Thanks for the words of encouragement! I have really been trying to focus on the details of getting ready and all my pre op stuff. But for some reason today has not been a very good day emotionally. For some reason I just can not stop crying. It is just exhausting. Sick of worrying about this. I guess one thing I did wrong was more Internet searches and that is a very scary thing! I ran across some medical sites that claim that when a cyst is larger (mine being 22cm) then there is a higher chance of it being malignant. I just want answers and am so mad that I am in this situation right now. My oncologist said that he believed that it if was something bad that there would be clear signs by mow. But what? I still don't really understand that. I have regular periods, no spotting. All other symptoms are not very clear. I feel like everyone has a few of those! Just wish I could stop being so scared and believing mow that it is cancer. The crying is just making me feel sick! Sorry to be venting but trying not to make my family nervous so trying to hide it from them.
Praying for you, please keep us updated.
If it's benign, the surgeon probably will leave an ovary behind. Ask before the surgery and be sure the doc knows what you prefer.
My mass was 14 cm. One mass on one ovary. No spread. That's classified as 1A and that's the most curable situation. My doctor is aggressive, so I had six rounds of chemo. I didn't like doing it, although it wasn't a horrible experience. Losing my hair was the worst part. Bought an expensive custom wig because I had two important family events during that time frame; I wanted to look okay in the pictures, and I didn't want to be the star attraction. Most people weren't sure whether it was my hair or a wig. (See I'm still more obsessed with my hair then with the constipation that was the worst side effect of my chemo.)
My doctor doesn't expect a recurrence. I still see him, though, because the risk is very, very low but not zero.
I know it's nerve wracking. Try, however, not to worry until you know what to worry about. Before your surgery, you may want to shave wherever they might put a bandage. (Arms where they'll put IVs, etc.) Worry about surgery prep, having food in the house when you get home, etc. And the results of the surgery when the time comes. Maybe there won't by anything to worry about!!!
Good luck.
Yes...I do feel like I am in good hands. My gyno had me take the OVA 1 test even before I went to the gyn onc. That did come back elevated at 7.5 out of 10. I guess that anything 5 and over can be a sign of something. I do know that this test is not a sure thing. Right now I am trying to be positive and thinking that if something this big was malignant that it would have already caused some issues! Right now I am trying to decide if it is benign ...should I try to keep the other ovary. I do hear there are benefits to having natural hormones. How large was your cyst? Nine years and no recurrence is wonderful news! How did they decide to take what they did?Wish i could find more info on such large cyst. Just can not wait for surgery and get this over and done with! Hoping for no more thoughts of cancer! Just ready to start healing.
Glad to hear you had a happy end to what I am sure was a very scary time.
Sounds like you are in good hands. The old hands on this forum believe fervently in using a gyn onc -- he or she won't mind if your mass turns out to be benign, I promise.
If they haven't done a CA-125, request one. My doctor skipped that before surgery and now we don't know for sure if it would predict a recurrence or not. (That's the best use of the test, but it isn't always accurate.) If the doc refuses, make him/her explain why.
I have a long scar, too. That's because they took not only my uterus and ovaries but also the omentum and the appendix plus, I think, some lymph nodes for pathology. I don't mind the scar as I'm nine years past the surgery with no hint of recurrence.
Hoping that everything will turn out well for you. Please keep in touch.
So surgery is on July 21st. Have decided to go ahead with a full hysterectomy. That is also very scary but not as scary as the thought of this being cancer. My oncologist said the cyst is 22cm and appears to be fluid filled. There are some veins on the side. He also warned me that the incision may need to go up past my belly button. Not really worried about that. Just still very worried about it being cancer and now dealing with the idea of a forced menopause. Hope there are no long term effects of not keeping at least one ovary.
One foot in front of the other. I like that but still just want to cry l the time. I just wish that if they have you take a test like the ova1 that you would get more solid answers. So my level
Is elevated but that still could mean something or maybe not? Plus I really does not help to look all that info about oc. Those symptoms are things that I believe most of us have at sometime or another. So it is so each to convince yourself that you have it. Just want the stupid thing out now and to get some real answers. It is just so scary! It really does help to have a place to go to (even over the computer) with so many wonderful people with kind words and life experience.
Now it is simply one foot in front of the other until you know what you are dealing with.
It is wonderful your doc referred you to a gyn/oncologist without being asked to do so. He or she is definitely looking out for your best interests.
Waiting is difficult for all of us but is part of the program.
Just keep going with your tests and scans so your medical team can know what they are dealing with and how to best help you.
Remember you are, and must always be, your strongest advocate.
See only medical teams you are comfortable with, be honest with them, and, let them know what you need and what your fears are.
They want to help......you have to help them, however.
Hang in there.....keep us posted.......and , know there are women here who have been where you are and they want to help.
We are here for you.
Peace.
dian
So I just got back from doctor. She wants me to now see a gyno/onc. The test he did wa actually the ova1 and my level wa elevated at 7.5 . 5 and higher would be elevated. Just really worried now that it will be cancer. I know the only real way to know is after surgery. She has also ordered a CT. Doctor Aldo said it is a complex cyst filled with fluid and shows some vain like images on one side. What now?
Thanks for the input. I did have the blood test CA 125 and go to the doctor in the morning for the results. She has already told me that it will need to be removed. Do not look forward to the recovery. She already warned me that it will be a large incision. My worry really is about it being cancer. I know now that most are not but it is still very scary. Worst is that they make some women wait so very long for the result of the biopsy. Is it a case of something so big(20cm) just be annoying and it's usually the little ones that are dangerous?Jane, how long did it take for you to find out about your biopsy? Sorry to hear that but thank goodness it was stage 1. What kind of treatment did it require?
I second what Gail has said. Please consult a gyn/oncologist. That is the most important step. I had a 24+cm cyst, which was both cystic and solid. Mine was found by an exam and then a CT scan. I immediately was told by my PCP to consult and gyn/oncologist and he helped me find the best. Mine turned out to be cancer, but it was Stage 1A, Clear Cell.
A doctor should never say it won't rupture, that is untrue. You can only hope it doesn't rupture, that again is why it is important to have the right doctor.
Best Wishes to you and please keep us updated.
Jane
Your doctor may be referring to a CA 125. This cannot diagnose ovarian cancer but can help aid your doctor in determining further testing. Nothing but a biopsy done at the time of surgery can diagnose ovarian cancer. The good news is that more than 90% of ovarian cysts or masses are benign. But there is always a chance so you do want to take care of this as quickly as possible. Since surgery is in the picture, you should see a Gynecological Oncologist. They are specially trained to remove cancer of the reproductive organs and debulk (remove residual cancer) the areas that are close-by. Although you can't know if it is cancer prior to surgery, you shouldn't take a chance. A gyn/onc can offer the better outcome. Once you get the test results back, you'll probably have a CT scan and/or a transvaginal ultrasound. The results of all these should help determine your next move.
Some people lose weight, but not everyone. That's the thing about ovarian cancer. It's so sneaky and not everyone has the same symptoms. Frustrating, I know! Wish I could offer something more to help give you peace of mind, but you're on the right track to figuring this out. Good luck to you and please let us know how things go with testing.
Gail