Diagnosis and st

First, I must apologize for cross-posting which I'm sure is a big no-no.  I'm new here and didn't realize there was a patient-to-patient and a different patient-to-doctor forum.  Here is my post where I wanted it to be.  Thanks for your understanding.

I promise there are a couple of questions at the end of this.

I am 54 years old and was dx stage IV metastatic OVCA with peritoneal carcinomatosis and lymph node involvement two months ago (July 2007) without surgery or a biopsy. My initial dx was made after a pelvic exam, mammograms (mom & sis have breast cancer), ultrasound of the abdomen, and CT scans of the pelvis, abdomen, chest and neck.  An enlarged lymph node at my collarbone is what drove me to the doctor, and I also had ascites.  Testing found cancerous cells in the ascites fluid and uterus and my CA 125 was 2,400+.

Due to the presence of tumors “throughout my peritoneum” I was deemed inoperable and before I knew what hit me I was having 3 rounds of taxotere/carbo.  My Gyn/Onc wanted to shrink my tumors as much as possible BEFORE surgery.  The first round of chemo dried up my ascites, my enlarged lymph node disappeared, and my CA 125 went down to 74 (after 2 rounds).  My onc and my gyn/onc were very pleased.  I just had debulking surgery on September 24, 2007, with a total hysterectomy, omenectomy, and salpingectomy.  The brief conversation I’ve had with the surgeon confirmed cancer in the pelvic washings and organs.  They did not remove any lymph nodes.  In a couple of weeks I will start 3 more rounds of chemo.

Question 1:  Was I a total idiot to buy the dx without a biopsy and start chemo based on an educated guess?  I knew nothing about OVCA and staging, etc. and really didn’t educate myself until well into chemo.  I confess I was a total ostrich for a while and didn’t want to know.  Believe me, I’m making up for lost time now.

Question 2:  Does anyone think it strange that there was no biopsy on my supraclavicular lymph node?  This, after all was what jumped me from stage III to IV?

[westgal]

Sorry to hear about your dx. If "testing found cancerous cells in the ascites fluid and uterus" then in my opinion the handwriting was on the wall and you were wise to listen to your gyn onc and start with the chemotherapy to shrink as much of the cancer before surgery. Ask your onc why no biopsy was done on the lymph node. Sounds like things are going well so far and hope this continues.

Best,
Westgal

[rmarie]

Totally agree with westgal, you had all the necessary diagnostic testing necessary.  The only other reason you would have ascites would be a liver disorder, and you didn't have that.  Hey I know the totally ostrich feeling, you go to automatic pilot, to protect your mind from separating from your body, and do what you have to do, to survive.  I didn't know anything about staging after my surgery and tried to get mine decreased to a 3b cause it sounded better.  The debulking should have included multiple biopsies, that would have included lymph nodes, so ask your Gyn/Onc about it.  I have copies of both my path reports.  For me, I would care about the lymph node in the neck, it went away with chemo, so it more than likely was metastic ca.  Ask your Dr. why it wasn't biopsied, I bet they were more interested in starting chemo and decreasing the tumor.  It is terrific that you responded well to the chemo and your CA came down so well.  The next 3 rounds will be over before you know it, and then believe it or not, you will miss them, for a very short period of time.  From my research on OC, and believe me, once I got my brain back, I did research, and still do, everything I can on treatment and chemotherapy.  Good luck to you, we are here for you.  And you can cross post, there is no law against it.

[Conquerer]

please beg them to do IP chem and not just Iv   All the big centers and progessive doctors are doing IP  at the stage you are you need IP chemo rven if it means going somewhere else.  IP is standard for may doctors.

god bless

[PF_PVD]

Thanks for your quick responses and well wishes.  I am very glad to have found this site after I pulled my head out of the sand.  I was told no lymph nodes were removed at all, as none were enlarged.  I have requested a copy of my hospital stay records including pathology reports and surgeon's notes, and I already have a long list of questions for my surgical follow-up with my gyn/onc.  The debulking did include multiple biopsies, but my surgeon said he did not remove any lymph nodes as none were enlarged.(?)

As to IP chem...I may be caught in the middle of something.  My oncologist has his own treatment center where I get my chemo, but they don't do IP chemo.  My gyn/onc who did my surgery is associated with a hospital where they do IP chemo, but my onc has no privileges there.  During my 8-day hospital stay, my onc was not able to visit me.  I can see this being a problem down the road.

[SimplyStar]

Have you ever heard of a doctor asking for Visiting Practice Privledges, I do know that some hospitals recognize this.  It might just work for you so that you can get the IP chemo.  Good Luck

[rmarie]

Interesting how they work it, my Gyn/Onc does my chemo at his office, they don't send us to a separate oncologist.  will be thinking of you, keep me posted how it goes.  

[msjazz]

to have i p chemo there can only be microscopic cells left after surgery. ask your onc what the size is., or ask dr. goodman. that may be a factor. i did 4 rounds ip and had to switch to ip. i was sick up to 10 days after the cisplatin. however after 1st trip to e.r. i asked if dr. would have home health come the day after chemo for iv saline and iv nausea meds. that helped keep me out or e.r.  .anyone who is that sick after chemo should see if they can get that to avoid e.r. and dehydration.