What the next step???

[chustler]

I started feeling a gnawing feeling in my lower right side sometime this past summer.I soon started to realize that I was feeling this discomfort more often and sometimes get a crampy feeling.I didn't pay too much attention to it, but then soon started thinking about other things that my body has been throwing at me.Back in April,2002 I was feeling fine and worked all day, but in the evening felt a general "not feeling well".  It increased over the next hour and I got diarrhea.Got a general lightheadedness and before I knew it, I had passed out (first time ever).My family called 911, went the hospital, stayed for about 5-6 hours til I was conscious and aware and was sent home with a probable bacterial infection?? Rested & recovered over the next few days and let it pass without more thought.Then in early August, got a terrible wave of fatigue every day for about a week.Could not stay awake.Slept alot,would wake for an hour and back to bed. Once again, this passed and I didn't think anything of it. Then the gnawing, cramping tweaks started in my lower right abdomen. I now have intense back pain and I am now worried... My grandmother died of ovarian cancer, my sister has breast cancer (and currently being tested for the BRCA1 or 2 gene). I have seen two doctors and both say that I do not have ovarian cancer. I had an ultrasound that shows a 'very small' cyst on my right ovary but that is all. A CA125 test has come back normal and I'm not sure what to do next. Should I be rest assured that I do not have ovarian cancer? What's next?

[chustler]

Thanks for your comments. I know that I am not sickly, but I do know that 'something' is going on. Minor, I hope. I am going to make another appointment this week and I am going to ask for further testing, be it a CT Scan or an MRI, but that is my next step. Thanks for your well wishes and take care.  I'll keep you posted.  For shana or any other women that would like to discuss this further, please keep in touch.  My e-mail is ***@****.  Thanks for caring.

[spicer]

You took the words right out of my mouth.  I too, want to ask - "So....exactly what DOES ovarian cancer 'sound' like?"  There's a very good chance you are just fine, but you need to know for sure that you are.  You have ovarian cancer in your family, and that alone should be raising a red flag to your doctors that you are high risk and should be screened not only on a regular basis but at an earlier age.  Ultrasounds are very helpful and are what is usually used, but as we all sadly read, sometimes it isn't enough.  Ultrasound is fine for just regular yearly screening if you're feeling fine and are having no problems.  But the problems you're having demand more, obviously.  You should be asking for a CT scan as that will show for sure exactly what is going on.  The fact that you've not only been having problems for awhile, but they aren't going away, proves there is something wrong.  And it really makes me angry when I think how long you've been feling like this and nobody has even made an attempt to help you to feel better.  Just because they don't see anything means you just keep on suffering?  Unbelievable.  I'll tell you what I tell everyone - You have to take responsibility for your own body, because you're the only one who will.  You demand a CT scan.  Like I said earlier, doctors are a dime a dozen; if one won't listen to you, there's another who will.  And you keep asking, and you keep having tests, until you get a diagnosis.  CT scans don't hurt.  MRI's don't hurt.  And one or the other should be what you want now.  And if you can't get any of your present doctors to give you these tests, then you get up and leave and you go find yourself a new doctor.  And don't think twice about offending them.  This is your life we're talking about, not how badly they may feel at losing a patient.  
Pleae let us know how you are and what happens, ok?  You take care and keep us posted......

[chustler]

Hi Shana: Thanks for your comments. Earlier this year I didn't really think about all the things that my body has been throwing me. I did read one of the books you mentioned, and that is when I realized that maybe I should be concerned because I have almost all of symptoms that she went through for a year. The book and the education from it is what sent me to the doctor to try to piece it all together. Even with all the publicity that this star has received regarding this illness (and her husband stills promotes awareness today), I am still amazed at how little attention ovarian cancer gets. Everything I have read points to specific symptoms and yet what I hear is "it doesn't sound like ovarian cancer". I am so confused... I pray that I don't have this illness and I am trying everything I can to get some answers. My body is definitely trying to tell me something. I have been extremely healthy for over the past 20 years. I take no medications, no prescriptions, no illnesses, don't smoke, and I know that I am not making these symptoms up. My health has been A1 and I think that is what concerns me... now I just have to get somebody to listen. To the medical profession out there....what does ovarian cancer sound like. What are you looking for before the proper tests can be requested. Everything points to nothing until it is too late (from Stage 1 - 4). I intend to keep looking for answers and I hope that all is well. I will keep you posted as I truly believe that we need to communicate to one another to try to fight this 'silent' disease. Thanks for listening and take care.

[spicer]

I'm reading these postings here and I'm feeling very disturbed by them.  There are too many cases of women - celebrities included - who had been told they didn't have something, only to find out later on that they had exactly what they feared all along - but by the time it was found, it was too late.  And what do the doctors say?  "Oops, sorry"?  There are two celebrities who come to mind immediately and who both wrote books to help the rest of us.  It would benefit every woman out there to grab those books and READ THEM AGAIN.  One had mid-cycle bleeding and bleeding after sex.  For 3 years she was told by 8 different doctors that it was nothing.  Since when does mid-cycle bleeding mean 'nothing'?  When they finally did a uterine biopsy on her - something that should have been done at the very first visit 3 years prior - she was found to have uterine cancer.  She was 42.  The other one - which we all know without even saying her name - was shuffled from one doctor to another, had test after test done, was repeatedly told she was fine, there was nothing wrong, and to stop worrying.  She even told one doctor she was afraid it was cancer.  He assured her it was not.  By the time they did a CT scan on her a year later, she had advanced ovarian cancer that had spread.  She was 40 at the time and died not long after.  Both women had intense leg pain.  One had intense unexplained fatigue for days at a time.  They both had pelvic cramping and a terrible sense of being unwell.  And every test they had done showed nothing wrong.  You don't have bleeding every day and after sex when it's 'nothing'.  You don't have pelvic cramping and bloating that doesn't go away when it's 'nothing'.  It is unbelievable to me that you can have these symptoms, even have family members who have died from it so it's part of your family history, and they will still say 'you're too young, it's nothing, go home and don't worry'.  Doctor's make mistakes.  Your body doesn't.  You can have half a dozen doctor's telling you you're fine, but if your body is telling you your're not, then you're not.  All of you here who have written in about bleeding, leg pain, pelvic cramps, etc, please keep on until you get an answer.  Do not let your doctor 'blow you off' as one of you put it.  Doctor's are a dime a dozen - find one that thinks as much of your health as you do.  Then fight to keep it any way you can.  And you demand every test you need until you get a diagnosis.  And do yourselves a favor before you do anything else - treat yourself to a couple of books, if not from a book store, then your library.  I personally think both of these women are life-savers nad have done more for women's health than a whole damn hospital full of doctor's.  Read them and listen to them, for one reason only - they've been there.  All of you take care and keep us posted.

[chustler]

Thanks to kniddle and rickyg for your comments. As you say the doctors are human, but how do we get them to listen.  My doctor says that she doesn't have any answers, and she doesn't think I have anything to worry about. Should I just request a CT Scan or MRI...don't think it's that simple and I think it is a long wait here in Ontario,Canada (but I could question this at my next visit??)  A question for kniddle...was it your back pain that made you pursue medical attention. Was it on your lower right back? Was it an ovarian cyst?  My back pain is very intense (my most nagging symptom at the moment) and I get the front abdominal discomfort several times a week. Did you have an front pelvic (abdominal) ultrasound or just the MRI? I didn't now that a cyst could cause back pain, I'm learning more as I go along. I am not terribly ill but I am uncomforable and I think that is why I am trying to figure out what to do next. I could let it pass and just see what happens as time goes on, but like 'kniddle', I'm afraid that everything points to all being okay, and then you find out that you are stage 1+. I am hoping that all goes well and thanks rickyg - I will keep you posted as I believe we need to educate each other.  Take care.

[rickyg]

I believe I've read on some of these posts that the Ca125 test shouldn't be used as a 'test' for ovarian cancer, that it's more reliable as a means of checking for a recurrence in patients who have already had it.
I personally would insist on an CT scan or an MRI to find out what's going on.  They are both simple tests, they don't hurt, and your doctor's can then see for sure what's going on with you.  It could simply be a cyst, which indeed would cause you bad back pain, but why sit and worry?  Most cysts have to be removed anyway, if they don't go away on their own.  Personally, I'm surprised the doctor's aren't a little more concerned given your family history.  Doctor's are human and they make mistakes too, but we're the ones who have to speak up and ask for whatever it is we think needs to be done to put our minds at ease.  If you're concerned enough to question them, then you need to go one step further and have one of the above tests done to find out for sure what it is you have.  
Please keep us posted...

[kniddle]

I read your comment and concerns... I must tell you but you sounded just like me... I found a marble size cyst (it showed on my MRI I had for a bad back)...  I went to my GYN who told me cysts like that are 95% water and when my CA125 cancer blood test came back Negative, she said it's nothing to worry about.  We decided to "wait and see"... after 3 months it was golf ball size and a month later, tennis ball size.... they said it was still a water-filled cyst as the CA 125 test was again Negative.  We decided to have the cyst removed and when I woke up the Dr told me it was Cancerous (Stage 1+) and had given me a Hysterectemy (sic)... I was devastated... they then said the CA125 test wasn't 100% thing and "most" cysts are benign and water-filled.  I am into my 4th of 6 Chemos and hoping for the best.  Keep an eye on yours and if it grows I suggest you have it removed.