BCG Immunotherapy and the consequences of serious infection

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I am a seventy one year old man. At sixty nine I was diagnosed in early 2019 with an aggressive bladder cancer tumor. I had it removed in May that year, followed by two TURBT operations. Later on in the same year I began a twenty seven dose course of BCG installations. I have to say at this point that Covid did interrupt this treatment in 2020. However, it was restarted again after the first lockdown under controlled procedural conditions.

In September 2020 I began my 13th/14/ and 15th doses. Unfortunately the 13th & 14th Doses swelled my prostate, which I now understand is a common side affect. Unfortunately as a result of this, at the 15th Installation the nurse could not insert the catheter and had to use a rigid catheter for the installation. This caught me internally and I bled, as a result the BCG went straight into my blood stream.

This was at 2-00 pm in the afternoon on the 2nd of September 2020. by 10-00pm that evening I was very ill with all the symptoms of a major reaction to the BCG. My wife phoned the hospital and the following day I was admitted onto the urology ward and given antibiotics for a urinary tract infection. after five days I began to improve but was still having spasmodic attacks of fever and night sweats, all of which were reported to the doctors. As a result I also asked them if there was any chance that the BCG had given me Tuberculosis, to which the answer was always no.

In August 2021 I had a full body bone scan for a chronic lumber spine problem, not associated with any of the above. When the Oncology and urology doctors saw the scan they immediately called me back into hospital on the 31st October 2021. They told me that there were some areas in my spine at T11/T12 which were showing signs of abscesses and they needed to explore them. I remained in hospital for three weeks until they took biopsies of my lungs and of the infected areas of my spine. I was then discharged and told that there was a possibility that I had TB in my spine but as it was slow growing it would be at least ten weeks before the results of the biopsies were known.

In January 2020 the results of the biopsies were back. The Lung biopsy was clear but the spine biopsy was positive for TB and that it was BCG orientated.

I then began the course of specific antibiotics which I was told I would be on for a minimum of nine months!

Before I go any further I should clarify that the guidance I was given prior to having and agreeing to the BCG treatment did mention that If there was a side affect of the symptoms I had, then I should seek medical advice immediately as antibiotics may have to be administered. Which I did because  I was admitted back into hospital when it happened. 

What the guidance did and still does not mention is that if such symptoms transpire, the antibiotics to which are being referred to are very strong and you need to be on them for a long time. The guidance does not also go into any detail of what can happen when the TB virus attacks bone which it was doing in my case.

Now under a doctor for infectious diseases, she referred me to see a spine specialist to ascertain how much damage had been done. In March/April 2022 I had several consultations with a spine specialist who confirmed to me that my spine was on the verge of collapse and that I needed urgent surgery to support it! )n the 4th August 2022 this surgery took place and the infected vertebrae were removed and a cage with rods and screws were inserted to support my spine.

My main reason for posting this account is to raise the profile of BCG treatment and the consequences of what can happen if a patient sufferers the side effect symptoms which I did, and the true cause goes undiagnosed, allowing the infection to spread and cause irreparable or incurable damage.

My feeling is that doctors are not fully aware of these consequences and are not fully conversant with a TB infection caused by BCG. Certainly my doctors were not aware of the consequences and were in total denial that BCG was the cause of my infection until it was too late.

Thankfully I am now recovering albeit slowly. however, the trauma that this has caused has been immense and I would not wish it on anyone. The main thing for me is the strain it has put on my heart which now needs further treatment and medication.

I am not saying that BCG is not a useful method of immunotherapy. But I would definitely advice and patient who might be offered it, to ask the questions about the risks and the consequences of those risks should an infection like mine transpire.

As a result of my case and that of another I know of, the hospital where I was treated have reworded their patient guidance to be more emphatic and the specific issue of infection is now in bold type. Cancer research have also changed their guidance wording. Non of it however details the specifics of the TB treatment or consequential damage to bone so it is still up to patients to ask the questions and have the risks explained.

I have been very unlucky and part of a very small percentage to have had this happen. However, in the same hospital trust there have been at least two cases in the past two years and for me this is two too many. Had my doctors acted on the symptoms I had in Sept 2020 and referred me to infectious diseases I would not have had to endure the trauma that this has caused or the major spinal surgery. Early intervention is essential if the symptoms occur and doctors have to be more aware of this.

Regards Bearsticks

  • I’m so sorry to hear this Bearsticks,that is a very traumatic experience.It is good that you have brought it to people’s attention.Best wishes for your recovery.Jane 

  • Thank you Jane for your kind words. Thankfully I have heard today that the biopsy taken when I had my surgery has not grown any cultures of the TB infection. Which is great news.

    keep well John

  • That is good news,something positive to come out of such a horrible experience.Best wishes and you keep well too.Jane 

  • Hi John. Sorry to hear of the difficult time you have gone through. Hopefully you are recovering well. I wish you all the best going forward. Best wishes.

    Best wishes to All,   rily.

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  • Dear Bearsticks, what an awful saga of unintended consequences. Thank you for your usefully detailed post. I am certain that when my husband was given no such warning approx 5 years ago when he accepted 6 BCG. I am very very interested also about the enlargement of the prostate being a further consequence, as he has never been warned of that either, and I suspect this may be part of why he has needed to get up in the night all this time.

    As he had a new papilloma straight after the 6 BCG, he switched to Mitomycin into the bladder and now I am even more glad he did. [And has been clear for several years on 6 monthly checkups]. I have never heard of a rigid cystoscope being used to force entry for administering BCG and I think it should not be allowed: it is too risky that it will cause just what it did for you. Have you claimed against the hospital? I fear that this is the only course of action that will lead to a real improvement in procedures. Many hospitals apparently do not even offer the Mitomycin alternative, for whatever [£?] reason.

    My husband has had strictures for many years but they manage with a fine catheter. Your case is yet another saga of doctors who do not adequately listen to patients, no matter how marvellous some of them are.

    Very best wishes for your ongoing recovery, 

    Denby

  • Sad to hear your story, Bearsticks. I have previously heard that there is a risk of TB from BCG therapy. Certainly it is not treatment to undertake lightly, although many would regard it as a lesser evil compared to bladder removal. BCG is proven more effective than mitomycin (which can have side effects of its own). 

    With all these choices, it is a matter of weighing up risks & benefits, but patients should be fully informed where decisions need to be made. 

  • What a terrible experience!! I am truly sorry to read what happened to you... I have had BCG and tomorrow I should have the last instillation of the first year  (15th) since I was diagnosed in June 2021. I did read about BCG going in the blood stream and causing TB, but to be honest I thought it would have been just hospitalisation and a lot of antibiotics.  Did not read anything about bone damage.... very worrying. The probability they say is very low so one is really conflicted between risking to get TB and ... getting the cancer back? Doing chemo? But you are perfectly right: I don't think that there is much expertise about BCG induced TB. For example in one article I read that if you get a temperature you should call your hospital immediately  and also if you bleeding during urination. In another  they say that a temperature is a good sign, indicating that the immune system is doing its work and that bleeding is a normal side effect.... I had some temperature (37.5) the evening of the last BCG. And I was really feeling ill, like a bad flu. Weird as until now I have had very little symptoms.

    Anyway, glad to hear you are on the mend. I hope it's all going to be better and better.

    Regards

    Marco

  • Hi Marco,

    thank you for your kind words. I believe that BCG does work and like you for the 14 installations I had there were some flu like symptoms but in 48 hours I was over them. It was at the 15th where things went wrong and I became really ill, seriously thinking it was fatal. They were serious symptoms and unfortunately the doctors failed to diagnose the significance of what was happening or the consequences.

    But yes if a patient needs TB antibiotics they will need to take them for at least nine months and they alone take some getting used to until your body adjusts to them.

    I hope all goes well for yoJohn

  • Thanks John, 

    By the way, my 15th will be Wednesday  mistake in my previous. My nurse is so gentle that so far I have never felt a thing and most of the times I only realised that it was done when she was telling me....!

  • Hi Bearsticks 

    My experience was very similar as yours. I was cut to on the BCG process , later in the day my reaction was very intense and far beyond the normal BCG post treatment,  anyways I toughed it through. Three days later I noticed my appetite was fading and getting I was a bit puffy going up the stairs  I decided to go to A&E as a precaution as I just didn't feel right  . It turned out I had a deranged liver and was admitted.

    I had exactly the same experience as yourself ,wouldn't believe in a crossover infection and they were almost rude at the suggestion  Treated me for a urine infection which I  didn't have,one week later had CT scan which showed nodules on lungs, but even then the medical department would not accept TB but rather secondary cancer . However one Urology consultant believed in what I was insisting and after a strong conversation with his counterpart consultant medical(I heard the telephone conversation)was transferred to specialist disease hospital. Within 4hours of arriving I was taking my first TB medication. Within 4 days cultures return showing positive for TB

    I have been in Hospital 6 weeks and it is a particularly difficult route to recovery, however I am now responding to the medicine  ..

    My BCG nurse knew she cut me and told me I will have blood in tissue when I get home 

    I think if there is any uncertainty to the process in the insertion of tube the process should be cancelled and tried again after healing time, surely the risk just to carry on and hope for the best is just not good enough 

    When I searched for "cut in procedure" I found your article and this I believe help me pushing for a transfer to specialist hospital,  and getting the TB treatment I needed for that I thank you sir