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too much internet research??? has me panicked too much internet research??? has me panicked

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  #1  
Unread 07-05-2004, 07:50 PM
too much internet research??? has me panicked

Hi,
My first posting. Glad to have found this forum - discovered it this morning and am happy to have a place to share/vent.
2 years ago had 7 CM benign ovarian cyst (took ovary and fallopian tube as well) removed laproscopically - discovered it was caused by stage 4 endometriosis. At the time of surgery a 1 CM cyst was starting on other ovary. Well now it is 8CM, causing pain and hystorectomy recommended. My gyn/onocologist said to schedule at my own convenience (within reason) as long as my CA 125 came back ok . Well it did not ...it was elevated. In January it was 25 , it is now 90. So I am scheduled for total hysterectomy in "next available slot" July 16th.
So of course I have been searching the internet, knowing that elevated levels can be caused by other things including endometriosis....but how elevated? One website said "In the patient who is being evaluated for a pelvic mass, a CA 125 level greater than 65 is associated with malignancy in approximately 90% of cases. " So of course I am in panic mode....so would love to hear that some contrary stats and/or experiences.
will stick to this website for now......

Thanks!
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  #2  
Unread 07-05-2004, 08:33 PM
Which Website Was That?

I've never encountered that phrase or statistic before. CA125 can elevate for a number of reasons beyond endometriosis, such as infection. Has your doctor done a transvaginal ultrasound, and what does that show? Have you also had a CT scan to look at the ovary and surrounding areas? The only way to be sure that something is ovarian cancer is to do the surgery. I'm glad you're having a gyn/onc do the surgery, as these are the best when there's a possibility of cancer. In the meantime, my advice is: never waste a good panic. Check out pre-op and post-op so you get the hysterectomy questions answered and come back to us as well.
  #3  
Unread 07-05-2004, 09:42 PM
hug

I don't have any great advice for you but I wanted to send a your way to help you through this.

The internet is a great tool but my own doctor made me promise to stay off of it and call him instead of doing my own research and self diagnosis....he was right....I read things that didn't apply to me and got myself all freaked out. If I had just called him and asked him my questions then I wouldn't have spent so many sleepless nights.

Call your doctor, that's what they are there for....ask them directly what your elevated CA125 means or could mean.

Good luck with your surgery...I pray it will all turn out 100%.

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  #4  
Unread 07-06-2004, 07:57 AM
too much internet research??? has me panicked

Those statistics are notoriously unreliable -often basedon terribly small sample sizes. In pre-menopausal women, CA-125 is especially unreliable, and many women with endometriosis have elevated ca-125 levels because of the endo. In fact, some docs use ca-125 levels to "stage" the severity of endo.

However, your gyn onc is doing exactly the right thing by being cautious. So give yourself a big for taking care of yourself and getting to a gyn onc.

Dorrie
  #5  
Unread 07-08-2004, 01:31 AM
too much internet research??? has me panicked

Hi,

I just hit my one year post op anniversary for endometrial cancer. I probably did 200 hours of research before my surgery. I was pretty up on things.

What helped me a lot was getting a second opinion from a second gyn/onc and then comparing what the two docs said and why.

I think that it is good to be informed but not good to panic. You need your good energy for strength. If you have a good gyn/onc ask that doc your questions. You can also call the American Cancer Society and they will research questions for you for free and take the time to chat about it.

If you are getting overwhelmed, take a walk, write it out in a journal, get some support or just sit with the problem and do some deep breathing. I realized after my surgery, when I was all relieved, that a lot of my trying to analyze everything before the surgery was my way of avoiding the hard feelings that were coming up about having cancer. Give yourself the time that you need to do what you need to do and do the deep breathing---your body needs some nurturing during this time. It will work out.

TAH BSO 7-1-2003
  #6  
Unread 07-08-2004, 10:02 AM
too much internet research??? has me panicked

Hi, it is very easy to work oneself into a panic looking at some of the statistics, etc. on the internet or elsewhere. Please keep in mind that we are each a wonderfully made individual and not a statistic and moreover the latter can often be very misleading. You seem to be in very good medical hands and please don't hesitate to ask your physicians any questions/concerns you have. If you have any doubts there is nothing wrong with seeking a second or even third opinion. I also am very glad you are seeing a gyn/onc who are the specialists in this area. Please keep us updated.
s and blessings, peggiesue
  #7  
Unread 07-08-2004, 03:20 PM
Easy on the research!

Just my humble opinion -- if you're the type of person who is inclined to become obsessed in general, a little Internet research goes a long way. I'm a journalist and pretty much an information junkie, and I spent most of the past month in hysterics about the possibility of melanoma because of a suspicious mole I found on my hip. It looked like a melanoma, even to the doctor, but it wasn't -- and I had worked myself and my entire family into a frenzy.

Here's my entirely unsolicited advice: Be particular about the sites you visit -- for example, the Mayo Clinic Web site is trustworthy, as are sites like WebMD. And a site like HysterSisters is great because it's non-alarmist in nature, and it's also regulated. Not to be at all unkind, but some Web sites seem to be filled with people who overdramatize conditions for one reason or another. I would go to bulletin boards and read things like, "I had a pinhead-size melanoma removed four years ago and now it's spread to my brain and I'm dying." Well -- that's not the usual course of the disease ... not to say the poor person is lying, but chances are there are variables we as readers are not aware of.

Don't make yourself upset, scared, sick, or all three. Balance your research with common sense, and with living your real life.

Take care.
  #8  
Unread 07-08-2004, 04:36 PM
too much internet research??? has me panicked

As an ovarian cancer survivor, my best advice to you is to STAY OFF THE INTERNET!!

Unfortunately I did the same thing and drove myself crazy. The internet can be wonderful and it can also be dreadful. I actually had myself six feet under before my surgery even took place.

Please do not believe everything that you read. We are not statistics, we are individuals who, with the correct doctor/surgeon, and the best follow up care, will beat this beast!!

Rosalie
  #9  
Unread 07-08-2004, 05:21 PM
too much internet research??? has me panicked

I had my CA 125 raise up to 66 and had surgery the next week. I was the Dr on Friday and surgery was Monday. He felt personally that I did not have cancer but explained that it was nothing he liked to wait for. I ended up just fine with no cancer. All the rest of the items were the cause of the increase in the CA 125.

So, get the surgery done so you too can relax. I was not going to sleep well until it was over anyway, so getting it done right away was the best answer for me.

Good luck and my thougths will be with you.

Tracey
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