Aa
How did you get diagnosed? I am so upset and need advice!
posted recently in this forum about some issues i have had recently, and i was waiting on results from my well woman exam, and then i was going to discuss the issues i have been having with my OBGYN. I sent the doctors office a message online, seems you can send it directly to your doctors office (their phone system takes forever), and i told her some of my symptoms and how i was a little concerned. She came back and said it sounds like constipation, and recommended some laxatives. I am constipated, but i am certain it is not due to constipation. I have been consipated before, and never had back pain, a pelvic tugging feeling, urgency/frequency with urination, and bloating along with it. I also told her i was concerned it might be due to the ovarian cyst i had. Aren't OBGYN's supposed to see if cysts are cancerous, and make sure they are shrinking not growing? I feel completely ignored and unimportant. It is hard enough finding a doctor you like, especially something so personal as an OBGYN, and someone you are trusting to deliver your baby. I also asked when my test results would be back and she said she had them already and told me my urine all came back normal (which is weird seems the day before the urgent care place told me i had microscopic blood in my urine), and my pap was slightly abnormal and needs to be repeated in 6 months (This is nothing new as i had an abnormal one before). I was wondering who diagnosed your ovarian cancer? Was it your GP or OBGYN? She seems really nice in person, and everyone gives her really good reviews which is why i went to her in the first place, but why did they not call to tell me my results? And would she not look further into my symptoms being that they are all symptoms of ovarian cancer? I can't help but sit here and cry. I am no closer to finding out what is causing all of my issues. She just told me if my smyptoms continued to see my GP.
Transvaginal is inside the vagina. I am not sure if Pelvic means across the abdomen or not but I do know that transvaginal is inside. If you have to drink lots of water before hand you may be having it both ways. When I went for my first US I had to drink a lot of water so that they could see THROUGH the bladder, then completely empty my bladder for the transvaginal US. They can't see it transvaginally if you have any liquid in your bladder. Hope this helps!
I am glad you are having the test. Mine was very accurate. They could see a lot I was surprised. The CA 125 is accurate with some people and not others. For me it is accurate. At the beginning of Ovarian Cancer there are no symptoms. The truth is the only way to truly tell is to see the Ovaries surgically. That is not really practical so Doctors have to make educated guesses. Hopefully they will one day have a good blood test. I hope you do not have Ovarian Cancer.
Alex
Alex
Maybe it is another word for a transvaginal? They told me to drink water too before my test. I feel relieved i am finally getting this looked into, but also pretty scared of what could be. How accurate would you say the ultrasounds are in detecting ovarian cancer? I was a bit concerned she would suggest only the blood test, as i hear it is very inaccurate. Also i was wondering if symptoms indicates advanced cancer more often than not?
I am not sure if a pelvic is the same. I had a pelvic in the doctors office and it was not the same it was an ultrasound. I can't remember if the probe went inside or was just outside. With transvaginal I had to drink all this water so they could see things and the probe went inside.
Alex
Alex
Thank you all for the awesome feedback which has been even more insightful! FINALLY! I went back and told her my concerns about ovarian cancer, and i know it might sound crazy, but i have never had all these symptoms with constipation, and she said she understood my concerns, and would do a pelvic ultrasound just to see, and if it is all clear, she will refer me to a GI. Does anyone know if a pelvic is the same as a transvaginal, and how accurate they are at detecting? She never mentioned the blood test, but from what i have heard i would rather have the ultrasound based on how the blood test doesn't sound too reliable.
Hi Skylar,
I completely sympathize with your situation. I am going to tell you a long story that will hopefully cause you to push for action.
I just had surgery for a complex ovarian cyst today that had been there for several years. I went through a similar experience. Basically i had 3 ultrasounds of the cyst over 6 months during 2011-12, and no one was calling me back with results, following up, or exhibiting any concern. (Two docs were dealing w/ this - my GP and my Gyn.) As a patient (and I'm an educated person; I teach college), I couldn't decipher the ultrasound reports despite excessive googling of all the ultrasound terminology - some of the reports were very poorly written. I didn't understand how dangerous a complex cyst can be - that they can be cancerous, and that my cyst had both solid areas and septations which both increase potential for a cyst being cancer.
The main problem (similar to you) was that no one cared - my Gyn never followed up w/ me and when I asked her about the cyst and her concerns, she basically said I didn't need to do anything except get repeat ultrasounds. At this point the cyst was stable (not growing). I didn't have insurance at the time, and the ultrasounds were too expensive for me to afford every month; again, my Gyn basically just said i should keep doing them anyway. But that the cyst didn't look suspicious to her and I didn't need to have it out. (Note that she was going on the very vague info in the ultrasound reports - more on that later.) In my recent research, I have discovered that ANY complex cyst is suspicious. If it grows or remains, it should always be removed.
Fast forward 2 years later; i was so fed up with these docs that I stopped getting ultrasounds and stopped going there altogether. Also, because none of them were concerned, I decided I didn't need to be. I didn't have another ultrasound for almost 2 years. I was going to wait until I had insurance to do so. When I did get another ultrasound (during an ER visit because of intense pain in my ovary), the cyst was twice its size (now grapefruit sized) and had a solid area of 4cm (the size of the original cyst,the size of a golfball). That is terrifying; solid areas in a cyst are most indicative of potential cancer (by which I mean they raise the chances of it being malignant to 10-40%).
I didn't have a gyn, and needed fast follow-up, so I went back to the same lady who said (finally!) that the cyst needed to go, but that she wasn't concerned (also after reading this even more poorly written, undetailed us report) and was sure I didn't have cancer. She referred me to a Gyn/Onc, though, to do the surgery.
What a change. This guy was amazing. I looked at the images of all my previous ultrasounds WITH HIM and he discussed them with me. When I saw them, i was horrified. So many features of the cysts had not been mentioned in any of the US reports. They had so many features of cancerous masses (papillary projections, nodules), appearing just like an ovarian carcinoma on the screen. I was terrified. While he was not displaying concern, he wanted the cyst out and scheduled me for surgery 2 days later. Meanwhile, I had been googling constantly and was totally convinced that I had the deadliest form of o-cancer. And worse, I kept thinking about my experience w/ my GP and Gyn and how they had really, really failed me on this one, to the point that I became so frustrated I stopped following up. That is the problem w/ having doctors who are unhelpful or whom you don't trust - they really destroy your faith and morale. I take the blame, too, but after seeing the pictures, comparing them to the us reports, and considering my experience, if I had had the experience w/ the Gyn/Onc earlier and had all of the information that he so amazingly and willingly offered, I would have spared myself so much anger and stress while I was waiting for surgery results.
My cyst (despite having all of the terrifying features of cancer) was benign, but given all of its features, it could so easily not have been. Either find a gynecologist who will look at us images with you, get more information about the reports, and follow up on something suspicious or explain in great detail why it isn't. OR find a gyn/onc that you can be referred to to be sure. The one I went to was not even employed by anyplace fancy - basically a hospital for lower-income people in Cincinnati who do not have insurance. He was amazing. Find someone amazing who will do his/her job thoroughly and who cares about his patient's concerns. SEriously, it will save you so much stress. And those people do exist.
Good luck,
Megan
I completely sympathize with your situation. I am going to tell you a long story that will hopefully cause you to push for action.
I just had surgery for a complex ovarian cyst today that had been there for several years. I went through a similar experience. Basically i had 3 ultrasounds of the cyst over 6 months during 2011-12, and no one was calling me back with results, following up, or exhibiting any concern. (Two docs were dealing w/ this - my GP and my Gyn.) As a patient (and I'm an educated person; I teach college), I couldn't decipher the ultrasound reports despite excessive googling of all the ultrasound terminology - some of the reports were very poorly written. I didn't understand how dangerous a complex cyst can be - that they can be cancerous, and that my cyst had both solid areas and septations which both increase potential for a cyst being cancer.
The main problem (similar to you) was that no one cared - my Gyn never followed up w/ me and when I asked her about the cyst and her concerns, she basically said I didn't need to do anything except get repeat ultrasounds. At this point the cyst was stable (not growing). I didn't have insurance at the time, and the ultrasounds were too expensive for me to afford every month; again, my Gyn basically just said i should keep doing them anyway. But that the cyst didn't look suspicious to her and I didn't need to have it out. (Note that she was going on the very vague info in the ultrasound reports - more on that later.) In my recent research, I have discovered that ANY complex cyst is suspicious. If it grows or remains, it should always be removed.
Fast forward 2 years later; i was so fed up with these docs that I stopped getting ultrasounds and stopped going there altogether. Also, because none of them were concerned, I decided I didn't need to be. I didn't have another ultrasound for almost 2 years. I was going to wait until I had insurance to do so. When I did get another ultrasound (during an ER visit because of intense pain in my ovary), the cyst was twice its size (now grapefruit sized) and had a solid area of 4cm (the size of the original cyst,the size of a golfball). That is terrifying; solid areas in a cyst are most indicative of potential cancer (by which I mean they raise the chances of it being malignant to 10-40%).
I didn't have a gyn, and needed fast follow-up, so I went back to the same lady who said (finally!) that the cyst needed to go, but that she wasn't concerned (also after reading this even more poorly written, undetailed us report) and was sure I didn't have cancer. She referred me to a Gyn/Onc, though, to do the surgery.
What a change. This guy was amazing. I looked at the images of all my previous ultrasounds WITH HIM and he discussed them with me. When I saw them, i was horrified. So many features of the cysts had not been mentioned in any of the US reports. They had so many features of cancerous masses (papillary projections, nodules), appearing just like an ovarian carcinoma on the screen. I was terrified. While he was not displaying concern, he wanted the cyst out and scheduled me for surgery 2 days later. Meanwhile, I had been googling constantly and was totally convinced that I had the deadliest form of o-cancer. And worse, I kept thinking about my experience w/ my GP and Gyn and how they had really, really failed me on this one, to the point that I became so frustrated I stopped following up. That is the problem w/ having doctors who are unhelpful or whom you don't trust - they really destroy your faith and morale. I take the blame, too, but after seeing the pictures, comparing them to the us reports, and considering my experience, if I had had the experience w/ the Gyn/Onc earlier and had all of the information that he so amazingly and willingly offered, I would have spared myself so much anger and stress while I was waiting for surgery results.
My cyst (despite having all of the terrifying features of cancer) was benign, but given all of its features, it could so easily not have been. Either find a gynecologist who will look at us images with you, get more information about the reports, and follow up on something suspicious or explain in great detail why it isn't. OR find a gyn/onc that you can be referred to to be sure. The one I went to was not even employed by anyplace fancy - basically a hospital for lower-income people in Cincinnati who do not have insurance. He was amazing. Find someone amazing who will do his/her job thoroughly and who cares about his patient's concerns. SEriously, it will save you so much stress. And those people do exist.
Good luck,
Megan
Years to find? Wow! Is it not usually advanced by then? I thought if spread pretty fast
It was my GP that finally found the Cancer. They can order Ultrasounds I have one of the best GYNs in the area. I threw up and had diaphragm spasms for two years. I lost a lot of weight I finally could not eat at all. Even though I was thin I had the pregnant looking belly. Before that I bled for two years straight may be a day off here and there. I had an ablation and still bled all the time. I had my gall bladder out and the pain still persisted. I told them I did not think it was my gallbladder. I use to call it the birthday disease because every year I would get really sick after my birthday. I would vomit a lot. I was sent to a heart specialist and a Gastroentrologist who said it was IBS. I kept going back to my GP. I was in a clinical trial with a OBGYN and the Cancer was still missed. They did a CT and it did not show up. It usually takes two years and two specialist to find Ovarian Cancer according to my breast specialist. Most cysts are not Cancerous and resolve themselves. Finally they did a transvaginal ultrasound and I was at the Oncologist the next day. The Cancer was clear to see on the ultrasound.It looks a certain way, different from other cysts. Keep being persistent. I should have pushed for tranvaginal ultrasounds every few months.
Alex
That is the only thing I would have done differently. I never had any issues with Urine. Mine was trouble breathing and blockage of my bowels causing me to throw up all my food. I went into the GP after my birthday and said something is really wrong by then all I could eat was avocado because nothing else went through the blockage. The problem is the ovaries are inside the body. Except for surgery there is no really good way to see them. They do not open you up when you have Cancer and they know you have tumors unless they have to it is risky.
Plus taking the ovaries cause problems you don't think about. I have sweats all the time. Not just a little I soak my clothes and bedding. I can't take anything because of the risk of Cancer. Plus it messes up your sexuality big time.Then there is bone density. Both my Ovaries were Cancerous so they had to go, but if they had not been Cancerous I would have kept the as long as I could.
Alex
That is the only thing I would have done differently. I never had any issues with Urine. Mine was trouble breathing and blockage of my bowels causing me to throw up all my food. I went into the GP after my birthday and said something is really wrong by then all I could eat was avocado because nothing else went through the blockage. The problem is the ovaries are inside the body. Except for surgery there is no really good way to see them. They do not open you up when you have Cancer and they know you have tumors unless they have to it is risky.
Plus taking the ovaries cause problems you don't think about. I have sweats all the time. Not just a little I soak my clothes and bedding. I can't take anything because of the risk of Cancer. Plus it messes up your sexuality big time.Then there is bone density. Both my Ovaries were Cancerous so they had to go, but if they had not been Cancerous I would have kept the as long as I could.
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