New - Trying To Get Diagnosis

[aesDX01]

Hi, About 2 weeks ago I had medium vaginal bleeding for 2 days. I am 63 and 10 years postmenopausal. My new OB did transvaginal ultrasound after I insisted (I have had every symptom of ovarian cancer past 6 mo), I had an endrometrial lining at 12 mm and a cervical polyp biopsied came back benign which was awesome. They did find an multilocular complex cyst 3-4 cm on rt ovary surrounded by 6 1 cm cysts. Although I continued to have abdominal and back pain daily they advised waiting 2 mo and rechecking cyst again. They refused to refer me for a second opinion. MyCA125 was 14 but I know it does not elevate past 35 in 50% of early ovarian survivors and never in 20% of late stage survivors. I tried to get a local gyn oncologist to continue assessment and treatment but he refused I think because the ob/gyn refused referral. I did also yesterday get a clear CT scan which I got because of very severe pain on left abdomen after sex. What I want is to get my ovaries taken out and to have them biopsied. The reason I am still so worried is that I have all the symptoms particularly the bloating past 2 mo waist tighter but inexplicably losing 10 lb in one week with no diet/exercise changes, severely increasing nausea over past month with vomiting, and fullness after eating past 2 weeks so that I am unable to eat 3 normal sized meals daily. Many days now I have eaten only 1 meal and at 236 lbs. this is not a problem I've ever had before.

This am I ate 1/2 of 1/2 of English muffin with 4 bites of grits after only 1 meal yesterday. I had to fight nausea to keep that bit down. I also have urinary pressure and frequency and an episode of incontinence 2 days ago where I woke up wetting bed.

I do not want to wait in case I have early stage ovarian cancer that is rapidly progressing and may be late stage in 2 mo. I am new and could use advice/support.

Would u wait with my history? Of course I'd be thrilled if I do not have cancer. Anyone have trouble getting diagnosed quickly?

[GwenHP]

Based on your description of what is going on, I would not wait. A frustration of this disease is getting it diagnosed. Because it is rare, some doctors tend to exclude other things first - at the cost of letting the cancer spread because of a delay in considering ovarian cancer.

Is there another local gyn that you can go to? I was given some advise when I was in my late 30's. I was told to find a gynecologist that isn't also an obstetrician. Ob/gyn's tend to focus more on kids and pregnant women where as gyn's tend to focus more on women's health.

I'm not that surprised that the gyn/onc didn't take you. It seems like many gyn/onc practices won't take you on as a patient unless you have a presumptive diagnosis of ovarian cancer. Once you have some evidence of the disease (such as elevated CA125, transvaginal sonogram and or CT Scan indicating something suspicious) you can sometimes self refer to a gyn/onc. That's what I ended up doing.

I wish you luck and pray that you find answers and in the end it isn't cancer, but something more benign and easily treated.

Gwen

[eileen_alberti]

I tried to get diagnosed for who knows what for 2 years. I feel your pain in your struggle to get diagnosed with whatever is going on. You sound very familiar to me except for the vaginal bleeding. I had hysterectomy in my 40's but had my ovaries. My avenue was my primary to surgeon to ct scan with contrast,you must have contrast for ovarian to show up. Then it was stage 4. And they wonder why I'm angry. But my [new] primary is my champion. She was telling me I had ovarian on my second visit. BTW, my blood test showed I was in perfect health. So much for that too. I try to remember that medicine is still in the "practice" stage. Wishing all blessings on your search Eileen

[Lizchips]

Yes you need to find a women obgyn surgeon. Get another opinion. I think women docs are more aggressive. Also prior to my diagnosis my stomach enlarged and I dropped 10 lbs. Don't wait. See another Dr. Or go to a good ER. They can refer you to there obgyn surgeon they use. Or call around use Google. My Dr is in Palm springs. Dr Amy Hakim she's a surgeon. I was referred to her after I passed out and had to be transported by ambulance to the hospital. Best wishes.

[Lizchips in reply to Lizchips]

Please try to get Into see someone else. I was misdiagnosed 6 times by the same male Dr. Kept saying that I had pelvic inflammatory disease. Never once mentioned ovarian cancer. It took an ER Dr to figure it out. Crazy.

[GwenHP]

One last point. If whomever you go to does determine that it is likely to be ovarian cancer, please make sure to go to a gyn/onc for the surgery. They are the only doctors trained to do the proper staging that is necessary.

[DSK-C SHARE Volunteer]

At age 64 I had post menopausal bleeding. My gyncecologist first suspected it was a thin lining of the uterus and prescribed birth control pills, followed by a course of antibiotics when the first control pills did nothing to halt the bleeding. I changed gynecologists and my new gyn suspected a uterine polyp. I had a transvaginal ultrasound and a hysterosonogram but nothing could be seen because of uterine fibroids. She then decided to perform a D&C to look for the polyp but again it couldn't be seen because of the fibroids. Ultimately, she recommended a hysterectomy. At this point I was bleeding for two months. I had no other symptoms of ovarian cancer. Fortunately, she referred me to a gynecologic oncologist. Unexpectedly, they found a malignant tumor on the fallopian tube.

I would see a gyn/onc immediately. If you must see another gyn first, then seek out another gyn. I would not wait another two months. Obviously, something is going on and you need to determine what it is. Good luck with your quest. You are right to want to seek immediate resolution of your issue.

[Fighter2014]

I would get a second opinion I was stage 3 before anyone diagnosed me. Don't be afraid of the number I am in remission and my PET scan showed nothing. Do get a second opinion though.

[Tesla_7US]

Get a second opinion immediately! Do not wait. You have classic OC symptoms. Have you had a CAT scan? TV ultrasound did not pick up my cancer, neither did endoscopy, colonoscopy, Pap smear, or a bladder look see. Epithelial O C grows on the outside of all your organs and does not infiltrate until advanced. Do not wait!!!

[schulerjm]

At age 64, I am not sure why they are trying so hard to get you to keep your ovaries unless you are a high surgical risk. Diagnosing ovca is a buggar! CT scans do NOT always show disease....especially little implants.....as you stated the CA 125 is not accurate for all and the physical exam often times reveals nothing.

Definitely get a second opinion. It took me 8 months to get a diagnosis (I was 43 at the time and had no family history) and was at stage IIIC by the time I was diagnosed. Having said that....please know there are other reasons you may feel full and have nausea/vomiting.....and those can bowel related reasons.