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Spot on PET scan

frankie402
Posts: 31
Joined: Aug 2013

Hi everyone, I found this site searching Peritoneal cancer.  I am needing advice as to the kind of biopsy to have and if anyone else had this.  I was diagnosed with FNHL in the ileum last year and had a small bowel resection.  They consider it gone after surgery but still watch with CT's and PET scan.  A week ago PET showed a spot on the right side of my lower abdomen.  Radiologist says its a lymph node near the inguinal ligament.  My oncologist says it is very strange and he can't tell where it is, he said it looks like it is in the lining of my abdomen or an ovary.  He sent me to a surgeon and the surgeon said it's not an ovary, he believes it is in the lining of the abdomen and we need to biopsy it. Well I wasn't that bothered until I searched tumor in lining of abdomen.  Ok, not the best thing to read about!  Anyway the surgeon said we could biopsy with the needle but it would leave us still scrating our heads and that pathologist need the whole lymph node to make a diagnosis.  So I decided to do the laparoscopic way and am very nervous.  Everything I read says you need a gynecological oncologis.  There are so many questions in my head like do I need a gynecological oncologist? Is the laparoscopic the best way to biopsy?  If it is cancer is this a hard one to deal with?  Any info on this subject would be great. Thank you for reading!    

seatown's picture
seatown
Posts: 220
Joined: Sep 2012

So sorry to hear about your health problems.  Must say I can't comment on your previous diagnoses--they are not things I've heard about.  But my main advice would be -- DON'T fear that you have peritoneal cancer until you have more information.  Most of the people I've communicated with about their symptoms prior to diagnosis say they had extreme abdominal swelling, to the point of appearing heavily pregnant though they knew they couldn't be.  This abdominal swelling was also present in my case prior to my diagnosis of primary peritoneal cancer just over a year ago.

In my case, they could not make a definitive diagnosis (despite several attempts) from only the abdominal fluid that caused the swelling.  This is just my guess, but that may be why your doctor says a needle biopsy is not the best course of action.

It's also not clear to me if your laparoscopy is for diagnostic purposes only.  If it is not, by all means you should have a gynecologic oncology surgeon.  There was, I believe, a NY Times story a while back saying that patients with gynecologic cancers have a much higher survival rates than patients treated by a general surgeon.  

If you should ultimately be diagnosed with peritoneal cancer, my advice would be to consult this source:

http://www.nccn.org/patients/patient_guidelines/ovarian/index.html

Peritoneal cancer is treated just like ovarian cancer.  In fact, one of my doctors once said I might be better off telling people I have ovarian cancer, since most people have no idea what peritoneal cancer is.  In the NCCN guidelines you will find plenty of references to peritoneal cancer as well.  The Natl Comprehensive Cancer Network sets the highest standards for cancer treatment, & I have found these guidelines to be very useful.

Good luck.  I hope you get only good news!

frankie402
Posts: 31
Joined: Aug 2013

Thank you seatown for responding to my post. I kind of rambled a bit sorry!  I had my biopsy yesterday and will find out the results in a few days.  It was an enlarged lymph node in the lining of the lower right abdomen.  That is why I was jumping to conclusions because when you google that peritoneal cancer is what it gives you.  I am a googler!!  I know it's a bad thing to do but I just can't help myself sometime!  I think the question I was trying to ask was did anyones cancer start in a lymph node in the lining of the abdomen.  So I just need to wait for the results and then I will know exactly what it is.  Thanks again!

 

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