled BCG treatment causing lung issues. From several reliable sites I am seeing that there can very likely be a connection to lung issues - TB for one. Has anyone experienced lung / breathing problems after having BCG treatments? As I stated he is 5 years out from the treatments. He has been short of breadth and had a persistent cough for several months. I'm concerned the BCG may be the cause for the lung issues.

Can anyone share their thoughts? We just put this connection together later yesterday after looking over the forms. Therefore we have not had time to ask a doctor about the possibility. We want to know what fellow patients have experienced. Duke doctors will likely have detailed answers but it never hurts to get patient information.

Please let me know if ANY lung issues have occurred after BCG.
Thanks! Kathy & Toby

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4 years 1 month ago - 4 years 1 month ago #53606 by Alan
Replied by Alan on topic BCG side effects years later
These symptoms and questions are way above most of our abilities to diagnose as we aren't doctors. Also, I never heard about a side effect years later. That said, it may be good to explore a tuberculosis finding as some of the symptoms seen to relate and BCG are weakened TB germs. If you discover anything please continue posting as we all learn from each other! Hope you find answers.

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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4 years 1 month ago #53607 by shihtzudaddy
Replied by shihtzudaddy on topic BCG side effects years later
I will keep updating after we go to Duke on Monday. I am finding that it is possible for the TB strain to enter the body and present itself years later. I do not know if that could cause the cough and shortness of breath. It's just odd that there were 7 drugs/treatments listed and BCG was one - related to lung problems.

Any one who has lung issues after BCG treatments please post. I'm not looking for a medical report but a simple account of what lung issues were experienced. Thank you

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4 years 1 month ago #53608 by sara.anne
Replied by sara.anne on topic BCG side effects years later
I moved your post into "Non-Invasive Bladder Cancer" where more people who have had BCG will see it.

It is,of course, possible to get TB from BCG, but it is incredibly rare, and the case reports I have seen seem to indicate that it is not possible to prove definitively that the patient did not have asymptomatic TB before receiving BCG. Be careful of "Dr. Internet." The cases listed there are of interest because of their extreme rarity. Of course, this needs to be considered by a thorough pulmonologist which is why the question is on the forms.

Here is a good summary of BCG side effects

Physicians learn in medical school a pertinent saying "If you hear hoof beats, don't think of zebras!"

Hope they don't find a zebra on Monday!

Sara Anne

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