My husband who is 69 years old was diagnosed with Non-evasive bladder cancer. It is high grade CIS with two tumors removed with TURBT. He was scheduled for a 6 week treatment of BCG.. He had two treatments for two weeks.. the third week they cancelled his treatment, now they canceled again saying when they get the BCG they will call us.. Our doctor cancelled our appointment also.. He was on vacation when the results came in and was explained to us by a woman what the diagnoses was and the treatment he would have to have long term.
I know there is a BCG shortage but I read that those who are diagnosed with CIS should be a priority on the first round of treatment. He has had two treatments of BCG and now we are in limbo waiting for a phone call. The LPN giving the BCG treatments is the one calling to cancel. Is this acceptable or normal? I don't think it is.. We live in Florida , have Medicare and gap insurance . I have not read anywhere that people have had treatment stopped on the first six treatments with BCG.
Welcome, Sheena! Sorry you need to be here, but there are worse things!
It is true that there is a shortage of BCG. Only one company produces it for sale in the US and this is a subsidiary of
Merck. BCG is a biological product, just as vaccines are, and depends on the "goodwill" of bacteria for its manufacture. If something goes wrong, or contamination sets in, the entire process needs to be stopped and restarted. Merck has said that the shortage should be over by September. They have been severely limiting shipments so your husband is not the only one missing out.
The good news is that your husband has had two treatments and that should have at least started to kick up his immune system. There is no set protocol for BCG; often after several treatments irritation sets in and the treatments need to be postponed for several weeks to allow the bladder to heal. If bacteria are present in the urine BCG will not be given until that is cleared. This does not hinder the effectiveness of BCG. Your husband should be OK and the treatment should be available in the near future.
As for communication issues, was the information about his diagnosis given in person at an office visit? Could the woman have been a fellow urologist in the office? If your husband does not feel comfortable with this practice he could always seek a second opinion elsewhere. However, for the present, he is "in line" for the BCG supply with this office so it might be a good idea to stay put until he has had the six initial treatments. I assume that they will recommend maintenance treatments, which go on intermittently for about two years, so he might switch, if he is so inclined, before they start.
It is unfortunate that the urologist did not explain this possibility at the start.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you Sara.. I was very perplexed on the stopping of treatments after he was given appointments for the treatment. You have assured me that it will be OK and hopefully he will have more treatments when the shortage ends. I have tried to be positive about it with my husband and I don't want to show any alarm . I just needed some understanding and assurance that it will work out for us. Thank you for your quick response. After all you have been through it yourself.