Initial OC Diagnosis

AmandasStory

I have been complaining of ever worsening pelvic pain/gas/bloating/changes in bowel movements for over 2 years.  Finally had ultrasound done that showed a tumor roughly 8cm on right ovary.  My doctor called and during our 2 minute conversation said "it's gotta come out! do the bloodwork (CA-125), and CT scan I ordered, and we will talk soon".  Instead she is "too busy" to talk to me, and instead emailed me to say: "CA-125 is normal, CT shows only the tumor we knew about.  You can wait 4-6 weeks for me to return from vacation to take it out, or be referred to oncology - your choice."  Her email also said "will need to take ovary as it's too hard to separate from tumor, hopefully we can save most everything else.  Will talk after pathology looks at tumor".  This is literally the only "conversation" I've had so far so I've been left to my own devices to figure out what's going on......

From what I see the fact that I've had so many symptoms is not a good sign, and that CA-125 test is useless for pre-menapausal women (I'm only 35).  The tumor is only 8cm, but I look like I'm 6 months pregnant from the abdominal distention.  

If you have experience with this, when did you find out a diagnosis?  Did the Dr. look at the ultrasound/CT scan etc. and at least give you an idea of what they thought it was?  How many days/weeks did you have to wait after surgery to find out results? 

Im SO uncomfortable, physically and emotionally!!  Just waiting now.....any advise is helpful! 

Thanks!! 

Benita1974

hi Amandasstory, sorry to

hi Amandasstory, sorry to hear that. I have been worry ing the same time recently but my doctor said it can't be sure until surgery to take it out. I am waiting for the surgery this week which is scheduled three weeks after doc confirmed an ovarian cyst which is over six cms and causing me pain. I would try to find someone to perform the surgery asap. 

other people maybe give more knowledgeable answers. any way, wish you the best.

txlady1987

Hi Amandasstory, I am so

Hi Amandasstory, I am so sorry you are going through this. I am much older than you, but had most of the same symptoms. My symptoms were abodminal pain (nothing sharp, but more like an aching or really bad cramps) early satiety (feeling full after eating just a few bites) nausea with a small amount of vomiting, and abdominal distention with pressure - it felt like I was carrying a bowling ball in my stomach. My CA125 was over 1100.I initially went to the ER for abdominal pain. I was diagnosed with diverticulosis and a UTI. I also had ascites (free fluid in the abdomen). I followed up with my primary care doctor who immediately had me get an ultrasound which revealed a mass and ascites. She referred me to a Gynecological Oncologist. She reviewed my records and advised me based on my test results she suspected I had ovarian cancer but she could not give me a definitive diagnosis until she did a biopsy. She scheduled me for a laparoscopy and advised me she would do a biopsy then and might even proceed with a total hysterectomy and oopherectomy and any other organs that were involved. The laparascopy revealed that I had numerous small tumors (my doctor said it looked someone had thrown a cup of rice in my abdomen - there were so many small tumors) she did a biopsy which came back malignant. My diagnosis was Stage IIIC Ovarian Cancer which means the cancer had already spread beyond the ovaries. Since there were so many tumors, I had to have chemo before they could perform the debulking surgery. I had my de-bulking surgery in November 2018 followed by one additional round (3 treatments) of chemo. I had a CT scan after my treatment was completed and was given the all clear. However, now six months later my CA125 is elevated again and I just had a CT scan which revealed a very small nodule on my diaphraghm just under my left lung. I am going to have to have at least 2 more rounds of chemo (6 treatments). My doctor feels this will be curative.

This is just my opinion (and everybody has one) but I would definitely get a second opinion immediately. Consult with a Gynecological Oncologist. They are your best bet if it is cancer. They have the most experience and are better equipped to do this specific kind of surgery/diagnosis. Don't stop seeking answers until you feel confident about what you have been told. 

I hope this is not cancer, but I would not wait to find out. You have to be your own advocate - don't be afraid to ask questions. Praying for a good result for you.

 

Tethys41

Cyst

Hi Amadastory,

I understand your frustration.  It is good your CA-125 is normal, and it is not inaccurate if you are pre-menopausal.  I was pre-menopausal when diagnosed and mine was 4600.  

That being said, if your gynecologist is referring you to a gynecological oncologist, I would go for it.  If this does turn out to be cancer, this is the type of surgeon you want.  They can't really tell you for certain what type of cyst or tumor you have until surgery.  A CT scan would indicate only the size and location.  

I had a 9 cm cyst 10 years before my cancer diagnosis and it turned out to be endometriosis.  There's a good possibility this isn't cancer, but I would not wait around.  

jlampe

txlady1987 said:

Hi Amandasstory, I am so

Hi Amandasstory, I am so sorry you are going through this. I am much older than you, but had most of the same symptoms. My symptoms were abodminal pain (nothing sharp, but more like an aching or really bad cramps) early satiety (feeling full after eating just a few bites) nausea with a small amount of vomiting, and abdominal distention with pressure - it felt like I was carrying a bowling ball in my stomach. My CA125 was over 1100.I initially went to the ER for abdominal pain. I was diagnosed with diverticulosis and a UTI. I also had ascites (free fluid in the abdomen). I followed up with my primary care doctor who immediately had me get an ultrasound which revealed a mass and ascites. She referred me to a Gynecological Oncologist. She reviewed my records and advised me based on my test results she suspected I had ovarian cancer but she could not give me a definitive diagnosis until she did a biopsy. She scheduled me for a laparoscopy and advised me she would do a biopsy then and might even proceed with a total hysterectomy and oopherectomy and any other organs that were involved. The laparascopy revealed that I had numerous small tumors (my doctor said it looked someone had thrown a cup of rice in my abdomen - there were so many small tumors) she did a biopsy which came back malignant. My diagnosis was Stage IIIC Ovarian Cancer which means the cancer had already spread beyond the ovaries. Since there were so many tumors, I had to have chemo before they could perform the debulking surgery. I had my de-bulking surgery in November 2018 followed by one additional round (3 treatments) of chemo. I had a CT scan after my treatment was completed and was given the all clear. However, now six months later my CA125 is elevated again and I just had a CT scan which revealed a very small nodule on my diaphraghm just under my left lung. I am going to have to have at least 2 more rounds of chemo (6 treatments). My doctor feels this will be curative.

This is just my opinion (and everybody has one) but I would definitely get a second opinion immediately. Consult with a Gynecological Oncologist. They are your best bet if it is cancer. They have the most experience and are better equipped to do this specific kind of surgery/diagnosis. Don't stop seeking answers until you feel confident about what you have been told. 

I hope this is not cancer, but I would not wait to find out. You have to be your own advocate - don't be afraid to ask questions. Praying for a good result for you.

 

Gynecological Oncologist.

I agree with the other ladies, the Gynecological Oncologist can look at everything & help you decide what to do, and there isn't any test that can tell them with certainty without surgery.  Everyone I've talked to about Ovarian Cancer has said that it best for you to have surgery (even if only exploratory) done by a Gynecological Oncologist in the case that it does turn out to be cancerous.   Best wishes and hopefully you can get it sorted out, I can't imagine waiting and trying to figure it out on my own.  

 

abrub

My ovarian tumor was of Appendiceal origin

Ask for a CEA - appendix cancer can cause similar symptoms, but is more likely to show up in an elevated CEA which is a common colo-rectal tumor marker.  My CA-125 was normal going into surgery; my gyn expected a benign tumor.  It wasn't.  It was Appendix Cancer.

WarriorS1

Hi Amandasstory - sorry you are going through this

Sorry you are going through all of this. I agree with the recommendations made here to seek a consult with an oncology surgeon. The sooner you can get into a specialist and get the tumor removed and a diagnosis the better. Wishing you the best of luck.

Bea_D

Don't wait!

Make an appointment with a gynocologist/oncologist, sooner than later, they are the experts, and they know what they're looking at.  My symptoms were the same as yours, it got to the point that I didn't know what to eat, how my stomach would react, I too looked 9 months pregnant.   I got sicker and sicker.  I lost 7 months with my GP treating me for leaky gut, IBS, lactose intolerence, I lost weight but just kept getting bigger and bigger.  Maybe if at the 2 month mark he'd sent me for a C-125 I wouldn't have needed the radical hysterectomy to remove my right cancerous ovary, now enveloped within a 9 lb sac of fluid.  Diagnosis, Stage 1c Ovarian Cancer, radical hysterectomy, 6 rounds of chemo, Cancer free since Feb/2017.  What's good for you, your C-125 is normal, mine at diagnosis 47,000 but after surgery and chemo, last week 6.3!  Don't wait, it's better to know than to keep guessing, and it's better taken care of quick, whatever it is.  Best of luck to you.