Am I Doing This Right?

Hi.  Quick history.  I am 35 with 3 children ages 5, 3, and 1 (yep, got my hands full).  I have a history of endometriosis, and had a hysterectomy last November.  My Gyn and I agreed to keep the ovaries and cervix.  I hadn't had symptoms of endo since between my second pregnancy and about a month before the hysterectomy.

Starting last April, I began having chronic diarrhea, which I attributed to IBS, although I've never had that before.  Then I had a complete lack of appetite with a 15-20 lb weight loss in 2 months (I had started at 136 lbs.)  I actually got scared about this because I thought it must be some kind of cancer.  In may, I started to have severe pleuritic chest pain, and had noticed a "lump" underneath my ribs on the left side.  A CT of the chest and abdoment was ordered.  The radiologist read the chest CT as bilateral lower lobe pneumonia (which all of my doctors agreed would be very unusual in a person my age), and the abd CT was read as normal.  The weight loss was widely blown off after being tested for the regular stuff like Valley Fever, thyroid problems, yada yada yada.  I felt pretty decent throughout the summer, except for the lack of appetite and diarrhea.  Then around the beginning of November, I started to notice pelvic pressure (it feels like there's a baby in there) and bloating (thought I was just getting fat).  I also started to experience painful intercourse (which was the hallmark of my endo), and worsening lower back pain.  Now the symptoms seem to be getting exponetially worse.  I have gained 10 lbs. in the past 4 weeks, I started having left lower pelvic pain (and to me if feels like there's a lump in there) which occassionaly refers to my left shoulder, terrible night sweats, joint pain and vertigo.

So I went to my Gyn yesterday, and came right out and told him I wanted him to take out my ovaries today, but I would settle for Saturday.  He kind of laughed a little, but not a condescending laugh, and said let's find out why first.  So I gave him my laundry list of symptoms, and he said that there is no way he could do surgery in the next two days, because the insurance wouldn't cover it.  He did however say that he agreed it would be a good idea to take them out and ordered a pelvic ultrasound for Saturday to see what was going on in there (he felt "fullness" in the left side during my pelvic).  I go back to him next Wednesday to discuss surgery.  He has reassured my that regardless of the US findings, he will agree to do the surgery.

So, I didn't ask for the CD-125 because it seems that it may be an unreliable test in early or later disease.  But is there anything else I should be doing to advocate for myself?  I don't care about getting the ovaries out...I'm not really using them anymore anyways.  When I go back to see him, what can I do to make sure this is done as quickly as possible?  I think we are on the same page...he said he "hopes" it's just endo.

Thanks for any input. 

Dear Notscaredyet,

As a Stage 3 Ovarian cancer survivor - since 9-03 with recurrance now in lungs, liver and abdomen - I cannot stress enough your need to see a Gyn-Oncology-Surgeon for your surgery.  The studies have shown that your chances of overall longer-term survival increase significantly with this type of surgeon.  I would have the CA-125 done now as a baseline testing to be used in the future should this (hopefully not be) turn out to be Ovarian cancer. 

My CA-125 was only at 151 when I was diagnoised in 03 with masses of abdominal tumors totalling nearly 11x16 cm.  A CT or PET scan now would show if you have tumors and/or ascites (fluid buildup which is common in Ovarian cancer), 

Should this turn out to be Ovarian Cancer - by having a gynecological oncology surgeon perform the operation, they will be prepared to also set you up for IP chemo which is becoming the new standard treatment after surgery to help prevent recurrance.  This means they would implant a tube in your abdomen for the Chemo drugs to be infused.  You would also recieve IV chemo on alternate weeks.  Standard treatment is often carboplatin and taxol with cisplatin in the IP.  But there are other variations depending on where you're at and who is your Oncologist.

The best thing is that you are getting all the information in advance so you can be your own advocate through out all that is ahead.  Good for you!  I hope it all turns out to be nothing serious, you have a big responsibility with those little ones to care for.  Please feel free to write me off this board if you need any other information.  I also can recommend the ACOR group of online ladies - there is a discussion board for each type of cancer and you can have it emailed daily to your computer...full of wonderful educated and caring women going through this disease in all stages. 

Sincerely and best wishes, Joan Marie

Hi again, I forgot to give you the web address for ACOR  which is:

LISTSERV@LISTSERV.ACOR.ORG

You pick the ovarian list and sign up with your email address and set a password.  Also although my CA-125 was at 151 when diagnoised, it came down to less than 2 for the past 2 years, went as high as 4 then dropped to 3 and all the while I have had these tumors in both lungs and the liver.  So it is NOT a reliable test for me. 

Joan Marie

Joan Marie,

Thanks for your response.  I have read a lot about the need to have a gyn oncologist perform the initial surgery.  However, I think that requesting that could delay the diagnosis process.  I have so much faith in my gyn.  He is a very talented surgeon, and well renound in my area for his "least invasive" techniques.  I will look into whether or not there is a gyn oncologist on staff at the hospital where I would have my surgery, and request that if he should encounter anything that is suspicious for ovarian ca, that he get assistance.  I just don't want to put this off for an extra week or two;  I have a feeling I've let it go too far already.  If my gyn get's in there, at least things could move along more expeditiously.  I will ask about the CA125 at my next visit with him.  I'm really hoping for a 'just endo' dx.

Thanks for the input,

Kristin

On 12/29/2006 Notscaredyet wrote:

Joan Marie,

Thanks for your response.  I have read a lot about the need to have a gyn oncologist perform the initial surgery.  However, I think that requesting that could delay the diagnosis process.  I have so much faith in my gyn.  He is a very talented surgeon, and well renound in my area for his "least invasive" techniques.  I will look into whether or not there is a gyn oncologist on staff at the hospital where I would have my surgery, and request that if he should encounter anything that is suspicious for ovarian ca, that he get assistance.  I just don't want to put this off for an extra week or two;  I have a feeling I've let it go too far already.  If my gyn get's in there, at least things could move along more expeditiously.  I will ask about the CA125 at my next visit with him.  I'm really hoping for a 'just endo' dx.

Thanks for the input,

Kristin

Hello Kristin,

It has been a month since you last wrote.  I have been wondering how you are doing and if you had your surgery.  Please feel free to write if you are up to it.  Wishing you well.  Joan Marie