Ovarian Cancer Community
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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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This forum

Is not as it was. Too many posts are going unanswered. I have just had a look through and there are several. Was a time we would never leave one of the ladies hanging :( I miss the old days!

One of us always comes in here now and again maudling HA HA HA HA HA HA! Usually me or Mary LOL!

Simplystar I know we are never going to be on each others xmas list but you have been pretty great in here. Answering as much as you can. How is Lesley?

Anna X - who incidently is soooooooooooooooooo sad that she filled in any old thing in the profile so she could have a blue name - I wanted a blue nameeeeee NURRRRRRRRRRR !!!! : p
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20 Comments
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158061_tn?1202681926
just a statement of fact from my point of view, there are a number of question posted about which I know nothing at all.  This is an ovarian cancer forum, not uterine or fertility.  If one has no answers how can one answer the question.  
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167426_tn?1254089835
I also do not even attempt to answer those that I know nothing about.   Glad to see you Anna,  Leslee is having a really rough time with H&F syndrome. Thanks for asking. To help answer some of the questions, if I have time, I research the question and see if I can possibly find some answers.  This forum has helped me and in turn helped Leslee.  The BBB was great fun but this forum serves a wider purpose,  women come in here fearful. seeking help. but the answers must be helpful, if all we can do is direct them to seek a second opinion or relate our own experience, then it will serve its purpose.
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155056_tn?1333642288
Anna - you are right....but so many of the old regular posters are gone...including the group of us that used to post all the time....I try to answer as often as possible even if it is to just offer an ear...but, sometimes it's hard....probably after the summer when we are all in doors more, the postings will pick up.

Pam
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135691_tn?1271100723
Hi Anna..I feel the exact same way. I see so many posts going unanswered, but in the same sense, many of them aren't about Ovarian Cancer, which...well, we've been down that road before! I too, will usually only answer the questions about ovarian cancer because that's what I know. I'm not saying the other questions aren't important, but maybe there should be a forum for women's gyne issues. That way, they wouldn't all end up on here. I miss the old group, whose names I don't see very much of any more. I know though, that if I need some help, everyone is quick to respond. SimplyStar, I always am reading about Leslee's struggles and want you to know that although I don't know her, I think of her often.
Wishing everyone well...
Becky
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140437_tn?1215113342
Think im trying to stop time!
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155056_tn?1333642288
Remember the cyber parties!!!!!
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Avatar_f_tn
I noticed the same thing.  Not so much that posts were completely unanswered, as that the volume and variety of post responses is gone.  If I popped in even as much as once a day, it was so busy I couldn't catch up, and now it's easy.

I'm hoping it's that there's better doctoring out there, and less women are coming here scared and lacking the essentially basic info that we were able to fill in (considering we aren't doctors).  Also, having a doctor's forum changes the dynamics.  Last year, if I could have posted and gotten an answer to my one question that got me started pre-op, I probably wouldn't have ever joined in later.

Those cyber-parties were fun!  Weekends used to be the busy posting time, but now it's the slooow time.

On the sadder, more frustrating side, there's many more women here now dealing with C itself, and not simply surgeries for cysts.  I mostly don't post anything on those posts, since I don't know anything and wouldn't want to misspeak, even on the emotions of it, I don't know the experience.  Makes it almost into two simultaneous intertwining forums.
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Hey there ladies.....so nice to hear familiar voices again!  I check this site at least once, and usually twice, each day...I speak up if I think I can help....that's not always the case, however.
I miss the "old group" too........let's see if we can get Raven to host a Saturday night cyber-party one of these next week-ends.....I bet she would.....I will contact her.
Peace.
dian
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176401_tn?1339372907
I agree.  I posted a couple of weeks ago just asking others opinions  about what they'd do (I am BRCA positive) and got 0 responses.  My post was very much ovarian cancer related.
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Avatar_f_tn
Unfortunately with this disease 'the old group' will never remain static. Some will go into remission, get on with their lives while they can, and others, sadly are no longer with us. These are the facts of this type of cancer. While I hope that I can offer some support and perhaps some advice/ideas on somethings that I have some experience with, like some of the other girls, I won't reply to posts re queries that I know nothing about, so I think that is probably the reason why some of these do go unanswered. Also, some of the questions could be repetative, as they could have been asked on here before, and perhaps going back over the old pages could possibly save some time from re-posting these queries. I find this site very informative, and I appreciate the friendship shown to me from the people (both boys and girls) here. :-)
Wishing you all the best with dealing with this lousy disease... warm hugs to all...Helen...
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Well since you asked, here is what I have to say about it:
When I first joined this forum, I was thrilled to read everyone
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I was reading all these posts and I just wanted to say that Thank God I found this forum. I was miserable, searching for answers, and this forum has been incredibly empowering for me, in that other women having the same symptoms as me, have been able to say, yes, I too had those symptoms, here is what I did, or here is what they found, or get a 2nd opinion, etc.  I have not been diagnosed with Ovarian Cancer and so therefore, I do not respond to those that are asking specific questions about their cancer; however, with the risk of offending anyone, I keep everyone on this forum in my prayers each day and I want to thank  you for all the posts and support that I have received.  Take care
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Avatar_n_tn
I second gatorfrog--thank God I found this forum---hearing what other women have experienced has helped me a great deal.  I don't know if I have oc or not yet, but having the support from others who do or have dealt with the uncertaintly that comes along with cysts and other problems has kept me from completely freaking out.  Thanks to everyone who shares their experiences via this forum and I too am keeping all in my prayers.
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You know....I too had ovarian cancer.....I have read and posted on this site since 2005......every so often we have someone who finds us offensive, insensitive or just plain idiots....once again we are in that position.....we cannot be all things to all people.....we do the best we can.....some of us have bad days.....some bad months.....sometimes we just are too tired to post or choose to move in a direction where cancer can be ignored.....I am sorry we offend some but I do believe we do great things in support of those who come here for community.....we answer questions when we are knowledgable.....we reach out regularly to comfort and advise when we are comfortable doing so....it is sad when we don't connect but it is also sad when we are inflicted with venemous attacks.  This site is visited by and supported regularly by good people.....it is a shame when someone is unable to see the goodness and compassion here.....I feel sad for that  person and I hope things look better in the very near future.
Peace.
dian
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167426_tn?1254089835
When I first found this forum I was so devastated by the dx of my daughters cancer, as a nurse and mother my family has always looked to me for the answers. I had never had any close family member with cancer, and when I was learning my profession, 50+ years ago, a dx of cancer was a death warrant. I had no answers for her. To say I felt and still feel guilty about my lack of knowledge is the truth.  To have learned through this forum and my research the "silent" symptoms  of OVCA, has caused me great distress, Leslee had all of those for 4 months prior to finally getting a doctor to recognize and order the correct tests,  I let her down, because I did not know.  If women coming on this forum can get this knowledge early enough then there is always hope.  Women do have multiple problems with the reproduction organs and most will put it off because other family matters are more important.  If some of the posts seem repetitive, it is because new posters are coming here all the time and do not have access to the advice given prior to their requests.  I certainly appriciate all the time given so freely by those that have been there and share their knowledge.  Maybe if we just put in a simple welcome into an empty post, a suggestion as to where the poster might find the answer, if we do not know. Encourage them to do research on the problem.  I credit this forum and your advice for making Leslee's journey more understandable. A doctor does not take the time to explain all the pit falls of chemo, surgery, aides to make the body feel better,  that is what I have gained here.  Bless you all.
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I came onto this site because I had some questionable tests results and I was terrified.  I posted some questions and read the posts of others.  I have been forever changed by being here.  I was given good suggestions to my questions, and I learned a great deal by reading others' posts.  I don't respond to many because I don't have the experience or knowledge, but I still read the posts almost daily.  Even though I don't know anyone personally, I feel so much emotion for the people here.  I truly keep them in my prayers.  I will always be grateful to the brave people on this site.
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140437_tn?1215113342
I don't ever recall anyone loosing patience due to repeating themselves - never a single incident in fact! Actually when I first came on here there was no way on Earth I was going to trawl the archives lol!

Anna X
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Avatar_n_tn
I haven't been around as long as many of the posters but this sight helped me trmendously when I first found out I had a cyst and needed surgery.  I am lucky and do not have cancer but I keep popping in because I feel like I can maybe help or reassure someone who is in a similar position. So I don't post much because I don't know much but like to stick around just in case.  Incidently I have found this to be one of the best support forums.  I have been searching for help related to endometrial ablation and haven't found any forum as easy to follow or that has as much participation.  PS I have not read every thread but I've always found responses to be kind, truthful and heartfelt.....
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