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
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.
