Ovarian Cancer Community
Why do we stick around? Are we abnormal?
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This patient support community is for discussions relating to ovarian cancer, biopsy, chemotherapy, clinical trials, genetics, hysterectomy, immunotherapy, radiation therapy, screening, and staging.

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Why do we stick around? Are we abnormal?

This is a thread to allow all of you to share your thoughts. Tell us what you think. Those in the 99% club, tell us why you are here. Those in the 1% club, tell us if you think this is a good forum for all those who have/had ovarian cysts regardless of the end outcome.

For me - I know I've gained so much from this site and I hope that I can be of help to someone else who is beginning their journey. I know that I have learned so much here and that I am sharing that with those I know. I am educating women. I am telling women to be proactive. I am spreading the word on ovarian cancer. I care. I want a cure for ovarian cancer. Is this where I belong? I have found so many new friends here. They are important to me. I'd like to stay.
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16 Comments
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Avatar_n_tn
Hi,

I'm here and I'm still awating my final pathology on a borderline cyst.  This forum has been incredibly useful to me, firstly to know that I'm not the only one out there who can have a 25cm cyst and not really know anything is wrong, and then in answering my questions about borderline cases.  When my final pathology comes back if it remains borderline I am going to challenge my Doctor on the follow-up appointments (she says US every three months is uneccessary and that tumour markers in your blood should be fine) - I would not be able to do this confidenlty had it not been for information posted on this site.  I now feel like I'm equipped to deal with the outcome and know which questions to ask and how to challenge appropriately.

I think this site probably plays a big role in educating people about ovarian cancer and should be available to anyone who has information on the topic.  When I originally did my research on my symptoms (bloating) I never came anywhere near thinking it was Ovarian Cancer - so if people find this site and it gets them to a Doctor I think that is very important.

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Avatar_n_tn
I agree so much with both ladies.  To be honest, I knew nothing about ovarian cancer untill I had 2 US done 2 weeks ago and a rushed trip to my gyn where he mentioned the possibality of ovarian cancer.  I have my surgery next week to find out if it is ovarian cancer or not. My point in being here and asking questions is, that should I be diagnosed with ovca, I am better prepared for when I wake up from the op.  It better prepares me for the questions to ask. Had it not been for this board and the wonderful ladies here, I have no idea as to what mental state I would be in now - to be honest, like many others, I am scared.  It is something that really needs public awarness and I believe this board does that, and for doing so, it is a fantastic thing.  So thankyou to all who have responded to my questions, you have helped me more than words could ever say, and I am  incredably greatfull for that.
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Avatar_n_tn
Yes I like to think of myself as ABNORMAL, at least thats what is says on my blood counts weekly!! (caused by the Chemo)
I hope all of you Mothers have a wonderful Mothers Day!! I am going down to my Moms and cooking dinner for about 12 people. I am a month out of Chemo and have already been able to cuts pain meds down by more than half. I am feeling well and back out on the walking trail!!! I would very much like to bring the awareness of OC to everyone, and do my best to do this, it is a horrible Cancer and could be stopped earlier. I think Drs. need to be more educated  on this, I was misdiagnosed twice as are alot of women, but almost every disease is misdiagnosed at one time or another. The biggest thing for me was to go back and call those Drs. who misdiagnosed me and to tell them next time someone presents with my symptons is to condiser doing the proper tests for OC. So lets all spread the word!!!
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Avatar_n_tn
I am one of those in the 1% club. I have been a "lurker" for months. When I first came here I thought it strange that there were so many posts from women with "other" ovary problems, but the more I read the more I understood the usefulness of this forum for everyone. I hope this forum does not change. I feel that all women should be welcome here no matter which group she belongs to. We are all in this together no matter how our ovaries betray us. There is so much useful information that we can all use. I also feel that the women in the 99% club are being educated about the beast OVCA and can use this info for themselves and all other women that they come into contact with. They are also very strong women and can help us 1% 'ers fight the big fight.
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Avatar_n_tn
I am here because it was ordinary women, posting on this site, who gave me the information that I needed to make decisions and the all-important preparations for my surgery in 2004.  I decided to gratefully "repay" that "debt" by committing myself to one year of posting responses to help women who are beginning this process.   Then, along the way, I made some "friends" and I extended my year of assistance.  Now, until I know that each and every one of my new friends is safely through surgery and recovery, I will continue to stop by the site and post.

More specifically, as I mentioned on the other thread, the Cleveland Clinic (after building an impressive informational archive for the forum,) stepped down from answering questions.  So, my questions were answered instead by KarenC and Nuttynut.  Both these women had a pre-op diagnosis exactly like mine.  Both were having surgery about the time that I began my search for information.  As I repeat over and over again,  we were all found to be cancer-free, despite the fact that we all were being treated by gyn/oncologists, with that precaution because we had all the signs and symptoms of cancer (KarenC also had an elevated CA-125, which I did not have, by the way.)  It is like the luck of the draw.
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I've had the "honor" of being in both the 99% and 1% clubs.  When I was first diagnosed in 1978, there was obviously no access to the internet, we had very little information on ovca except that it was usually a death sentence.  I was fortunate in that I received wonderful care from the staff at Memorial SK but, until now, I've never had the opportunity to share information, thoughts and much more with women who have faced the same demon.  It was a very frightening place to be.  27 years later, I found myself looking at the possibility of being diagnosed a second time.  I'm grateful to the women who patiently read my posts and responded to them with the voices of experience, more importantly with compassion.  More than ever, I'm convinced that women need to be encouraged to find their voices when dealing with the symptoms, diagnoses and treatments of ovca.  I'm comfortable sharing my experiences with others.  Its an honor to be able to encourage other women facing surgery.  This is just a wonderful forum on many levels.  I don't think its abnormal to remain here at all.  We're women.  We're hard-wired to nurture, regardless of whether we have all our "plumbing" anymore or not.  
peace,
Anne
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Simply put, the best group of women, the most supportive, the least judgemental, and good information.  I'm so glad I found this group!!!
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I feel the same about this site and thanks for posting the question Vixen!  It works regardless of which club we end up in and I think the level of mutual respect and true friendship gives the Battalion its character!  I would actually be a bit nervous that experts would change things too much.  I think the patient to patient forum is part of the strength here, and there is no end of that strength.  We are hard-wired to nurture and that's why it works too.  Anything to educate on ovca, the beast, is a worthwhile thing!  And like Mickey, I have good friends here, never thought that possible in cyber space!  
Mary V (self-appointed scribe of the Batallion)
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Avatar_n_tn
I've thought about this for hours and to be very honest I came to the conclusion that the majority of us come to this site initially for exactly the same reasons. Our doctors advise us we have a mass of some sort and it could be ovca and we require surgery. It's during the run up period to surgery that we start to entertain every sort of worry imaginable expecially at 3am! and to find somewhere where there are ladies that have either gone through what you are experincing, or are currently doing so, helps no end.
I understand completely where the ladies doing battle with ovca are coming from and you all shine out with your courage but, I believe we have these experiences for a reason and this maybe a way of getting us together to support each other through our horrible times and show one another that there is light at the end of the tunnel. I really don't know where I would have been without this site and I feel a sense of duty to stay on and try and help any other cyster.  
I think it's important we don't loose anyone's knowledge or experinces as these are priceless and I hope as time goes on, there will be people who are "experts" in their field and when someone posts a question the relevant "experts" will jump straight in to answer.
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Avatar_n_tn
I personally feel this is a wonderful site for women to share their fears, joys, information and friendship without any risk of having personal information "get all over town". Because we are pretty much anonymous we are all fairly open describing our medical situations where it might not be appropriate face to face in our home towns, or perhaps we are not comfortable with or don't have close women relatives to help us through.

I appreciate all the women here sharing their stories candidly and I am so impressed with the strength of the women here, some of whom are battling cancer with all their might some of whom are just trying to help their "Cysters" fight that battle.  I think that not only has the medical information  here helped me, but  I find inspiration in such fine , caring and strong women. I would not have met any of you in any other way so I am very lucky to have been directed here.

Thank you all.
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Very well put!  Thank you.  I am in Maryland too, nice to meet you!!!
~Tascha
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Avatar_n_tn
Like everyone else, I came here because I had an unknown cyst.  I stick around because my mom has ovca.  I think this site is useful for women who are scared and awaiting diagnosis, and for family members who want to gather info.  Those in the 1% club suffer, but so do their loved ones and I think this is an appropriate place for family and friends to get support as well.
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Avatar_n_tn
I found this site out of the fear for the unknown. When I was told I had a mass that had the potential of being cancer,that is all I could think about! I wanted to be as educated as possible so I knew what I was up against. I thank God everyday for this site. Tascha's was the first to put me at ease with the 99% statistic, Thank you for that Tascha! I needed to know that I am not the only person out there that has been through this. Now I remain on this site just hoping that maybe my words will be able to give someone the comfort that I found here.

Tammy
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Avatar_n_tn
I came here because I "googled" I miss my Mom" and it brought.  Mom was diagnosed Nov 22 and passed into God's arms Dec 22, almost 5 months ago.  My life has been turned upside down.  I am.....trying to find myself again and trying to move past the tears and the shock of this happening so fast.....I hope I'm not upsetting anyone by posting here.  I belong no where I guess cuz Mom wasn't able to "beat" OC.  Still, I need some support and have lots of hope and prayers to offer up to all fighers here.  
Just my 2 cents worth.....
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Avatar_n_tn
I feel that I know so many of you because of this site. There are women on here that are kind, compassionate, knowledgable, and caring. There are women on here who share their stories, their diagnoses, their fears, concerns, and hopes. This site is a godsend for women who need relief from fears and pain. If not for this site, I would have been an emotional wreck from nerves and fear of the unknown. From here I got information about what was going on inside me, and was able to talk to women who had experienced the same thing, and could make the pros and cons real and specific.
Now, while I think the column needs to be renamed, since there are many of us who have ovarian problems but not necessarily ovca, but everyone is welcoming, no matter what type of ovarian problem someone has.
Don't ever change this site! I have officially joined the Battalion and become a cyster!
~Marianne
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Avatar_n_tn
This is my very first night and I love all of you!!  This site is truly a gift and a blessing!!
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