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Old 10-06-2005, 09:36 AM   #1
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Question Please Help - Need Info on Ovarian Cancer

Hi anyone and everyone,

I go to my gynocologist on Monday. I have had trouble in the past year or two, with lower abdominal pain - ovary position, I think. Anyway, 4 - 5 Vaginal Ultrasounds, 1 Biopsy, 1 CA125 test and much visits, with physicals. What started it, was lots of heavy bleeding. I am post menopausal, and should not be bleeding at all! Anyway, had ovarian cysts. They grew and then shrunk. One was the ok kind and the other was the dense (?) kind. I cannot remember the correct names! Anyway, they shrunk some and then stayed the same and the bleeding was handled with lower hormone meds.

So, now I go have a physical after 1 yr. I am going to request another vaginal ultrasound, if my gyno does not. I am having lots and lots of gas and pain in my very lowest part of abdomen, on both sides.

This is one of my questions: Can any one tell me, who has had ovarian cancer, what were their main symptoms, that made you go to your gynocologist or family dr. to start the chain of events to led to your diagnosis? I have read many things that say what a few of the symptoms are, and I do have some of them. But it would help if you could describe your symptoms better or in more detail?!

Another question is: What test and/or procedures were you given to get to your diagnoses? And by what kinds of drs.? Just checking in advance. I am post menopausal, so I could have a hysterectomy. It is just such a serious operation and takes so long to recouperate from.

Please answer soon. Please give me any info, so I might be better informed and not worry so much!!! Your help, will help me to form my ?s to my doctor on Mondays visit! And any later ones.

Thanks for any and all replies. Wannabe

Last edited by WannaBeFreeToRoam; 10-06-2005 at 09:06 PM.

 
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Old 10-07-2005, 10:14 PM   #2
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Re: Please Help - Need Info

Hi to everyone - Please read and answer if you can!!!

Please check my original post, if you have every had ovarian cancer?! Please answer if you can - it would greatly help me!!

Thanks is advance. Wannabe

 
Old 10-10-2005, 07:24 AM   #3
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Re: Please Help - Need Info

Dear to be free to roam,
I see you answered one of my replies to another thread and I think it's great that you have questions and are learning.
that's the best tool we have as woman.
this is what you wrote:
"To Linda, please see my post, which is also old. Do you have any answers for me also? How old are you? And did you have a Laprascopy before deciding on a hysterectomy? A hysterectomy is such a serious operation. If they have to take out most of everything, that is! "
I'm not a doctor so please don't take me word for word. I learned just like you are plus I suffered personally like you too. that's why I did research and asked questions too.
there are multiple places to learn about diseases. I have worked in doctors offices and have had a passion for the medical world as a little girl.
I chose to be a house wife and mommy of four and never chose an education where I could kick myself in the pants for it now.
I'm 45 yrs. old post tubal ligation back in 1998.
I feel that tubal ligation is the start of all my problems but there's no proof.
I've even had such trouble with cysts that it totally destroyed my left ovary because it got matted to my bowels and was turning necrosis. I always felt like I was having a low grade fever. plus I was bleeding heavily and in between periods.
when the dr went in, he had no choice he told me other than to remove the ruined ovary and left tube along with it due to paratubal cysts all in the tube.
I wondered and was frightened what it was going to be like for me with one ovary. I never even had a choice in the decission so was pretty upset when I woke up.
I had no problems having one ovary and tube other than chronic ovarian hemorhphagic cysts, septated cysts, and complex cysts. which can go away on it's own after a few cycles. it all depends if the cysts grow, or cause if they twist if they're on a stalk which stops the oxygen into the tube and ovary and turns it necrosis. it can turn infecteced and gangrene.
so there are problems to cysts. doesn't mean you have to have a hysterectomy.
my dr says she doesn't like to just perform a hysterectomy if iti's not causing the patient a life long problem. some woman suffer with it and effects their jobs and life style. so there are times to consider when to have a hysterectomy.
at one time it seemed like every time you turned around and dr was removing a womans reproductive system for the least little pang.
there are alternatives to having a major surgery. there are medications to consider first.
if all else fails, then they resort to a hysterectomy. especially if the woman is already nearing menopause or is in menopause or if the patient is high risk from family history, etc.
it's o.k. to do follow up ultrasounds. but if the patient is having symtoms and the symtoms of ovarain cancer is very similar to gastro problems, I can't ell you how many woman who've had ovarian cancer were told before their diagnosis that they had irritable bowel syndrome.
the gyno will refer the patient to get a full check up by a gastroenteroligist. I felt like I was being tossed between the two. one dr said it's their problem to handle and vice a versa.
you don't want months wasted doing this if there is a real cancer inside of you.
sometimes they're not easily diagnosable. most of the time they are.
my dr said I would've had cancer by now since I've had the cysts on the ovary for a year. and not to worry that they're still there.
I was taught that a functional cyst should dissapear after a few monthly cycles go by.
that's when my red flag went up.
I'm going by my instincts.
I want the surgery. I've had a year to consider it and can't wait till menopause. I'm still having my periods regularly. but do have them more frequently on certain months. I never knew which is the real period.
certain ovarian cysts can cause bleeding in between periods or after sex.
there are signs of ovarian cancer and some don't even feel anything until they go for a routine and find out they have a mass.
so it's a tricky thing.
one is lucky if they know they're body well to feel even the slightest of symtoms.
if one is losing weight without any explanatation as to why, and there a few reasons for having unexplained weight loss, you don't have to have cancer to have the weight loss, and if you've gained weight quickly without there being a reason, if the stomach gets bloated and hard, if there's gas pains, or constipation or painful urination, or naueua and vomitting, this should be reported to your doctor.
and if they do an ultra sound and find cysts and just keep watching them, I say it's up to the patient to bring up to the doctor that you want them to do an exploratory.
I have adenomyosis besides chronic cysts and a few fibroids. I have cramps constantly like I'm going to get my period. that's uncomfortable. plus it interfers with my sexual life, and just my life in general.
it's scarey to always wonder if you have cancer sitting in there when the radiologist see's that something is suspicious looking.
then to have it go away the next month, and then to reapear the month after that.
my insurance company must have paid so much money for me all these yrs to have have ultra sounds, mri's ct scans, etc. it's ridiculous.
I feel it's time to take care of it now.
I didn't want to lose my natural estrogen. I thought the dr would just go in and biopsy the two cysts but she's suggesting an entire hysterectomy. the cervix, because of prior bad paps,. I had pre cancerous cells one time, so she said she's taking it out too. and the ovary because there's high risk in my family history.
both sisters diagnoses with breast cancer, one premenopausal, the other after, and one of the cervical carcinoma, dad died of colon cancer and my other brother had lymphoma. I also have a lymph node under my jaw that's been there for a yr. and has never been biopsied. it's sitting on the carotid artery and a general surgeon refused to touch it.
he took out another one on the opposite side where I didn't even know there was an enlarged node. I think he did a boo boo.
on that right side where the node is enlarged, I had a mass there back in 1997 and was biopsied. it was 4 x 6 cm large and took forever to be read by independent labs because my ent dr thought it looked like cancer. he was so sure it was.
so he had it retested. it tested as atypical follicular lymphoid hyperplasia.
atypical has the potential to turn into something malignant up the road, but I was never warned this.
so the drs that look at it now say they're not worried about it even though I tell them I've had a test come back atypical. as soon as they hear it wasn't cancer they just don't seem to be concerned.
mean while I'm dropping all this weight and looking anorexic.
one smart alec guy at work calls me "olive oil" you know, the skinny character from the cartoon "Popeye"?
how insulting. it hurts my feelings. and the drs can't find anything wrong.
so this is why I'm having the hysterectomy. while she's in there, she's doing an exploratory as well.
you never know.
she feels it's gastro related.
I want the darn cysts OUT! and checked! they've been there too long to be functional cysts and I'm not trusting my doctors judgment on this.
it's my body and I want my health back.
I don't have cancer and never ever had cancer and I don't ever want it. so I'm preventing it. now I won't have to worry about ovarian, or cervical cancer ever again.
I hope.
of course I'm frightened by having major abdominal surgery becasue there are risks. with any surgery there's risks.
you can have your doctor perform a hysteroscopy to test your cysts if it bothers you. especially if it doesn't go away. and if you're having symtoms, I urge you to find another doctor if this one doesn't give you his or her's total attention.
there's many other doctors out there in the sea.
they are working for us. not the other way around.
I hope you get your questions answered and that you get some sort of peace. but I think the only sort of peace you're going to get is if you have an exploratory.
discuss it with a doctor and do a heck of alot of research.
good luck, and you ask me anything you'd like anytime.
just be careful and don't take me word for work because I am not a doctor or a medical proffesional.
I just did my own research.
but you have to be careful of reading too much too. because you're mind can play tricks on you and you can begin to have symtoms just like the med students studying to become doctors. there's a name for this syndrome.
they actually feel the symtoms they study of the diseases.
see how stong the mind is?
or white coat hypertension? it's the mind. so be careful too.
I'm not saying personally it's all in your head, and you could have valid symtoms.
good luck
sincerely,
Linda S.

 
Old 10-10-2005, 10:54 PM   #4
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Re: Please Help - Need Info

Hi Linda,

Thanks so much for replying. I appreciate all the information and help. And it does help to hear your reasons and such, for having a hysterectomy.

I went to my gynocologist today. This was my regular yearly exam. I had my breast exam, my pap and a physical. He said that my bladder was dropping more. I have been leaking urine for a few years. It has not gotten worse lately. I do wear a panty liner, when going out, to catch the little that escapes. I do have pain where my ovaries are, but of course it could be IBS! Or diverticulosis/diverticulitis?! Also, when he was feeling of my uterus/vagina, it hurt just about everywhere in my low, low abdomen!!! :< It is still a little tender.

He sent me for my mammogram (I am 54) and we both agreed that I also should have a vaginal ultrasound. As luck would have it, my bowels were so full of gas, that they obscured my ovaries. But the tech did spend an awful lot of time and took bunches of pics of my insides. She did much more than my previous one of 1 yr. ago!!! It scared me. And that hurt more than the dr. feeling!!! It did not hurt hardly at all 1 yr. ago!!! I guess I will have to wait 5 - 7 days to find out if they saw anything bad!

I told him about my bloating and my gas. I also have nausea sometime, which I forgot to tell my gyno about! I also told him about my constipation, but I think that that is from one of my medicines. My family doctor has given me Lexapro and because of that I need Enulose to not be constipated! I do go to a gastroenterologist about 2 times per year. I have many digestive disorders, and take medicines for that too. These 2 doctors have both suggested it is the other ones problem to check me out. But, in my opinion, I have been checked out by both of them quite well.

My gynocologist, said, that we could wait and talk about it at my next appt., in a month. Of course, unless something bad is found on the vag.ultra. or pap.

The vag. ultrasound tech., said they could either try to do another one in a month, and give me gas-X and clean me out a little to try to see my ovaries. But the only other choice on that is an MRI, which is very expensive!!!!! I have a $5,000. deductible on my insurance!

What is an exploratory and a hysterescopy? And what is adenomyosis? When are you having your hysterectomy? You may have already said, but I forget really easy! I have seriously thought about having that operation (last year), but it scares me and now is not the time for me. If need be, I could have it in January of next year.

So now I wait and worry!!! I will try to keep myself busy (like I try to advise others) for the rest of the week!!

Talk back to me, please. It really helps. And tell me how long you have been researching? Just on the internet? Or at the library too? I know you cannot tell me the sites on this board, tho!

Take care and write back. Love, Wannabe

 
Old 10-21-2005, 04:15 PM   #5
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Re: Please Help - Need Info

Hi anyone/everyone,

Please answer if you have any knowledge in this area?!

I had a vaginal ultrasound on the above date and it has been more than a week. I am starting to get worried. No phone call and no card from the gyno dr. Only a good pap card in the mail.

Please tell me how long it took yall to find out how your vaginal ultrasound was. The results I mean. I guess I will call the dr. on Mon. afternoon, if I get nothing in the mail, sat. or mon. or if I get no phone call from the dr. Which I hope I do not get a call - cause with my dr. that means bad news, or at least not good news!!!!!

Thanks for any help yall can give me.

Wannabe

 
Old 10-21-2005, 04:56 PM   #6
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Re: Please Help - Need Info

When I had my first pelvic/transvaginal ultrasound, my follow up appointment wasn't for 10 days. When I called the doctor's office to try to get results prior, no one would tell me a thing, only that "the doctor needs to talk to you." Naturally, I envisioned the worst possible thing. Rather than continue to put myself through over a week of agony, I went and picked up a copy of the report myself, prior to seeing the doctor. This enabled me to have a clear understanding of the test results so I could ask intelligent questions when meeting with the doctor.

In my case, we opted to have another ultrasound in 3 weeks. If the cyst is still there, he plans to remove both ovaries. I'm almost looking forward to it.

Good luck to you!

 
Old 10-21-2005, 10:31 PM   #7
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Re: Please Help - Need Info

Hi Renee,

Do you think all drs. will let you pick up a copy of the report b4 the dr. appt.? I would like to do that, if mine would give it to me b4 he talks to me!

Can you tell me: how big is your cyst? How old are you? How would they remove your ovaries? Did you/do you have lower abdominal pain - on both sides?

My follow up appt. is not for 3 weeks. Originally 1 mo. from the day I first went. I cannot wait that long to find out what is going on!!! I know that they would have had time to get the results by now. Unless..... the dr. (gyno) sent them back to be read by another dr.?! Which would be bad newss!!!

Thanks for the information and if anyone else out there has any stories or advice, please do not hesistate to talk to me.

Take care. Wannabe

 
Old 10-22-2005, 06:16 PM   #8
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Re: Please Help - Need Info

Wannabe,

I had my ultrasound done at a hospital. I just went to their medical records department and asked for a copy of the report (I called first to make sure the report was ready. It took several days). After completing the privacy act permission slip, they gave me a copy. Some hospitals charge $1.00 per page; others don't. Remember, this is YOUR report. You are entitled to have a copy of it. If you had the test done at your doctor's office, they may not give you a copy until your doctor has reviewed and signed off on it. I've had luck sweet talking my doctor's nurse into expediting that for me. I've always been able to get report copies.

I have a few small cysts on my left ovary: One is a simple cyst, around 3.8 cms. One is a complex cyst within the ovary, around 1.7 cms. I also have some small cysts on my right ovary. Earlier in the year, I ended up in the ER due to pain from a larger cyst on my right ovary. I went to the ER because I thought it was appendicitis. That cyst apparently went away. I do have some pain and discomfort, including bloating; however, there doesn't seem to be any excess fluid in my abdomen. The pain, now, is tolerable. It's just annoying. My lower back also hurts at times. I never had trouble with this before, so I am attributing it to these cysts. Ironically, even though I know the bigger cysts are on the left side, I do have pain on both sides. Half the time I wonder if my discomfort (including LOTS of gas) is really due to something else. I probably need to see a gastroenterologist!

My Gyn really does not want to do surgery on me again (I have other medical issues). He performed a hysterectomy on me last year (best thing I ever had done!). We really debated on whether to take the ovaries at that time. However, I'm still relatively young (43) and cannot take hormone replacement for several reasons, one of which is I have an aneurysm. Therefore, we opted to keep the ovaries. Well, hindsight being what it is, I wish he had taken them. The reason he will take the ovaries out if the complex cyst is still there in 3 weeks is he really doesn't want to take any chances. Besides, it's getting real old dealing with the discomfort. Although, dealing with hot flashes doesn't sound like a picnic either. I think the real reason I would like them out is due to the mental anguish of waiting to see what changes occured with the cysts and the constant worrying if the cysts are really malignant. I'm guessing he will use the least invasive surgical procedure possible. However, I really have no idea.

Anyway, sorry this is so long. Keep in touch. I understand the frustration of having to wait and worry. Good luck and I hope everything turns out just fine for you. Renee

 
Old 10-22-2005, 09:12 PM   #9
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Re: Please Help - Need Info

Hi Renee,

Thanks for writing back. It helps me not to worry as much! I had my vag. ultrasound at a hospital outpatient imaging place. Did not have to go thru all the registering and bracelet stuff at the real hospital. Short and fast and right by my drs. office. But it is part of the hospital, so I guess if I get no results from the dr. on Monday, I will either go to or call the hospitals record dept. That is a good idea! Thanks.

I will talk back Mon. nite. Take care. Wannabe

 
Old 10-24-2005, 10:27 PM   #10
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Re: Please Help - Need Info

Hi,

I called my gyno dr. today. They just got the vag. Ultrasound results back today and will look at them tonite or in the am. Dr. is swamped because he took a few days off. I told them that I would like to come by tomorrow afternoon and pick up a copy of my vag.ultra. diagnosis. I think that if nothing shows up that is bad on it, they will let me have a copy. If it is bad, they will make me wait?! What do yall think?

In the meantime I worry. I may have to get it redone anyway, because of the gas blocking the views. Or some other, more expensive test! Perhaps I will have some results tomorrow. (which is really today).

Thanks for listening. Wannabe

 
Old 10-25-2005, 08:57 AM   #11
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Re: Please Help - Need Info

Hi Wannabe - I think you should be able to get a copy by tomorrow. Also, I honestly believe that if something had been found on the untrasound which was abnormal, the technician would have notified the doctor's office right away - which means that the ultrasound was normal (since they didn't notify your doctor right away but only sent the report.) However, as you said, it could be that you will need to have the test redone because of the gas blocking the area and they didn't bother to let you know that definitely. The office nurse would have looked at the report from the lab and surely would have flagged it so that the doctor would have noted it and called you if it had been abnormal, no matter how "swamped" he was. Good luck!

Last edited by mabent; 10-25-2005 at 09:00 AM.

 
Old 11-13-2005, 01:05 PM   #12
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Re: Please Help - Need Info

Hi everyone,

I have not come back for a while, because I just got over a mammogram upset. It all turned out well.

I did get my ultrasound results, and they said they were good, but could not see the area at all where both ovaries are. Too much gas or ? I will talk to the dr. and if he does not suggest another one, with the gas taken care of, I will ask for one at the beginning of 2006, for insurance reasons. I do still have tons of gas! And I have read that is a symptom of ovarian cancer. And, I have the pains where my ovaries are.

I will ask my gastro dr. to check it out next time I go to him, just to be sure, it is not my bowels, but I doubt that it is. Just check out manually I mean!

Any thoughts? Thanks.

Wananbe

 
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