Interviewing for the Scary HIPEC procedure....

I got through the holidays and soaked in every moment with my family not knowing what my future would be.  We started to research our next steps.  So many scary statistics that I needed to just focus on my personal story and not everyone else's.  Actually I would be lying if I told you that I was focused at all, but Eric, he was the one that kept it all together for us.  He compiled a pdf file of all my medical records and then we started looking for doctors that specialize in this rare diagnosis.  These specialists are all over the US and there are no more than 20 total.  It is weird to think today how much time I spent looking at these surgeons photos, and medical resumes to see if they somehow spoke to me......Our first appointment was a referral in Indianapolis.  She was a considered a specialist but I couldn't find much about her history with the disease.  She explained that I was in better shape than most with my stage but that it would be a chronic disease that every 2-3 years I would have to address in one way or another.  She wanted to do a debulking surgery which basically opens me completely up and just removes any disease found and any organs that look like they are affected by the cancer.  She did not want to do any chemo because she thought it would cause more harm.  She was very positive and told me that it is slow growing and my CT scan looked like it has not spread that much.  We liked this surgeon, she definitely knew the disease but I did not know how I felt about no chemo.  The treatment that we thought we needed is listed below:

The "standard of care" for Pseudomyxoma is a combination therapy that consists of a cytroreductive surgery to attempt to remove all the tumors, any organs with signs of cancer and effected tissues. Then a procedure known as HIPEC-heated intrapertioneal chemotherapy, is performed.  The average surgery takes 10 hours long and before the surgeon is done the chemo is heated and poured into your belly.  The temperature is usually around 107 degrees and it circulated through your abdomen for 90 minutes to kill any existing non-visible or microscopic tumor cells.

We decided to get more opinions to see how other specialist would treat me.  The interview process started and Eric sent my records to 2 other surgeons.  Instead of traveling all over the US we did phone consults which aren't the ideal situation.  Even though they are saying this is slow growing, I needed it out of my body and the sooner I found "THE" doctor was better for me.  We spoke to a surgeon in California who was very helpful, but he did think the CHEMO was a must. Why would we just do the big surgery, remove all the cancer and not finish it off with the chemo? He did tell us that he knows there is a specialist closer to us and he thinks being close to a support system is very important.  Even though we already sent our records to a specialist in Nebraska, we wanted to talk to the Doctor that was close to home.  NAPERVILLE, we found the specialist 5 minutes from Nicole's school.  What are the chances of that?  Eric did his medical liason duties and there just happened to be a cancellation that day, so they could get us in.  I can remember walking in and looking for things that I liked or didn't like at his office.  This is a complete interview process, what's his history, how is his bed side manner, what did he think about my previous consults with other surgeons and most of all did I get that feeling that he was the one.  He explained everything to us, the surgery, the recovery, the complications and the follow up.  Then I asked the dreaded question that was on my mind from the beginning, "How long was I going to live", he looked at me and said if I was his wife or daughter he would make them do this procedure and I had a good chance of living a long life.  SOLD, not only did we really like him, we also felt very comfortable with him and I think after all the interviewing we had done, he was my one.  

NEVER did I think of the steps involved in finding someone to try to save your life, or having the choice to find the right doctor to trust. Many people don't get that same opportunity and I am grateful every day that we were able to HIRE the surgeon that would take very good care of me :)