Ovarian cancer is one of the hardest to diagnose. I had all the symptoms for 4 years. My oncologist says on average it takes two years and several specialists before it is found. The oncologist works with it every day. Because less than 2% of women get it the Gynecologist has little experience with it. The only real time it is easy to palpate is when a woman is asleep for surgery. Pap smears and endometrial biopsies do not find ovarian cancer. Also the way to feel it is a hand up the butt which most women would not like so doctors do not do it. If you have a pap smear and a doctor does not do a rectal it is missed. Early stages it is hard to feel.
My first cat scan and ultrasound did not show the cancer even though I was throwing up everyday. It took two more years. I threw up because my bowels were blocked and had bad diaphragm spasms. I was in a study and they did mammograms, pap smear, and endometrial biopsies so I thought I was covered for cancer.
I even ended up in the ER because of non stop vomiting. The doctor wanted to admit me for tests but her superiors would not let her. I went another six months. I saw a GI guy. He would not do tests. He said he was sure it was IBS. I went to a heart specialist for the diaphragm spasms because I thought I was having a heart attack. My heart was fine. I was sent to a pain clinic.
I finally went to the GP and said there is something terribly wrong. She did lots of tests. This was a Friday. Monday they called to say I had a mass and needed to see an oncologist. Tuesday I saw the oncologist and on Monday I was in surgery. I had cancer in eight places. They cut me down the middle. They said I might wake up with out a bladder or with a colostomy. They cut me down the middle. They took all my female organs and the omentum the lining of the organs.
When I woke up they said I was stage 3c. Because mine is so aggressive I have had 23 rounds of chemotherapy. They then put a port in my heart for chemotherapy.
If they are not taking the omentum and doing laproscopic surgery it is early stage. Size of tumor does not matter. Some women have benign tumors the size of grapefruits. Also if your CA 125 is not elevated it is probably early stages.Mine was 300. I would applaud your doctors if they found it in the early stages. Most women are like me and they find it late. They could tell from the ultrasound it was bad that is why I was in surgery so fast.
Check out the facilities and do not be afraid to get a second opinion. I wish I had. All doctors and hospitals are not equal in treating ovarian cancer. You need the best you can get. My first hospital was a University hospital, highly rated. My doctor was nationally famous for promoting early detection of ovarian cancer with his rock band.. Chemo was given in a dirty, crowded, hallway. It looked third world.It was unhygenic and you had no privacy. The only cancer they did not treat at the new cancer hospital at this University was ovarian. When I saw the hallway I was shocked I hated it from the get go. I got the rock star when he was busy with his band on tour.He was gone the day after my surgery for three months and I was not given other doctors. I only saw nurses and med students. I saw him the Tuesday before surgery and never again. I was scared and needed a doctor plus I was so sick. Not even the day of surgery did I see him. If I had stayed I would have been dead in three months.They hospitalized me immediately at the new hospital because my heart and kidneys were failing. I went to Duke which is a high rated cancer hospital. It is two and a half years out for me. I have been in clinical trails for the latest treatments. Also Duke is cheaper.
I am happy and have a good life.I am planning a big trip this year. I would not know I have cancer except for the treatment. I hike and ride horses.
yikes what a story! tx for the explanation about missing the tumor. she did a rectal exam but i believe just to get a smear and did not feel around up higher. the excruciating pain a month ago got me to a walk in and was treated for diverticulitis but pain returned and ER did cat scan showing multiple large "cysts" they advised ultra sound so obgyn sent me to surgical oncologist and she said after exam and reading labs that it looks like ovarian ca and scheduled me for colonoscopy next week followed by total hysterectomy the next day saying i might also have to have temporary colostomy and port but won't know til i am under. quite shocking news but guess they gotta tell it all since they can't wake u and consult. after having breast ca mastectomy chemo hep c with ribavirin and interferon i am getting sick of this survivor stuff but guess it beats the cremation. i have a great support altho single and appreciate your very good warnings and information. i hope your have a great trip and a long life, best, babs
You have been through a lot. When people say God never puts more on your plate than you can handle I say but I do not recall getting in the all you can eat buffet line.
I have had Multiple Sclerosis since I was 2. I was miss diagnosed until I was 44. I am BRCA 1 positive which causes ovarian cancer and gives me a 90% of breast cancer. They wanted me to do a double mastectomy. I declined which made my Gyn/oncologist mad. My breast doctor said as long as I am in chemo then I do not need to worry about my breast. Hep C is tough. My sister had it but she refused to stop drinking and take care of herself.
May be like me you won't need a colostomy. They took part of my rectum. It makes harder to go.
With the rectal they have to palpate from the rectum. It is not my favorite exam. It does not hurt it is just kinda personal. I had one oncologist who only talked to me when he was examing me. I called him speed dater. I switched to a woman doctor.
If you have other questions I am here.
Support is the key. I have at least 50 friends who have helped out. I help my friends when they need me.
hi and tx again. another question. next week the day before surgery i have a colonoscopy scheduled. i plan to stay on liquids for 2-3 days to be sure EVERYthing is clean. i am still nervous altho i have had this test 10 years ago. stools have been hard to keep moving and have had to remove manually often or use suppositories. maybe this was a clue i missed that something was wrong. just figured it was age and calcium and dehydration as i forget to drink water. do u have any tips for the colonoscopy. i also don't like the idea of waking up (the next day) and have body parts missing like part of intestine rectum or god knows what. at least i knew the breast was leaving before they put me under!!!! yikes u 2 have had lots to deal. must mean we are wise and strong?!!! tx again, babs
I had a similar experience in that a 9.5cm ovarian cyst was discovered just 2 months after my annual well woman gyn appointment. My gyn was talking possible ovarian cancer but it did not end up being cancer (most complex ovarian cysts are not cancerous). But, unfortunately, he removed all my organs anyway. He should have removed just the cyst and then sewed me back up after the frozen section came back benign.
Did your oncologist explain why she thinks these are cancerous? I had read that ovarian cancer usually does not present on both ovaries at the same time.
she said one tumor she felt was not movable which i think means solid when she did a pelvic exam thru rectum. i am not sure what ultra sound showed and i do know cat scan showed multiple large cysts some suggesting hemmoragic. maybe my age 68, no kids, former breast ca led her to that. wouldn't it be great if she was wrong!!!!
Hemorrhagic cysts are not malignant. The traits detailed on the CT scan (ultrasound is not as detailed) are what they look at to determine malignancy potential. Post-menopausal women can develop benign cysts. So you could still fall into the over 98% of women who never get ovarian cancer especially if you do not have a family history of it. I hope that is the case!
I wish I had known more before I went into the operating room.
to u and HVAC i appreciate your being so forthcoming and i am a bit encouraged but will not know til after monday colonoscopy and tues hysterectomy. if i do not have to have chemo again i promise i will drive every ca patient i can find to chemo for the rest of my life. if i do have to have chemo i will shave my head as before and get some cool scarfs a wig and some good books and music. maybe a bigger bath tub and tv and wait it out, with my great support system and pray that i can buy a bit more time to grow.
I did shave my head which was better. My husband shaved his at the same time. I bought all these cool bandana some from REI and a friend went to Africa and brought back great material. I never wore a wig. I also got a head gear banadana which you did not have to tie so I could throw it on at the last minute.
You have aright to be scared. Just remember pain is necessary misery is optional. Keep me posted.