What questions to ask when you are newly diagnosed?

I am writing this in response to a comment to my last post. I think all of us new to a cancer diagnosis struggle with what questions we need to ask the physicians we see. I did a lot of research prior to my first appointment with a specialist as I wanted to be able to ask intelligent questions.

I have some questions to ask listed on my FAQ page, they are as follows:

How many cases of appendix cancer (or peritoneal cancer) have you treated? (I personally wanted a specialist who had treated at least 50-100 cases of my rare cancer)

What treatments do you use?

What are your survival rates?

What are your complications rates?

How aggressive is my particular tumor?

What treatments do you think I will need?

How long do you expect my recovery from treatment to take?

What is the recurrence rate after treatment?

Another good list of questions is posted on this Making Sure Your Surgery is Safe site, published by the US Department of Health and Human Services.

My local very good surgeon, on discovering my cancer, also said that I needed a hemicolectomy ASAP. I personally chose not to have any further surgical procedures done at the time (my appendix had been removed laparoscopically), as I had thought I might need more than just a hemicolectomy, and wanted to have any surgery I needed done all at once. Because my appendix had ruptured, I knew I had seeded my abdomen with cancer cells, and based on my research, I felt I also needed peritoneal chemotherapy. Peritoneal chemotherapy is less effective when you have had previous abdominal surgeries (due to scar tissue and adhesions that form preventing distribution of the peritoneal chemotherapy...scar tissue and adhesions develop in about 5 days after major abdominal surgery).

In the end, I waited 6 weeks to have surgery done by a specialist who had treated many cases of appendix cancer (my surgery was more involved than just a hemicolectomy, I had the hemicolectomy done as part of my cytoreduction surgery). I had peritoneal chemotherapy initiated almost immediately after surgery (before scar tissue and adhesions had formed), and had not other abdominal surgeries aside from the laparoscopic appendectomy prior to my cytoreduction surgery. All of those things I think went in my favor, I have been cancer-free for 9 years.

While we all want the cancer removed from us as soon as we are diagnosed, sometimes it is worth the wait to seek out the correct treatment, to see a specialist. I have many of the specialists listed on my "Physicians and Facilities" page.

Hope that helps!