Settling in

I figure I'll be a little more thorough in describing what our appointment on the 27th sounded like since my previous post was written on my iphone and was very brief.  My Mom, Dad, Sean and I attended my post Op. appointment with Dr. Hodul.  (I've got such great parents, still going wtih me to Dr.'s appointments even when I'm 31 years old.... :) After waiting for about an hour, Dr. Hodul came in.  I was SO nervous.  I feared that because they took 46 lymph nodes and because I had the tumor in me for YEARS there was a chance that something would show up in a few of those lymph nodes.  Dr. H was very calm. She had the pathology papers in hand.  She first asked me how I was doing. She took a quick look at my incision, told me if the steri strips didn't fall off within the next week, I'd have to take them off myself (cringe).  The pathology report was SO confusing.  There were multiple sections, adendums and many words I did not understand.  I must have said, "what does that mean" every other word out of her mouth.  So, my paraphrasing summery is......  they took 46 lymph nodes total (a few different groups, but all add up to 46) No disease present in ANY of the lymph nodes.  At that point I really needed a few moments to regroup, the weight lifted off of my shoulders was overwhelming.  Then she explained that the portion of the colon removed was removed in two segments and there was no disease present in either segmant.  Hooray!  (she is also pretty much only talking about the carcinoid tumor) She reconfirmed that she went through my entire bowel and did not feel any carcinoid tumor anywhere. She told us she'd be shocked if it ever came back and that I would be monitored very closely to make sure if it did, we'd catch it early.  Now the confusing part.  The other tumor that was in my appendix is the low grade mucinous neoplasm.  These tumors secrete mucous also called mucin.  The tumor was removed with my appendix on 11/13/12 but there was mucin on the outside of my appendix which makes it pretty certain that there is mucin in my belly.  They sent teeny tiny pieces of what they were testing for mucin into pathology along with a few other things that I didn't understand what they were (some kind of calcified, tiny nodules) So, technically there was mucin.  They had to test it with a staining method and even their words sounded like they were assuming it was mucin; it was so small it was hard to tell.  Also, mucin typically has cancerous (aggressive) cells in it.  The mucin they found had no aggressive cells and no epithileal cells in it.  (very good thing).  There is a major surgery called HIPEC that is used to treat mucinous cancer.  We all wanted to know if I was a candidate for it.  Dr. H was very adamant that I am not. She explained that the goal of that surgery is to get the mucin to 1 cm pieces and then begin the heated chemo.  The mucin in my belly was 1 mm or less.  HIPEC is also a very difficult surgery with lots of morbidity (not mortality) and isn't worth the many risks that come with it at this time. Of course our natural desire is to get ride of it but there isn't any treatment.  Mucinous cancers are extremely rare (like 1 in 1,000,000) and the research isn't there.  I will have to be monitored VERY closely.  The difficult part of that is that CAT scans only pick up 1 inch tumors (at the smallest).  Dr. H said this cancer grows slowly and mine may never grow or change.   Sean and I have felt very comfortable with Dr. Hodul and Dr. S at moffitt. Both are carcinod specialist.  However, with the wait and watch approach for the mucinous cancer we feel that we should get a second opinion with a DR. that is a mucinous specialist.  There are actually a lot to choose from.  Right now we are leaning towards a Dr at WFU in North Carolina, 2 Dr.'s at MD Anderson, a Dr. in Washington DC and a Dr. in Pittsburg.  We are taking January off as a "let our brains catch up to what has happened" month and in Feb. we will meet with 1 of these Dr.s hopefully in Feb.

The good news is settling in.  It is still hard for me to swallow that having 1 of the 2 different cancers considered gone and the other considered low grade and watch closely is the best news.  I don't mean to sound ungrateful, because I am beyond thankful for the miraculous news we've been given.  I guess it is just going to take some time to get used to living and thriving with cancer.   I am very optimistic that my Dr. is correct and that the cells may never change.  I also am taking any precaution I can to help my body be strong and ready to fight any cancer cell that try to grow.  I'm not quite ready to begin my super green diet (due to the surgery and condition of my healing colon (sorry if that's TMI)) but I'm taking many good supplements, I'm set to begin a series of mediation classes, I am seeing a therapist to help me deal with this life altering ordeal, I'm going back to my acupuncturist and as soon as I can- I'll be in a serious exercise program.  (I'm thinking a mix between running, weights and yoga.)

I've also joined a few support groups.  There's a FL carcinoid group and 2 different PMP (that's the mucinous type) groups. One is in the US and one is in the UK.  With all three I can speak to other survivors and I also have access to the people who have "been there done that".  

That's it for now.  Have a wonderful and safe New Years and lets all cheers to a HEALTHY and AMAZING 2013!!