In response to Tybear's question about this forum
I haven't posted since I returned home from my surgery on April 10th, but I do read the postings almost daily. My cyst resolved and the majority of my pain was from severe endometriosis. My uterus is dotted with fibroids and I believe I have recurring functional cysts. (I think that's what they're called). I'm still recovering from my surgery and I still suffer from moderate hip/groin pain which often shoots down my leg. I'm not convinced the hip pain is completely from the endometriosis and sometimes worry that something was missed.
The reason I'm posting now is that I feel it's necessary to tell the women on this site that they helped me through a VERY scary time...and for that, I am forever grateful. I truly feared ovarian cancer a couple of months ago.
I stopped posting comments because I felt guilty since this is a site for ovarian cancer and I now know I don't have it. I continue to read the postings, however, because I continue to gain strength, assurance, and knowledge from them. I know so much more about ovarian cancer than I did three months ago. I wish there were more people (woman) rallying for ovarian cancer research and treatment - much like what is out there for breast cancer.
As one of the 1% club, I have a few thoughts on this. I see the fear women (and men who post about their wives) have when they come here thinking the worst. OvCa is a scary thought. They ask questions, but get more than just answers. They get a caring group of women genuinely interested in their well-being. They can go into surgery with (hopefully) a little less fear, but a much larger cheering section. I am thankful that most make it to the 99% club, but for those that do not, then it's my hope that by reading our posts, they will understand that they CAN overcome it, and they CAN make it through chemo. They will see that although it isn't peachy, it is also not the end of the world, either. If anything, it makes you a stronger person. I, for one, would miss those ladies of the "Benign Battalion" because they are our support as much as our fellow cancer survivors.
Point number two is that by having so many people as regulars here, cancer or not, its that many more who are familiar with the disease, and can lend a voice to the fight. We need to spread awareness about this to everyone we know...shout it from the rooftops if we must...but the most effective way to get the message out is by folks spreading their knowledge. If we can convince women who may be at risk to go ahead and get that CT or US, and be proactive, the more likely it will be caught at an earlier stage. And the more voices we have, the better chance we have of creating awareness to the public as a whole that will in turn, create more opportunities to get funding for OvCa research. The day I walk into a store and see teal ribbons along side the pink ones, or buy a container of yogurt with a teal lid to raise money for this fight is the day I shout out, "Hallelujah!"
I hope all that makes sense. It's really late and I am having trouble making my thoughts come out coherently. Insomnia is really for the birds!
I just posted on the origional May 12th thread for this interesting question. I had my surgery in September of 2000. When I found this site a year and a half ago or so, I felt like I'd come home. Finally had a safe place to fall.
See what you think if you read my post. It is long and I was struggling with just what I wanted to say...but, the impact of this diagnosis is so huge that for me to find this place allowed me to totally move on in all areas of my life since I had this anchor here for all of the emotions that are now tucked away in a pocket inside my heart. This is where I can share my story. This is my oasis.
I hope you decide to stick around. I find your posts inspiring.
Hwy Laura and Bev,
Good points and I cannot agree more fully! I have asked the same questions, why is this Forum called OVCA when, as our darling Tascha reminds us, 99% of us have the relief of being of the 99% club? As I see it, we are all 1% pre-op. We all know that "there before the grace of God go I"! Our beloved Cysters of the much esteemed 1% club could just go off and find a site that caters specifically to ovca, but instead they stay and help every women who comes here prepare. Bev and Laura sum it up rather well, we all learned how to deal with the beast if we had to, at least the basics! At the same time our 1% club help each other, and as the poster girl of the 99% club, we leave those posts alone out of respect but we do read them, and learn. Should there be two separate forums for the clubs? I, for one, hope not! Until there is a conclusive pre=surgery test, we are all in the same boat initially! We all share the same fears and those who have to face them teach us, by their very presence, that the beast can be vanquished, even if only for a few years, it can be battled and vanquished. Ask Shen! She is our 20 year vet and is doing battle again~! We are confident she will beat it and if she gets the willies, we will all be here for her, 1% and 99% together, the Batallion. Somehow I understand the need for those diagnosed with ovca to have their own site, I get that. But we all would lose so much if there was segregation.
I agree the site may be mis-named and therefore disappointing to those with ovca who think only the 1% are here. I also am concerned that there are pre-op Cysters who blaze on by because they think it is only diagnosed ovca 1%ers posting. Either way, careful thought as to what it should be called should be practiced. What do you think Cysters? MV
P.S. Let's do the "Why do we stick around, are we abnormal" on a separate thread. If you are interested in that, start the thread. MV
Thank you Gail for your beautifully written post. I was beginning to feel like I do not belong here anymore, but your words have made me feel welcome again.I feel very fortunate to be okay, to have had my cyst shrink on its own at this point. But when I first found this site, I was painfully afraid of what might come to be, and I did not know where to turn for information and support. I considered myself blessed when I found all of the amazing women on this site, so much so that I even told my gyn about you guys!Through this forum, friendships have blossomed, ones that I cherish and do not want to give up.Thank you all for helping me when my fear was overwhelming , and allowing me to feel comforted and nurtured.
I'm glad someone finally responded to you...when did this forum switch to patient to patient? I'm glad it did switch, it's turned into something of a support group. I was responded to by Tascha within minutes of my first post (you're my first Tascha!) and I've noticed you're quick to respond as well. I actually wondered at first if you, Tascha, RavenLady and a couple others were "board monitors" or something like that. I wasn't sure how this board worked. Now I realize that you all are just kind women helping other women get through scary times in their lives.
I too got so much comfort from this site in the weeks leading up to my surgery and afterwards from both the women here who did not have ovca and those that did! I was so consumed with fear initially, but the more I read, the calmer I became. I know that this is not the same for everyone, but for me, I felt much better from reading real people retelling their very real stories. (A reminder that I was dx with ovca whilst in hospital from the frozen section biopsy and was just waiting for final pathology and staging. The final path came back all clear a week later). When the surgeon came to tell me that my cyst was malignant, I was very calm. I felt positive it was early stage, as their was no metastisis anywhere else, and from reading other's posts beforehand, I was confident of beating the disease. I know that it ended up that I didn't in fact have to battle this disease, and I can't pretend to know how I would have continued to handle things if it had been ovca. But I can say with assurity, that all the people on this site gave me courage, confidence, knowledge and most importantly, friendship which I will treasure for always. I'm so thankful to everyone, and hope that I too can help to allieviate someone else's fears as they go down the same road we all have tread (with differing end results). Should those of us who have been given the all clear now move on? I know that there have been times that I have asked myself that same question. What do all the ladies who are fighting this terrible disease think?
Your post gave me goose bumps! Well said, you "one percenters" are my heroes! I was a mess when I found this site, you women (ALL of you) held my hand and went through the lousy "watch and wait" phase with me. When my cyst resolved I did back off posting...but I read just about every single day. I want to know how you all are making out and if I can possibly help someone with my experience I would love to "pay it forward". I adore the women here. Can you imagine coming here scared out of your mind, posting something, and not receiving any response? Every woman that enters this site should consider herself lucky to have landed in this "cysterhood" that has morphed into a little loving community. I myself was totally ignorant to OVCA, not anymore! I've already educated my two sisters and mother on this disease that doesn't get nearly enough attention. I've been enlightened by this site.
You posted,"Can you imagine coming here scared out of your mind, posting something, and not receiving any response?"
That IS exactly what happened to me.
Truly. The Cleveland Clinic staff had stopped answering questions the very week that I posted, but that fact was not made clear in the notes at the top of the page. I went for over one week with no response, until I left a rather pleading post for 'anyone' to respond. With that post, KarenC and Nuttynut responded by sharing their experiences. We all had essentially the same diagnoses, and all were being treated by gyn oncologists as there was such a great chance of having malignancies. They were slightly ahead of me in the process, so I knew step for step what to expect from pre-ops to testing to surgery to recovery room to overnight stay at the hospital. In fact, I knew so much about what step came next that the nurses asked me how I knew.
So, as I explained on the other thread, I have repaid my debt of gratitude by posting here. And in those earlier days, I was often the only responder of many questions. You might note that even now there are questions posted on the site for which no one can give advice, and I will come along and try to leave some response if I can. I did not, still do not, want anyone else to be left hanging, and if I can give some type of rational answer then I will post it.
I found this site to be the best thing that happened to me since my diagnosis of my cyst and surgery.
I found this site on my quest for information about ovarian cancer. I was convinced I had it. The gyn/onc that I was referred to was very clinical and serious. He gave me the impression that my situation was very serious and not to delay with surgery. He discussed all the chemo treatment and surgery options. I sat there petrified grasping about 1/10 of what he was saying. My husband was asking questions like what % chance do you think it is cancer. The doc said 25%. I was post menopause, I had a thickened uterine wall. Everything I was reading on the net suggested it. If I was ever in a panicked state, this was it. And then this site fell in front of me. A haven where I found comfort and answers and support. I read about the 99% who offered me hope and I read about the 1% who offered me courage and I knew whatever the outcome, these wonderful women had come to my rescue and I would be able to deal. I, too, don't post very much but read everyday so that I may give back in the form of prayers to all.
I don't know if there is anything I can say that hasn't already been said. When I was told my bilateral cysts/masses might be malignant along with an elevated ca 125, I was absolutely lost. I had nowhere to turn, no one to talk to. My husband just kept saying "it will be O.K." well, maybe it wouldn't. The wonderful ladies here helped me to realize a couple things. First I could not change the outcome of the surgery. Next,whatever it was, I could handle it. I did not have the emotional strength I needed to have before I came here. When I went to surgery, I was fairly calm, not the scared person I had been. Whatever the outcome I would be able to handle it, I had to, I have 3 samll boys that need me. I am forever grateful to all of the "friends" who helped me get through this time. Whether the results are 1% or 99% I would like to think we can all help each other. Thnks, Shari
Well, ladies, I have been thinking about this all day long. I know I am primarily the one who shouts 99%. I don't say it because I don't want women to ignore their symptoms. And I don't say it lightly either. I do repeat if often because I am trying to help calm nerves and give support. Prior to my dx, I was told that it most likely was ovca by a rather careless raiodlogist and fear took hold. I found comfort and support here. I also gained knowledge. I do not want anyone to feel the fear I felt. I want them to know that yes, get medical attention, yes be proactive in your health care and don't ignore your symptoms and yes, 99% of ovarian cysts are benign. I am pained when one of my cysters has been dx with ovca. I cannot even begin to fathom what they are going through with chemo and all that goes with it. It breaks my heart. What I can do is offer my support and my prayers for our ladies that are taking this awful journey. Godspeed to all
I just want to add my point to this as well, I started to be ill last November and from my symptoms the doc told me in no uncertain terms that they were looking for something serious, cancer being one of them and when he found a mass in my pelvis during an exam the day before xmas my worst fears seemed like they were coming true, unfortunatley because it was the holidays I couldn't get an US until January and when I did and they found a mass on both ovaries and my doc said the whole of my pelvic region felt matted together. I was going to require surgery asap and there was the possibility of ovca, it was at this point I found this site and became a silent reader up until my surgery date and I'm so glad I did.
I found the ladies in the 99% club posting to other ladies gave me the comfort and reassurance to know that chances are everything would be ok and this helped me like no one would ever know, but I also want to say that Dian, Gail, Rebel Spirit and many others fighting the beast gave me the confidence through their postings, to realise that if my results turned out to be something bad, it wasn't the end of the world and it could be fought against. So for that I thank each and everyone one of you.
We are all 100%!!
I know the change from clinic-based answers to patient-to-patient happened in November 2004. I think I recall the change taking place shortly before Thanksgiving. In fact, I might have posted my first question the week of Thanksgiving, as it seems that I thought an answer to my question was being delayed due to the holidays.
Honestly, I think the forum works better this way, as a patient-to-patent forum, than it did previously. While the staff of the Cleveland Clinic presented excellent, brief "technical" information, it is often the "not-quite-so-technical" details that the actual patients can provide that make the difference. For example, KarenC warned me in advance that my post-op instructions would require little or no use of stairs; I live alone, in a three story house. You can imagine how valuable this "warning" was to me in planning for my recovery.
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