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Old 06-25-2008, 07:54 PM   #1
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Anyone who has experience with Ovarian Cancer...

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 sqamous 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 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 yesterday. 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 today...But let's face it, I'm worried. I slept well last night, and I crashed 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 this 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? 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.

 
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Old 06-26-2008, 05:46 AM   #2
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Re: Anyone who has experience with Ovarian Cancer...

Dear Djoyv,

I am sorry you are going through this, especially after you have gone through so much already.

I seriously think that you need to find a doctor who will do the necessary tests in order to find out what is truly wrong with you. Ovarian cancer symptoms definitely include bloating and abdominal pain but the yellowing of the whites of your eyes may suggest a liver or pancreatic issue (something biliar). Have you had an ultrasound to check for any abnormalities ? Also, a CA-125 test in not a bad idea in light of your past history. This is a test that checks for a cancer antigen that is normally present with ovarian cancer. It is not always reliable but if the numbers are truly high (over 35) then it begs further testing (such at a CT scan). It is a blood test that can have results quickly.

You KNOW there is something wrong and even your children are telling you that something may be wrong. Go and get the help that you need as soon as possible so that you can be treated early. The issue may be completely unrelated to cancer but in light of your past history (breast), you need to rule it out. Any doctor worth his salt would know this so either get him to do what is necessary or find another doctor who will. List your symptoms to him or even write them down before you go, so that you will neither downplay nor forget them:

- severe bloating and gas
- extreme pelvic pain
- pain in the leg (swollen lymph nodes ?)
- jaundice
- note any others such as bowel movement irregularities, appetite issues, nausea, urgency to urinate, pain during sexual intercourse (just throwing these out there .. they may not belong to your situation but keep them in mind)

Insist that they check for both ovarian (CA-125 blood test and abdomino-pelvic ultrasound), gastroenterology (colonoscopy or sigmoidoscopy) and bile duct issues (liver, pancreas, gall bladder). Insist that they rule these things out .. this is what they SHOULD be doing so MAKE them do it. If your children are old enough and you trust them, get someone to go with you so that they can help.

I am sure that you will find your answer soon so that you can get going on a suitable treatment. Come back and let us know how you are doing and if you need moral support. We are here. Just keep in mind that I am not a doctor .. only a physician can truly assess your situation so you need to see a good one soon so that you can put your mind (and body) at ease.

Take care.

Estria

 
Old 06-26-2008, 09:22 AM   #3
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Re: Anyone who has experience with Ovarian Cancer...

Thank you for your reply, estria.

When I saw the gyno on Tues. he did an intravaginal ultrasound and said that he couldn't see anything...at the moment, I was simply relieved. But then as the pain has continued and my children keep noticing things, I did a search and have found that by the time cancer is noticed on an ultrasound it is usually advanced and many times not noticed by ultrasound at all.

I had asked him about the CA-125, to which he said it comes back with false positive so often he only does it if he is going to do a surgery and he needs to know if an oncologist show possibly be present.

When I went to see him, I had printed out a calendar with my recent symptoms. I haven't really noticed pain with intercourse, but there have been 2 times when I did not have orgasm with intercourse and I believe this was just due to the pain in general. I probably should have reminded him of my high pain tolerance. He delivered my 2 youngest, but that was 9 & 7 years ago. I think I have been very eager for nothing to be really wrong, so I was happy to hear 'ruptured cyst---will get better' and run out of the office. But I'm not feeling better and I'm getting worried.

I told myself I would wait until Friday to call him back if the pain and everything was still the same, but now I think I should call today.

Again, thank you for your reply.

 
Old 06-26-2008, 01:51 PM   #4
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Re: Anyone who has experience with Ovarian Cancer...

Hello again djoyv,

The symptoms of a ruptured cyst are not exactly as you describe. Ruptured cyst symptoms will include nausea, diarrhea, perhaps vomiting and an incredible amount of pain at one time. Then tenderness in the area which gradually dissipates as the liquid is absorbed by the body. You would know if a cyst ruptured as it is a very intense event.

I wonder, are you by any chance on oral contraceptives ? If so, this needs to be addressed by your physician. For example, oral contraceptives put you at increased risk for a benign form of liver tumor which sometimes bursts and releases blood into the abdomen (causing a lot of pain). This is very rare but it does happen, especially if you use oral contraceptives.

As to the CA-125, yes you may get a false positive and even a false negative (Stage I Ovarian cancer is difficult to detect with this test) but if he is willing to rely on it for surgery why on earth would he not do one now ? He is right that it comes back false positive, especially with women who have endometriosis and this causes a lot of anxiety but I think that you are feeling quite a bit of anxiety due to the unknown pain as well. I have read that sometimes even menstruation causes an elevated number and this is why I went outside of my menses for my test. It may help point you in the right direction, or away from the wrong one.

If you are still bloated and in pain, you definitely should go back in there and demand that he find out what is wrong. Simply telling you it was a ruptured cyst without having any proof (such as liquid in the abdomen, for example .. a ruptured cyst is painful because it leaves liquid in the abdomen which is not easily absorbed by the body) is simply irresponsible. I am getting so sick and tired of doctors brushing off female complaints. As a 40 year old female you are also at increased risk for gall stones so it may be something as simple as that. More tests are required to find out what is wrong and fix it.

Hang in there. I am sure that you will find the answer and be just fine in a very short amount of time.

Take care.

 
Old 06-27-2008, 05:33 PM   #5
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Re: Anyone who has experience with Ovarian Cancer...

Well, I woke up twice in pain last night and found it hurt in my lower abdomen to push on the parking brake this morning. I phoned the gyno and told him. At first he suggested going to the hospital for another ultrasound. I asked him what the next step was if it was negative/what the next step was if it did show something...he said a CT Scan either way. When he heard himself say that, he said he would just call in for a ct scan. I hadn't had anything to eat or drink yet, they scheduled it for 1:30.
Then all the drama began. I went to the hospital, only to find out that my insurance 'preferred' that I go elsewhere, because the hospital charged more. After two hours of phone calls and bs, I ended up and an imaging center, only to find out that the dr. had ordered a ct of the pelvis & abdomen & the insurance only gave authorization for the pelvis.
I paid the difference.
Now I will wait and see.

I do not take oral contraceptives or hormones of any kind.

I did get ****** that the dr. would write an order for a test and the insurance would simply deny part of it and the imaging place was just going to go along with the insurance. Not the doctor's orders. I was like, 'Look, I'm here to find out is wrong! I don't need to come back here a second time, next week!'

When he came up with ruptured cyst, I think I was just hopeful that it wasn't something more serious and happy to take a benign diagnosis. At this point, with the pain and bloating, I really just want an answer.

 
Old 06-28-2008, 02:13 PM   #6
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Re: Anyone who has experience with Ovarian Cancer...

Hello again,

Yes I totally agree that all of this insurance stuff is not helping the situation. I think you did the right thing to pay the difference. When all of this is over, see if you can try to get this reimbursed yourself .. ie. by saying that your doctor ordered both pelvic and abdominal scans. For now, just move forward.

If the CT scan is negative, you can always suggest that they look at the colon next. This is in the same general area and certain problems may present with some of the symptoms that you are describing. At any rate, don't stop until you have a valid answer .. something that truly makes sense to you in your heart of hearts. And just because you have not found the cause, it does not mean that it is not benign. It may indeed end up being something like an appendicitis (which is often mixed up at the hospital with ovarian cysts).

Hang in there, you will find an answer very soon, I am sure.

 
Old 07-03-2008, 03:55 PM   #7
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Re: Anyone who has experience with Ovarian Cancer...

I'm new to ovarian cancer, but I can tell you of my mother's symptoms. Her gyn/onc told her that her pain was due to a cyst that was rupturing (abdominal pain). Then the pain came back gradually. The doctor did another scan and told her that it was not cancerous, just growing. After going to the emergency room twice last week with excrutiating abdominal pain, severe bloating (she looked pregnant), frequent urination, constipation, and the fact that her cyst went from 6-16cm in 10weeks, he finally removed the cyst. It was early (hopefully) stages of ovarian cancer. Her CA-125 was an 8. Nothing scientific here, but just thought I would let you know what she had been experiencing. We are dealing with amdrag your feet Dr, and are know going to go somewhere else for a second opinion. My advice is, go somewhere else if you are not satisfied. If we would have gone for a 2nd opinion 10 weeks ago, it might have prevented the perforation of her malignant tumor! Best of luck!

 
Old 07-04-2008, 10:39 AM   #8
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Re: Anyone who has experience with Ovarian Cancer...

Hello Hoppy,

I am sorry to hear your news and hope that they got everything. Will they be doing any chemo ?

I was wondering how old your mom is and what kind of cyst they found ? Did it have liquid components in it or was it a solid tumour ? If you mom is postmenopausal and the cyst was either complex or solid, then how on earth would the doctor know for sure that it was not cancerous ? Did he tell you this ?

Dyovi, I agree that it is not a bad idea to seek out a second opinion about your symptoms. If after your CT scan results you do not get information from your doctor that makes sense, go somewhere else. I absolutely love my doctor to death and I still went to get a second, third and even a fourth opinion about my simple cyst. It was only after hearing the same thing from four doctors that I finally decided to take their advice and even then, I keep a closer eye on it than was recommended. When it comes to your health, caution is always better.

Take care of yourself.

 
Old 07-05-2008, 08:49 AM   #9
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Re: Anyone who has experience with Ovarian Cancer...

Estria,

My mom is 58. Her cyst was of epithelial origin, and mixed components of fluid and solid, with increasing fluid of course over the past 10 weeks. On her firts visit with her gyn/onc he told her that he was sorry that her GP got her so worried that this was ovarian cancer. He told her to go on family vacation and not to worry, he would do another CT when she got back to confirm that it was just a rupturing cyst. WRONG!!!! She will be getting chemo, but we are going to pittsburgh for a second opinion late July. In the ER the DR told her that she had a spot on her lung that she needed to have checked out. Her gyn/onc told me that he thought it was just granulomatous, and that he would just check it when he did her next imaging in 3-4 mo. I asked him if we could just do it now since she is already in the hospital and he said there was no need. I'm so frustrated with him that I can not even see straight!!!!!

All I can do is encourage everyone out there to get 2nd opinions!!!!!!

 
Old 07-05-2008, 07:16 PM   #10
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Re: Anyone who has experience with Ovarian Cancer...

Hello Hoppy,

You have every right to be upset with your doctors ! What the heck is wrong with them ? Ovarian cancer can be cured if caught early enough. If your mom's CA-125 is only at 8 then it is extremely likely that the cancer is at stage I. This is great news but things have to be done.

I don't understand why they would not have recommended at least a laparoscopy to biopsy a complex cyst in a post menopausal woman. This completely behooves me. A large percentage of complex cysts are benign but normally they even recommend you remove them in pre menopausal women and most definitely in post menopausal women simply because your risk of everything after menopause goes up. If ovarian cancer is present, it often looks like a complex cyst (unfortunately for our mental health, however, benign complex cysts are very common). How on earth would a gynecologist or a radiologist have known that a complex cyst in a post menopausal woman was benign just by looking at it ?! Only a biopsy could confirm this.

As for the spot on the lungs, this could well be another issue but in light of recent events, it certainly warrants checking out asap so don't listen to these people anymore and get them to check it out (you are definitely not crazy to want this done). Also, see if you can find out what kind of ovarian cancer your mom has. If the cancer did not spread during the ten weeks (ie. only got bigger but stayed reasonably contained), she may very well have what is called a borderline cancer which moves much slower.

A friend of mine who is 60 years of age was diagnosed with a form of epithelial cancer of the abdomen which behaves exactly like ovarian cancer. She was diagnosed last fall and after a few rounds of chemo, she had surgery to remove her uterus, ovaries, omentum and some of the tumours that had spread. After this she went through 5 rounds of chemo that was injected directly into her abdomen and now she is cancer free. She still has to go back for scans on a regular basis, of course, but her cancer was in its last stages when it was diagnosed. She had gained 33 lbs of ascites (fluid) in her abdomen, had bowel issues, pelvic pain and was unable to keep anything down. Unfortunately she waited over a month before going to see a doctor. She is a very strong lady and hung tough through her final rounds of chemo and she is now looking at it from the other side.

Your mom is very lucky to have you to rely on. Don't underestimate yourself in this whole process and stick with her through everything. I have no doubt that you will be more instrumental in getting her through this than her doctors will.

Take care of yourself and my best wishes for your mom's speedy recovery.

 
Old 07-06-2008, 10:10 AM   #11
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Re: Anyone who has experience with Ovarian Cancer...

Estria,

Once we are no longer under the care of this dr I plan on writing a letter to the medical board. The radiology reports indicated that it was suspicious, the dr just flat out didn't look at her results until my dad refused to leave the ER until something was done. I feel that he was negligent, and is still being negligent. The more people that we tell mom's story too the more horror stories we hear about this dr, so I will be relieved when we have her under the care of someone else. She is a strong willed woman and I know that we will all fight this together. But, it's hard not to get upset. She actually went to the dr when she started having symptoms, she did not put it off but he put her off. TO ALL OF YOU WOMEN OUT THERE-ALWAYS GET A SECOND OPINION!!!

Hoppy

 
Old 07-06-2008, 10:16 AM   #12
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Re: Anyone who has experience with Ovarian Cancer...

by the way-her preliminary diagnosis is st1c. path results should be back in two weeks, then we will get diagnosis.

 
Old 07-06-2008, 05:58 PM   #13
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Re: Anyone who has experience with Ovarian Cancer...

Hello again,

I think you definitely should complain to the medical board regarding this physician, especially if the radiology lab said it looked suspicious (!). You may even have grounds for a law suit there.

If the scan looks like Stage 1c then this is great news and it was still caught in time. The pathology will probably tell you what kind of cancer she has and this will probably determine her treatment. With stage 1 she may be able to get away with only the debulking surgery and not have to do chemo at all. Otherwise, it will probably be a few rounds of chemo followed by surgery but no chemo after surgery. This will make a HUGE difference for her state of mind as the chemo that is injected directly into the abdomen has a lot of side effects like depression that you have to be ready to deal with. The pre surgery chemo does not seem to be that bad and most women tolerate it extremely well.

Don't feel bad .. at least you were all cognisant of what was happening before things got much worse and you acted quickly. Imagine if you hadn't and kept doing what you were told. You did very well under the circumstances.

Hello Dyovi,

How are you doing ? Are you managing to get to the root of your problem ? Let us know how you are.

Regards.

 
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