Anyone with personal Ovarian Cancer experience, advice please!

[djoyg]

Please lend an ear, a shoulder...any advice! Advance apologies for long post...

I'm 40, a single mom, with 4 sons. I am a multiple skin cancer survivor, and I am currently undergoing surgeries and chemo follow-up for squamous cell cancer, which has possibly added to my current confusion. I also have a history of melanoma & years ago 1 precancerous breast lumpectomy---1 benign breast lumpectomy.

Just over a month ago I noticed left sided groin pain, radiating into my hip and even down my leg. The pain is severely worsened upon sitting in the car or a straight chair. A week after the pain began, I had another skin biopsy on the shin of that leg and so I assumed it would be positive and the groin pain was the skin cancer having spread to the lymph node. The pain was so unbearable it was keeping me up at night, so I went to see my rheumatologst, thinking it could be arthritis. She said no, and confirmed there was lymph node swelling, advised heat and rx'd pain relievers. The skin biopsy came back as precancerous...but the groin pain continued. I called my rheumatologist, she advised going to see a lymphoma dr. By this time, I had noticed my abdomin looking bloated even though I have lost some weight, my kids keep asking me if I'm pregnant. And now, for about a week I've had gas that seems completely unrelated to what I've been eating. So much so (I know, I know...to much info) that several times I have farted as I have had orgasm, which has never happened before. I went in to see my gyno Tuesday, as that seemed more realistic than a lymphoma dr. My period had just ended, (they have been slightly irregular the last several months) and I'm not certain if the pain is slightly better or if I'm getting used to it or if because I take the pain pills----you know??? So, I really don't want anything to be wrong, and now I'm worried that I may have down played this to him. He did the pelvic exam and when he touched my left ovary, I screamed, bit my hand to keep from kicking him and literally cried, tears running down my cheeks.
He did an ultrasound and said he didn't see anything. And the lymph nodes in my groin are no longer swollen.
He suggested that I probably had a cyst, that it ruptured on it's own and that the pain is now slowly starting to feel better and would resolve. Call him if it doesn't or if it worsens. I felt a huge sense of relief and couldn't wait to leave.
But since then...the pain has been worse. I've been telling myself it's because he manipulated my painful ovary. That I had to sit in the car in traffic for too long yesterday...ok, but let's face it, I'm worried. I slept well the other night, and I still had to crash out for a 2 hour nap mid-day...could not stay awake. 2 of my kids have noticed and asked why the whites of my eyes seem yellow. (???) My left leg is still stiff and sore, my youngest subconsciously rubbed by swollen belly while in line at the market yesterday afternoon and said he's always wanted 2 sisters.

And then, I read Gilda Radner's story, about how she was 40 and had very similar symptoms as I am having, was given a ultrasound and told there was nothing they could see...yada yada yada...

I've told myself I'm going to give it until Friday and then call my gyno back. If the pain continues, is it possible to request that he goes in and removes the ovary? Or is that psycho? I just got back from a follow-up skin cancer appointment, and that dr. asked about it, and wondered if it could be a groin-pull. But with the obvious ovary related pain?
Here is what I am looking for from women with experience:
What were your symptoms? Was it difficult to diagnose? How would you advise me?

Thank you so much for your patience, support and answers,

d.

[crecco]

I am glad to see that you persisted and did not just let this go, as you know your own body and you know that something is not right. Your Dr is right about the CA125, but if it is done and an elevated reading shows up, along with something suspicious in the CT scan, then it is more likely to be something to look at. My major symptoms were abdominal pain, constipation, lower back pain, weight loss, and, "lumps" all over my torso.
I hope that they find the cause of your pain and that it turns out to be something besides cancer. But please let us know what you find out.
Chris

[butterflytc]

Good luck with your Ct, hope you get an answer to your pain, and that is something easier to fix than Ovca.

[djoyg]

He's set me up for a CT Scan today at 1:15 at the hospital.  I hope at the very least to have some answers soon.

d.

[djoyg]

He already did a transvaginal ultrasound when I was in on Tuesday and said he couldn't see anything. He said he didn't like to do the CA-125 test because of so many false results. I phoned his office back in the afternoon yesterday, he was in surgery, they asked me to call him back this morning after 9am (it's 8 here) so I will persist until I reach him. The pain woke me twice, but I was able to get back to sleep, I woke up in pain.

Thank you everyone, I have to get all my kids to there various summer schools!

d.

[Brownie3321]

Wow honey, something seems up if you screamed in pain when he touched your ovary. My symptoms were major bloating, unexplained weight gain, fatigue, and pain when I had my ovary touched as well. Ovarian cancer is a rare cancer to have, but time is VERY important when you are in the first stages. I would ask for a transvaginal ultra sound and a possible CT scan if they will allow it. Best of luck to you, ,Deandra

[Sharon2714]

.. and if u still feel pain and still feel that something is wrong ... trust your instincts ... find a second doc ... im moving my post about my second opinio to a journal entry
lifting u up in prayer
sharon

[dustinsmom2004]

If you are still experiencing pain then go back to the doctor, that is what his instructions were to you in the first place. If the pain is severe enough to make you bite your hand so as not to scream when that area is touched go to the emergency room. That is not normal, in the er they will probably do a cat scan and an internal ultrasound. Please do this, you could be right and it is a cyst that ruptured but  why take chances when you have children? When I was first dxed with uterine cancer they removed the cancer they saw when they did my c-section, within two months my periods were nothing short of horrendous. I thought ok good problem solved. Exactly a year and a half later I had 3c ovca.  I have five children, when I look at them sometimes I feel guilty because I put it off for so long, and did the wait and lets see approach instead of having a radical hysterectomy when I delivered my twins

[marie3B]

I have a high tolerance for pain, too.  I think that is part of why my docs I used to go to did not believe me when I said I thought I had ovarian or colon cancer.  Your doc is right not to rely on a normal CA125 as a sign of being cancer free.  Mine were low. They kept increasing each year, but my old doc was not concerned since they were still w/i normal. Mine went from like 2 in '04, to 5.5 in '05 then 10.5 in '06.  She never told me the #s. Just that I was normal.  She should have noticed they were doubling each year and did follow-up tests. I wish you the best and am looking forward to you coming back and saying that they found your problem to be minor......not cancer. Marie

[djoyg]

Thank you so much for writing!
My gyno said he doesn't trust the CA-125 because it is so often wrong that it gives a false sense of security. His office is out for lunch now, but I will call them back and see if I can get back in for tomorrow or Monday. I'm going to remind him of my huge fear of hospitals, my high pain tolerance (i always went home within 12 hours of each delivery and didn't always have an epidural) and tell him I am ready to have him go in. Maybe that will convince him of how extreme the pain and other symptoms are.

Thank you again, continue to be well.

[marie3B]

I had all of the ovca symptoms and a stong family history of ovca and still it took years to diagnose.  It did not show on the trans vag ultra sound or on the CA125 at my yearly check ups.  Last summer my belly swelled up to look like I was 8 months pregnant.  I had an appointment scheduled in a few days so I waited for that. The night before I tried to go to Walmart, but was unable to walk from car to the door.  Went to doc next day.  The HUGE tumors did show on the ultra sound and I was sent to hospital.  One tumor almost as big as a soccer ball on R ovary. One not as big on the left.  Colon resection needed. Had a huge rectal tumor too.  Surgery got all but nodules on diaphragm.  Had chemo.  Some implants still visible after chemo, but it is not growing right now.

If you don't feel right, keep pushing for answers.  If you do have a problem, finding it early is sure your best hope.  I wish you the best.  You are probably okay, but it pays to be sure. Marie

[djoyg]

He did the transvaginal ultrasound on Tuesday & said he didn't see anything. I was so relieved at the time, it didn't occur to me until the pain was ever enduring that it may NOT show up on ultrasound. I know you can't rely on google for everything, but that was basically what I learned, that a clear ultrasound may not mean nothing is there.

I will probably call him back before days end.

Thank you for your reply, be well.

[msjazz]

I had bladder pressure pelvic pain first. Six months later, it was painful to lie on my right side. It quickly went from there to a pullling pain where I would go out to the car at work and lay the seat back for relief. I would request  transvaginal ultrasound, and probably a CT asap. One or both of these usually show ovarian cysts and cancer. Don't delay as I did. Hope it is something minor they can take care of for you.