Anyone out there with experience in ovarian cancer? - Cancer: Cervical & Ovarian Message Board

4isenuf · 06-10-2001, 10:43 AM

I was just wondering what someone feels with ovarian cancer, before and after diagnosis. I have seen the list of symptoms but they say "pelvic pain"- is this sharp pain?, dull pain?,etc... they say "menstrual irregularities"- are they talking no periods?, heavy periods?, short or long periods?,etc... they say "constipation or diarrhea"- which is more common? They say nausea, indegestion, gas,- are these symptoms before any noticeable swelling of the abdomon? I was told by one doc that by the time a person has symptoms that the disease is progressed and the person is really sick... but then I have heard about people having these symptoms for a year before being diagnosed. I am very confused and worried. I would think by the time swelling has occured that one would feel a growth. I have been diagnosed with IBS, and have heard horror stories about people diagnosed with IBS then later finding out they have ovarian cancer. My symptoms are right sided pain, sometimes just an ache then sometimes pretty uncomfortable, constipation, back ache, sometimes gas. I have had two ovarian ultrasounds in the last two years. I have also had two rectal exams in the last two years. This has been going on for the last two years. My doc has diagnosed me with endometriosis. She felt a "lesion" on the back right side of my uterus. I have an ultrasound on June 13. One more thing, my symptoms come and go. Wouldn't they be consistent with ovarian cancer? Any info. would be appreciated!

4isenuf · 06-12-2001, 10:23 AM

Isn't there anyone out there who can put my mind to rest, or at least answer some of my ??'s??

NIE · 06-14-2001, 01:42 PM

Dear 4ISENEF,
I may be able to help you. My mother has ovarian cancer and I have followed her diagnosis and treatment closely. First of all, unfortunately, the symptoms of ovarian cancer are similar to IBS and many other abdominal problems. If you have a higher risk for ovarian cancer such as family history, infertility, no children after age 35, then you should discuss some pre-diagnostic testing with your OB/GYN. First thing I would recommend is a transvaginal ultrasound, then a blood test called CA125. The blood test if above 35 is an indicator that something may be going on.
If you still are not satisfied you could ask for an abdominal CAT scan.

Do you have any other questions. Please write back. Also visit the national ovarian cancer coalition and the OvCa.net web sits for more information. There are message boards on both sites that are very helpful.

Best Wishes,
Natalie

KristiLabis · 08-09-2001, 08:02 AM

Hello,
I think that I might be able to help you. I'm 38 and an Ovarian Cancer survivor. I found out that I had Ovarian Cancer at the age of 32.
At the age of 31 I started to have some cramping in my left side and thought that it was irritable bowel or GI related and saw a GI doctor for a colonoscopy, sigmoidoscopy, and also saw a Urologist for a cystoscopy! The tests were all negative but I was still having pain and wanted more answers. I was also having heavy menstrual bleeding, and felt a little bloated. I went to THREE OB-GYN's before having surgery. The first OB-GYN said that he could do a D&C for the heavy bleeding, and didn't recommend that I get a CA-125 blood test. I recently had read an article written by Kathy Ireland whose mother died of ovarian cancer and she said that all women should get that test so I was pushing for it. The doctor said that the test was not accurate. Disgusted with the OB-GYN's attitude and unwillingness to get me that test I saw Doctor #2 who ordered the test for me. It came up as above slightly above normal. Then he sent me for a transvaginal ultrasound. The findings were that I had a mixed solid and cystic mass on my left ovary. He told me that we could wait 6 months and see how things go and see if it shrinks or goes away. I was VERY nervous and sought out a second opinion. I then went to see Doctor #3 who is my mothers OB-GYN and delivered me and my twin when I was 3 months premature at 1 pound 8 ounces. I consider him an expert in his field, and he has saved my life twice (once at birth, and with cancer). He is really old and has seen everything, I think! To make a long story short he set me up for an exploratory laparascopy right away. During the lap procedure while I was still on the operating room table my tumors were sent to pathology for a preliminary diagnosis. It was discovered that I had Endometriosis and stage 1, grade 1 OVARIAN CANCER in my left ovary, my uterus was borderline, and the cancer was spreading to my right ovary. He did washings of my peritoneal cavity and said that he didn't see evidence of that the cancer had spread to other organs. He did a complete hysterectomy with removal of my uterus and both ovaries.
When I woke up from the surgery I was shocked that I had a hysterectomy!!!!!! I remember signing consent forms to allow that but never did I think that it would happen to me!!!!!!! I thought that my life was going to be over after I heard that I was told that I had cancer. I think that the key to surviving this is getting it caught EARLY!! For the next 5 years I saw a GYN-ONC at MD Anderson Cancer Center and was put on Megace which is like a hormone but isn't which treats cancer. I had the choice of going on Chemo but my doctor really didn't think I needed it. Going to MD Anderson for visits was very emotionally upsetting being around other cancer patients and being one myself. What really bothers me is that I don't have any family history of it. I have a twin sister who is worried that she will get it. She goes to the OB-GYN every 6 months for a pap, CA-125, and ultrasound. My younger sister who is 27 just had an abnormal pap and I'm now worried for her.
I think that all women should get the CA-125 blood test and pap smear every 6 months to a year. The test is very important! Your doctor will tell you that it isn't accurate and shouldn't be used as a diagnostic tool in women who haven't already had cancer. Find yourself a doctor who will listen to you, and who will give you the CA-125, and pay for it out of your pocket if insurance won't.
Sorry this was so long. I hope that I helped you and please let me know if you have any questions.
Sincerely,
Kristi