Neuroendocrine carcinoma

Unlike you , I do know where my NET originated from, but my circumstances may give you some support.  I was originally diagnosed with stage IV cholangiocarcinoma in June 2010, and rediagnosed with Stage IV PNET in January 2013.  During an attempted resection for the CC in my liver (performed in May 2012), lymphnode metastasis was discovered with NET.  My oncologists decided to proceed as if I had two rare forms of cancer, and put me through nine rounds of FOLFIRINOX from August through December 2012.  My sister insisted that I have an Octreoscan in October 2012, which showed that all of my tumors had the octrotide receptors.  The PNET was confirmed by Dr. Edward Wolin with Cedars Sinai in Los Angeles.  Has Dr. Shah suggested an Octroscan for you, or have you already had one done?  I have two tumor markers that my oncologists monitor: CA 19-9 for the pancreatic lesion as that is the site of origin, and Chromogranin A for the NET.  I'm currently receiving Sandostatin LAR, and will begin Everolimus at the end of this month.  I know there are different forms of NET that require different treatments.  Mine is based on the fact that I have well-differentiated, slow growing tumors.  If your doctor hasn't already directed you to this website, carcinoid.org has some good info.  I looked up your doctor, and she is listed on the site as being a specialist in neuroendocrine carcinoma, which is what you need for this rare cancer. 

I hope this helps.  Keep your chin up!  I'm 51 and have two boys (12 and a soon-to-be 15 year old), and refuse to give up as I want to be around when they have children of their own. 

Andrea

Clbt102 said:

Hi! Thanks for responding. I

Hi! Thanks for responding. I am sorry it has taken me so long to reply.. I have not had a ostroscan as of yet. I am flying to MD Anderson for the week of August 26 for a second opinion. I am seeing dr. James Yao. I've had ct scans and pet scans with no other cancer seen other than what is in the one lymph node in my armpit. I am hoping that dr. Yao will do the ostroscan or the new gallium 68 scan. how do you handle the fear and anxiety of what may happen to you? I am a very strong person, am a believer in God and am pretty positive. But I have a current of anxiety that runs through me. I am a psychologist and know that I have mild generalized anxiety disorder and have been on SSRIs for a long time. I quit taking the lexapro when dx'ed. I am thinking of going back on them but am worried about the effects of increased serotonin on cancer/tumor cells. Does the disbelieve and shock ever go away?

 

I too refuse to give up!! Good luck to you!

 

carrie

I have to admit that not every day is easy, but most days are really good!  I keep myself occupied with my two sons' activites, take care of our pets, hang out with my OAO (One and Only, at my age "boyfriend" sounds a bit silly), basically I live my life as if I don't have cancer but treat my body like it does.  You may want to consult with Dr. Shah about the Lexapro.  One of the specific questions I'm asked during my monthly visits with my oncologist is "Are you feeling any anxiety or are you feeling depressed?".  She made it clear that should I feel overwhelmed by either of those feelings that she could prescribe something to help.  Suffering from anxiety and/or depression after a cancer diagnosis is quite common, so if the Lexapro helps you stay positive then you may want to rethink your decision to stop taking it.  The disbelief and shock don't completely go away, and some days I have an absolute melt down (always when I'm alone and never in front of my children).  Afterwards I feel so much better and am able to carry on.  As time progressed, the meltdowns became less frequent, in fact I can't remember the last time I had one. You are in good hands with Dr.s Shah and Yao.  They are both specialists with neuroendorine carcinoma.  It must be so daunting to not know the origin of the growth in your lymph node.  You may find some comfort once you have a clearer diagnosis and a treatment path.  Remember that even if both specialists concur, always ask questions and be your own advocate.  I thank God for my sister, who took the reigns and did tons of research.  Without her I probably wouldn't be around today.  She's the one who suggested TACE to my first oncologist (I had to switch mid-stream, it's a long story), of which I've had four performed at USC-Norris in Los Angeles (I love my specialist there, Dr. Daniels), and suggested the octreoscan to my present oncologist when NET was discovered in my lymph nodes after an attempted liver resection.  She also found Dr. Wolin with Cedar Sinai, who now serves as my PNET specialist.  Im currently taking Afinitor 10mg, and get monthly injections of Sandostatin LAR and Xgeva (for bone issues caused by the bone metastasis).  These treatments are based on my PNET being a well-differentiated, moderately growing cancer.

I wish you the best, and hope that your consultation with Dr. Yao gives you insight and relief (ya, I know, sounds strange when it comes to cancer, but not knowing is worse!).  If you would like to reach me, please send a private message through this website (I get an email prompt that someone is trying to contact me).  I'll be sending positive thoughts your way, and you will be in my prayers.  Please let me know if there's any support I can give you! 

Andrea