@jeanadair123- Thank you for this question, "How are we supposed to know these things?" I think that we have learned a lot from COVID- and that is to do our own research about our own diseases. But I think that we need to speak up to our doctors.

Within the past couple of years, I found out that the nodules that come and go in my lungs are considered cancer, not just the ones that were removed. I had no idea. I had trusted them to tell me everything. I was extremely upset and let my surgeon and my pulmonologist that they needed to assume that I knew nothing and let me know what was going on. I actually was crying, feeling very betrayed. But from now on, because you asked this question and mentioned your husband's problem, I'm going to ask, "what do you see next, what are you watching for, what might come up?" I read every report and look up every word in every report including CT scans, blood work, etc.

I don't think that we can any longer rely on our doctors to fill us in on everything so we have to take over as much control as possible, short of using a scalpel!

Perhaps you can say to your doctor and your husband's doctor that you would like to be informed of all appointments, all things that he is watching, etc. let him know that you weren't happy with being kept in the dark.

Does this make sense?

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