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Avatar universal

Staging and DX without Biopsy

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?
8 Responses
242604 tn?1328124825
MEDICAL PROFESSIONAL
Hi There
You have had perfect care. I completely agree with the plan of therapy.

It may be reasonable to remove the enlarged supraclavicular node. You should ask your doctor about that
best wishes
Avatar universal
Thank you for your response and reassurance.  I count myself as fortunate to have "lucked" into a good medical team.  I had only recently moved to the area and had no local doctor.  I called dozens of offices but couldn't get an appointment for at least 6 weeks, and in frustration I turned to my health insurance nurseline.  They got me a quick appointment, and I ended up with a PCP I really like. an oncologist and treatment center in the same office and an automatic referral to an gny/onc for a second opinion, and apparently very good care.

I will talk further to my gnc/onc about the lymph node.
Avatar universal
hi ,

your development during the treatment is really amazing you are doing exceptionally well so do keep the same spirits and fight back with the same, i hope they must have done a biopsy of your Supracavial lymph node because this is what can make you stand either on this side of the court(3rd stage) or the other side(4th).your CA-125 normalization is also a great news.
Avatar universal
Thank you.  I am a little bit down after surgery, but coming back now.  I think I've finally moved out of "denial" and things are all a bit too real to me now.  I much preferred the "actor in a movie" feeling I enjoyed the first few months. I have been so emotional since my surgery.

They did not bioposy my supraclavicular node and that is also what I know pushed me to stage 4.  I asked my oncologist about this today but he didn't have an answer.  I will ask the surgeon next week along with why he didn't remove any lymph nodes at all during my surgery when my original CT scan showed a number of enlarged paraaortic at dx.

I had my post-surgery CA-125 today, and I will wait the weekend for the results of that.  I am anxious to resume my chemotherapy.
Avatar universal
hi PF_PVD,

i don't know  that i should really post any comments here as this is the patient-doctor forum, but i have posted because you are really doing very good as i have never seen such improvements for a stage 4 ovac patient, and ca-125 drooping straight from 2400+ to 74 in just one dose(this is really a very good prognostic factor), i just have one  good news to give to you as o personally know one stage 4 ovca patient whose condition was some what similar to you and he was dx on feb 1998 and is still alive with no recurrences till date . HOPE U ALSO DO WELL AS HER. A.K.Goodman is a fantastic lady to put your any querries , and i was also impressed with her quick responses, KEEP GOOING AND GET WELL SOON:=).THANKS EVERY ONE ON THIS CANCER FORUM.
Avatar universal
Thanks for your thoughts and comments.  I am having some rough days after my #5 carbo/taxol the day before Thanksgiving.  I was hoping to delay the usual nausea so I could eat some more turkey leftovers, but no such luck.  I hope everyone else is still enjoying their leftovers.  I have posted that after my initial CA-125 drop I then went to 42 after surgery (and 3 tx) and then to 47.7 after tx#4. My medical team went a bit quiet on that news, as I believe they were wanting that number closer to normal.  I choose to wait until I see the results after #6 on Dec 13 and my gyn-onc on Dec 18.  As to the neck node, there is some confusion in that my gyn-onc thought it had been biopsied and his surgeon's notes make some allusion to the biopsy which I know never happened.  Huh?
Avatar universal
hi PF_PVD,

can you just mention how was your surgery,was it optimal or sub-optimal ?
what was your status pre-surgery , did you do any ct or pet-ct to know the status of the tumor and the effectiveness of the initial doses of chemotherapy before surgery ?
Avatar universal
My gyn/onc said I had only microscopic disease after surgery.  If you remember, I had interval debulking due to how extensive the tumors were, and I was told the first 3 chemo rounds worked so well he was happy with what he saw when he opened me up.  
I have had only 1 CT scan for diagnostic purposes (well 1 for abd/pelvis and 1 for neck/chest), as they did not do one pre-op.  Surprised me a bit too.  
I'm hoping these last 3 rounds really clean things up, but I'm a bit concerned about the 8 weeks between round 3 and 4 while I had and recovered from surgery.  With grade 3, it just seemed too long.
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