Just diagnosed

[kimt838]

The last 4 days has been a roller coaster for me.  I had a complete hysterectomy wednesday at the age of 33 because of a suspicious lesion on my right ovary.  CA 125 has been elevated since march.  It was 125 in march and 205 in september.  I have lynch syndrome which caused my colon cancer.  I have frequent checkups for that and uterine cancer as I have a high risk of uterine cancer.  The cyst was discovered on my routine annual checkup.  I opted for the full hysterectomy because my risk of uterine cancer is nearly 70% and I knew I would need one anyway someday and I wanted this to be my last surgery.  I've had 2 colon resections in the past 18 months.  The plan was to send the ovary to pathology for a few frozen slides and take nodes and other samples as necessary.  The initial pathology report while I was in surgery showed benign.  They found extensive endometriosis in my abdomen that explained the elevated ca 125 and the other symptoms I'd been having.  Mainly GI related.  The endometriosis had adhered my bladder to my uterus and had wrapped around what was left of my colon and was just everywhere.  Also lots of adhesions from my previous two surgeries and my c section 7 years ago.  The final pathology report showed ovarian cancer.  It was buried deep within the ovary.  The ovary was covered in endometrial tissue.  Apparently they take a few samples to look at during surgery and they didn't get the actual mass, hence the initial benign diagnosis.  They didn't get any nodes.  It wasnt in the uterus or fallopian tubes nor in the peritoneal washings but the cyst had burst.  How bad is it that they didn't get the nodes?  It is saturday and I don't know when I will get in to see the special surgical oncologist about whether or not they will need to go back for the nodes.  I am freaking out to say the least.  What I want to do is just go ahead and schedule surgery to get the nodes next week.  Not having the nodes leaves so much unknown and I am just a disaster.  From what I have seen doing reserach stage 2 involves other female organs and stage 3 involves the nodes.  Is it likely that it could move to the nodes and not be present in the female organs?  The oncologist I saw in the hospital before discharge says it looks like a 1c diagnosis but they cannot be certain without the nodes.  The cyst was open but there were no cells in the peritoneal washes.  It seems the mass was buried very deep.  The ovary was quite enlarged because of the endometrial tissue.  And why the heck didn't anyone notice such extensive endometriosis in my last 2 surgeries?!?  It is saturday and I cannot talk to a doctor before monday.  I'm healing from surgery which leaves me lots of time to search the web and drive myself nuts.  Give me some words of wisdom.

[kimt838]

Thank you for answering me.  After much research and praying, I am going to call my ob tomorrow and ask to be scheduled for the nodes to be taken this week.  I will never rest easy withoIut those nodes.  I want the most accurate diagnosis and staging.  I'd rather do it before healing too much as this surgery wasn't easy and I don't want to fully recover and have to start all over.  My dad did quite a bit of research last night and found this type I have is somewhat rare and often misdiagnosed as benign.  It seems to run with endometriosis and gets buried in edometrial tissue.  He has found lots of cases where the women proceeded to chemo without the nodes but I cannot let that question be unanswered.  I don't want to look down the road 5 years from now and wish we had gone back for the nodes.  Hopefully I can get in this week, I'm sure there are openings in surgery as nobody wants to have surgery the week of thanksgiving.  I don't care, I just cannot rest knowing those nodes will answer alot of questions.

[medmess]

Oh my goodness, that a year you have had.  The reality is depending on how invasive they found, they will have to do a staging surgery... But in my case, they let me heal for two weeks and sent the pathology to two other places - Hopkins and Yale to get second opinions.

Please take care and keep us posted.