Back to all discussions

Follow up to second TURBT?

My husband was diagnosed in September 2021 with stage 1 bladder cancer, after 18 months of ignoring the bleeding and other symptoms. He has had a second TURBT 3 months ago to remove the remaining tumors. He has not heard back from the Dr.'s office and does not follow up on his own medical care. I feel that his stage 1 diagnosis could have been so much worse given the length of time before getting medical help. He has not heard back from the Dr.'s office. What is a normal length of time? Given that my husband will not advocate for his own health, I am often frustrated and scared. Any information would be helpful. Thank you, Concerned Wife.

  1. @Ruby Rumi, if you have not gotten biopsy results within 2 weeks, call the office. Even if they have to send the biopsies out to an outside lab, they should have them back within that time frame. It is critical that he follows up in the time period suggested by the doctor. I did not personally have this type of treatment as I was diagnosed at a late stage, but from what I've understood from others, it is unusual to leave the office without already having a follow-up appointment set up. I believe the typical protocol is TURBTs every 3 or 6 months, depending on the diagnosis and patient history, with office visits in between. When scopes are consistently clear and show no evidence of disease, they push out the timelines until there are signs of the disease again. Unfortunately, due to HIPPA, sometimes there is very little that a co-survivor can do to follow up without the appropriate signed releases at all the offices he deals with. He will need to learn to take an active role in his care for the benefit of his own life. ~Liz, Moderator, Team Member

    1. Hi , let me start by saying your husband is very lucky to have you by his side. Liz has given some very great advice. The doctor should have definitely reached out to your husband with more information or at least a protocol for follow up treatments. Every day matters. Working with your husband will be important, as Liz mentioned due to HIPPA and possible barriers for information seeking.

      Do you and your husband typically contact the doctors office together? Or are you calling on his behalf?

      1. @
        Ruby Rumi- I agree wholeheartedly with the replies you have received. It is important that your husband be concerned and take an active part in following up with his doctors. Is it possible that he chooses not to find out results or be more concerned? Some people feel that the less they know the better and then they do not have to deal with the reality. Please know that this is not judgement but concern that he is ignoring results because he might be scared of what he might hear. As he went for so long ignoring his bleeding symptoms that might might be his lack of concern and add to that the fact the there has been no follow up appt. Because you are concerned I would call the doctors office and tell them that you and your husband need to have the results following his TURBT. Make some noise. Bladder cancer can move quickly and can be very aggressive which is why many of us have found it necessary to have our bladders removed. Please encourage him to take this very seriously and follow up.

        or create an account to reply.