Ovarian Cancer Community
My thoughts
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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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My thoughts

I am a little upset  about todays occurances, there have been several severe posts  regarding what I call "ownership" of this forum. I will take the easy one first, Nicknames, the dx of OVCA comes to many women, the majority DO have children, those that don't and are able to conquer the cancer have my sympathy. The median age for a dx of OVCA remains at 59 years of age. Well past childbearing age. Adoption is always a choice. To chastise someone for their choice of a name is being authoratative and controlling.  I have had this nickname for over 10 years, I am known by it wherever I go on the net.
Second, to regulate and judge a poster according to their inquiry of  assistance into what they feel is a related field of their concern, can only lead to giving them a feeling of indifference from you.  What are some of the purposes of this forum?  I thought it was to educate , answer and direct to a proper source, eliviate fear, share like experiences.  We all know that all cysts, fibroids, endo are not OVCA,  but these women coming from their doctors with reports they do not fully understand, turn to the net for help.  Like it or not, you that have been through this, have taken on the task of helping.  How would you have felt when first you posted on the forum about that nagging pain and  bloating, a paper in your hand that said you had a cyst,  if you were told, this forum is just for OVCA.  All cancers start with cysts, tumors, masses, that terminology needs to be dealt with first. It is the surgery and the biopsy that gives the final results, but everything leading up to that causes  fear of the unknown.
In my estimation to become a closed clique of women on an open forum is  controlling, there are leaders and there are sheep,  I prefer that person that is not afraid to speak out, but is willing to listen to others also.  That is why I always say, this is my opinion, and leave the choices to others.  So my choice was to post this for all to read,  your answers will decide whether I stay active or not.  Marty
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19 Comments
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408163_tn?1242953101
Maryty,
Hmmm, what to say. Let me say this. I agree whole heartedly with what you are saying and you say it with such eloquence and fact. There is definitely a nice way and a not so nice way to say things. I applaud all you do on this forum. In my opinion you are one in a million and such an asset to this forum.For me though, I have a husband who had liver cancer and a mother who had uterine cancer. I hope I am not to join the statistics of the OVCA clan. I feel with all the ill will on this forum, I will bow out and continue to research my "complex cysts" (how dare I post about cysts on this forum) elseswhere. If my biopsy comes back positive, I will still post elsewhere, becauuse the process of dealing with health issues is stressful enough without the rude, controlling, comments of a few people on here. Cancer or not, it doesn't give anyone a free pass to be downright mean to others.
I do agree that the pregnancy questions should be directed to another forum, but I felt like the assault was directed at all of us without a diagnosis yet.
Stay well and fight the good fight Marty. Your family is in my prayers. God Bless Laney
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You are a lovely woman, and a joy to read.  I think you should take up writing for a carreer choice.  

Everyone is different, in that we are all the same.  I feel strongly that these women should have a forum for specifically, women with OVCA.  I also feel strongly that you're help on here is invaluable.  I also feel that "newbies" come here, just as you said above, and to direct them elsewhere is not a good option.

I like the MedHelp idea of creating another forum for Ovarian Cysts, opening tomorrow.
I don't want to leave this group.  But I don't have Ovarian Cancer.  Heck, Marty, I also don't have Ovarian Cysts, anymore!  But I will have a voice, and hope that the people who read our posts know that there is a real person, who cares and hurts and laughs and loves, just like they do, behind this keyboard.

All the best, please keep on posting!  I tried to send you notes again today, but I'm blocked from doing so.  (That, or I'm an idiot--take your pick, either works!)lol

love, laughter, comfort, joy.

Donna
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Dearest Marty,

It is with sadness that I post, here, today. I can not believe what has happened to this forum. Although all my pathology came back negative ( I certainly hope I never meet the "new criteria" to post on this forum) I was INVITED by many ladies, both with OVCA and without, to continue to post and communicate with it's members. I am deeply saddened that some feel the need to control where and whom I choose to talk to.

I promised myself I would not type in anger, so this is all I have to say, at this point. I prefer to remain hurt and willing to try to understand why some have chosen to make me feel this way. Of course, I don't HAVE to feel hurt (I shouldn't allow another's words to do that - maybe SHOCKED is a better description of how I feel). Like you, Marty, I will have to give this all some thought.....I don't know if I'll stay or go. I feel, personally, that your postings are invaluable and therefore hope you decide to stay to help the new-comers as well as hte people who jave been here for awhile. I, on the other hand, just post with occasional good wishes and encouragement. I just wanted to "pay back" what I had received.....in the mean time I made some life-long friends. Now, I don't know what I'll do.

Hugs,
Shari
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447161_tn?1262926684
Marty,  
You are a wonderful woman and you put things so eloquently but always with a powerful message.  
I just came onto the post this morning and have been slightly taken aback by what is happening.
I did come on this forum when I was researching my symptoms and was very very scared.  I have had a mother with Ovca but at the time of her dx was quite 'non-informed'.  So my coming on this forum  was to  genuinely try to become more informed about this disease.  Through reading the posts and talking to other women I think I have become a lot more aware of my symptoms, what to look for, and what decisions are going to be the best for me.  
As Marty has put it, many of these women are at the very first stages of having cysts or symptoms and are trying desperately to find answers. I do try to answer anything that I can answer to make someone feel a bit calmer, better and more informed.
I agree that there are some women that come on with problems that do not seem to be directly related to ovca,  but please, be mindful to be patient with anyone that perhaps 'stumbles' on here as they are only trying to look for answers.

This is a good thing that there will be a new forum for cysts, which is perhaps where I should be??, but I will still come on here and keep in touch with ladies i have met, because now I have become friends with and care about them.

Peace and love.....
Kim
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I've had my say about this, I love whom I love and I hope everyone I care about will stay friends with me with or without a designated forum attached...

Everyone has a good point.  And I hope a good night.

love, peace, comfort, joy
Donna
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I'm not sure why you've chosen to take this so personally.  Unless you are making frivoloous, off-topic posts or responding to issues you can know nothing about, then this isn't about you.  Please, just take a minute to go through several pages of posts, and I can't believe you won't see where the frustration is coming from.  Look at the topics, count how many have anything to do with ovca.  If posters just took one minute to think, is this relevant to the topic, Ovarian Cancer, or does it belong somewhere else before posting, then everyone could coexist here.  But, notice how many people seem to think that drowning out and driving away those actually dealing with cancer is OK because they have a problem they think is more important than the topic of this forum.  That is what it has come down to.   Now, I hope you will read this in the spirit it is offered, one of trying to get people to understand.  I don't even know you, so I mean no harm.
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457745_tn?1212929110
I don't post here very often but I do read and try to pick out posts with questions that I feel I can answer the question from my own experience with having a benign ovarian tumor and ovary removed.  This is a public forum and people stumble onto here through may different avenues and web searches out of fear and looking for answers.  Fortunately for me, I found this place as a great source of comfort when I was more terrified than I have been since my mother died when I was 19.  That being said, there are private forums on the web and they have moderators.  To join, you have to send the moderator and email with the reason you want to join and you are then admitted to the group.  I belong to a group like this on MSN for people with pancreatic cancer and those who have relatives that have had pancreatic cancer.  Not to be a downer, but I watched my mother die a horrific death and there was no internet then - there was no where to turn to get support or have my own fears addressed.  The pancreatic purple room is a wonderful place for support.

My point is this:  Is MedHelp a support group or is it a place to go to bounce questions and ideas off of others who may be dealing with the same or a similar situation?  When I came here, I didn't expect a support group, I expected that someone with knowledge might have some insight into my problem and how it might relate to Ovarian Cancer.  I was pleasantly surprised that everyone who answered my post was incredibly supportive of me and I will be forever greatful for that.

Please correct me if I am wrong but ovarian cancer usually starts out with cysts or tumors on/in the ovary and then a biopsy confirms it.  Naturally people are going to come here with questions about cysts because they are fearful of cancer.  Perhaps a forum for ovarian cysts is a good idea but I think that people will still come here and look for answers out of fear of cancer.

I agree, issues relating to pregnancy and the ability to conceive with one ovary and the like are not appropriate (and sometimes insensitive) topics for this forum and those questions are better served on one of the pregnancy forums.

I don't have cancer but I have first hand knowledge of what this disease does to people and families.  My hearts goes out to all of you who are suffering from this dreadful disease.

Janet
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It is absolutely incredible how many of you have rushed to defend everybody's position and right to be here except those with ovarian cancer.  I've tried over and over to get people to see the other side of this by simply reviewing three or four pages of posts, counting how many are off-topic, how many have nothing to do with cancer, etc.  To me it is so obvious what is wrong with this place, but I guess I'm alone in this.  I truly give up and will leave this place to the more important non-cancer issues.  
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167426_tn?1254089835
As I have said before many times before when this comes up, everyone has the right to answer or ignore any post on here. To answer with advice is the choice each one has.. The posts that do not belong here can be ignored and will pass into nothingness. A frightened woman will not always be able to accurately state her problems, sometimes they need help just with the medical terms. By googling cyst, tumor, mass, ovary will bring you to this forum or to one like it, when the words Ovarian cancer pop up, women get scared. In the beginning cancer was a death sentance to me, because I knew only about it from the past. We are trying now to educate women in the early signs of OVCA, to get them caught as early as possible, we cannot in all faith shove them off without that knowledge. I am not frivolous, I am fighting for the rights of those that gain knowledge from here, as I did.
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Dear Paula, Jan and Marty,
I have written you all separately and together today about how I feel.  You know I support you all.  This is a forum for ovarian cancer survivors and their families and I think you should all be allowed to come her to talk about whatever you want to.  I also think this is a forum for those who do not yet know their outcome concerning ovarian cysts.  So far, it's been a place for questions and concerns within these topics.  Lately there have been some strange posts that have nothing to do with either.  I think they shouldn't be here.  MedHelp has hormone forums and fertility forums and women's issue forums for most of these strange posts.  I hope it can get straightened out.

I have to say that I am a little numb by what has transpired today.  I honestly feel like crying b/c I'm not sure how it went from one extreme to the other so fast.  That's all I want to say, mainly b/c that's all I can think of to say.  I guess I just wanted to publicly say what I've said privately to you.  I will check in tomorrow to see if things have calmed down.  

Hugs to you all,
L
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356929_tn?1246393356
Let me just say to begin with that I truly believe the main focus of this forum is for those dx. with OVCA  or their caregivers or family. I also agree with Marty that many of us are directed here.. once we get that little dx. of cyst and then "we need to have you get a TVUS".. then "Well, now we need a CA-125". None of us, I don't think were enraptured by the idea of having a dx. of OVCA but upon doing any kind of research, the possibility was there in black and white. I've said many times how grateful I was to have had this forum to come to for answers and hope.
    I don't post any new threads, I'm only here to answer any questions that a newbie may have that are similar to what I went through. Since December, I've heard "yes, we are welcome here", "No, shouldn't be here" and I must tell you; I;ve never seen such high drama as occurs on this board. There seems to be so much anger ! I know I cannot possibly walk in the shoes of someone dx. with OVCA or their families. But you don't live to be my age without a share of trouble and pain; I lost both by mother and father to cancer (Lung & brain respectively) My father in law died of colon cancer, my daughter's fiance died at 32 from lung cancer thought to be possibly from his mother's taking a drug to prevent miscarriage while carrying him. Today I have a very good friend who is back at JH after finding a nodule on the lung after a total pancreatectomy (sp) She is 47. I don't mean to ramble but no one is immune from trouble, pain and heartbreak.
     All this to say that Marty; I surely hope you decide to stay on this forum. Your voice is so important. I'm going to check out the Ovarian cyst board once they get it up.. but I want you all to know your help has been immeasurable. Actually, no one has gotten upset with me personally.. Truthfully I'm sort of invisible I think.. I notice if I do post in answer to a question, no one answers .. that's o.k. better than to get fussed at..
     I didn't mean to make this so long, but it's been buggin me all afternoon.. I will check out this forum from time to time just to see if any wayward cyst questions land here.. and try to redirect them. There are truly a bunch of wonderful ladies here .. I'm just so sorry that there seem to be such hurt feelings-- not mine.. takes more than that to hurt mine.. I'm a tough ole broad .. Take care and all the best to you and Leslee..
Love, Sandy
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178345_tn?1242539846
I dont beleive this has happened again...we are like a family and I have many people on here that I care deeply about and I dont see what is wrong with posting whatever we are feeling or need to address at that particular time..I also was lucky no to have OVCA ....BUT...I did not know that until I had a complete hysterectomy..I received so much from this forum BEFORE,DURING AND AFTER MY SURGERY that I wanted to give back whatever I could to help someone.. We share in each others troubles and triumphs and with good comes bad and vice versa...I for one will not be leaving this forum because I am Cancer Free! Many people on here are important to me that are going through surgeries,chemo and all other treatments and I am not leaving them if there is some chance that something I can offer may make a difference to them...We share our happy and share or sad times and I have tried to help whoever I can..My heart is to involved with these women to walk away because someone does not think I belong because I dont have Cancer!!! I will not let the people that mean something to me suffer or smile alone!!! This is about SUPPORT!!! I feel like I give that and I get that from being here...I would have never gotten through my ordeal without the tough love and support and caringness I received from here...sometimes we do drift OFF topic but I bet the women suffereing from OVCA enjoy taking some focus off of their illness and talk about other things at times...Lets face it we are all like a family...We need to stick together regardless or not if something is posted that is no interest to you move on to the next post and get over it..,.I feel sometimes there is so much immaturity here and we need not to stress over unimportant issues...,.We need each other!!! Love, Gia
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I came to this site when I googled complex septated ovarian cyst.  I was scared a lot of you helped me to realize I need to take charge of me. Two months later after surgery I was dx with ovca but at an early stage.  I feel that they found my cancer early due in part to the help I received here.  I know it was.

I am saying this because when I came here I did not know anything about ovca I was truly scared, I had numerous cysts before which all turned out to benign.  I knew I was tired of being in pain and doctors telling me how I should be feeling.  All of you helped.

I shudder to think that if I had not got answers and support would I still be arguing with doctors on how I feel with no ammunition to back me up.

Marty you posted earlier this week on being a Hero, You women on this forum are my heros.

With much love and respect,
Dawnlyn
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485259_tn?1326312778
I feel somewhat responsible for causing some of the "drama" on this forum, but I truly feel I did the right thing, if only to make everyone on here stop and think about how powerful words can be - both good and bad. If only we were all as eloquent as Marty (you are wonderful, I agree you should be a writer, you are a voice of comfort and knowledge to all).  If the knowledge learned here saves even one life, then it was worth the inconvenience of an incorrect posting. If a scared women facing unknown diagnosis receives comfort and reassurance, then it was worth the incorrect posting. For those of you who have ovarian cancer, you are in a unique situation and deserve a place to deal with issue unique to you, but please remember, as others have said, you all started where we were once. I have learned so much already, met some wonderful people, and I wish you ALL the best, whatever journey you are on, whether it is fighting the battle of your life or waiting those long frightening days for test results. I apologize to those I may have offended, and I thank those who welcomed me, supported me and most importantly informed me.

Sincerely,
Joelle
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329994_tn?1301666848
Thanks, Jan for saying everything so eloquently.  I wanted to send you a private note to say that, but couldn't do so, so am saying it on here.   and Joelle, you have put it very nicely too.  I have gotten so much information, support and help that I am glad that I was directed to this forum.  No, I cannot understand what the women who have cancer or are caregivers are going through but I can pray. Each and every day for the women on this forum.  I will continue to do that always.

Colleen
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329994_tn?1301666848
I just reread my previous post, I meant thanks MARTY for saying everything so eloquently, so sorry about that!!
Colleen
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155056_tn?1333642288
First of all....no where does it say that forum is "for" women "with" ovarian cancer.  This forum is about OvCa....whether we have it or not, it is this disease that has brought us together.  Those women that have benign cysts....that is the best news that any of could hope for, but, you came here scared, not knowing what was going on or what is going on and we must remember that over 90 percent of all cysts are benign, until we know for sure we are living a nightmare.  So, you have been touched by the fear of OvCa....as for the caregivers, family, friends and relatives....you live this disease every day, and can offer alot of information from that perspective, even the patient needs to understand what their family is going through.  And those of you now battling this beast, you need to come here to share what is going on, how your feel, your treatment....we need  you to help educate and hopefully get to one person that you can convince to get to a doctor, the right doctor early and maybe they will be lucky like I was and be diagnosed early.  You can be life savers.
Together we are here to fight this beast, all in different ways.  As I have said before and will continue to say, the best defense we have here is early detection....we are educating eachother and newcomers everyday, each day we are spreading the word.  Don't shut anyone out, that is just out right rude and we are all way better than that.
As for posts that don't belong....you don't want to respond, move on.  Why was it acceptable for people to post a joke of the day or something personal if they are a survivor/battler???  We are all the same....no one here is different or deserves to be treated differently.  What goes around comes around.
Everyone, I beg of you....for the sake of the newcomers that do need ALL of our help, we bury the hatchette and move forward.  PLEASE.
Pam
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I found this forum when I was afraid of my yet unknown dx of ovca and asked for some answers to my questions.  I needed someone to talk to about my latest TV ultrasound results and talk to others who could relate to my condition.  Those words used to describe my cyst covered ovaries like thick walls,  septations, growning ovaries, neoplasm, etc all were of great concern to me and I could not wait until my schedueled surgery for some answers.  I finally had my ovaries and fallopian tubes removed and pathology was luckily benign, but brenner tumors and serous cystedenoma's and paratubal cysts were found which could have been or have become ovca.  Yes, I was lucky, but I posted my questions here even though I wasn't dx with ovca but came here for support and information.  Thankfully I received that support here and I am very grateful for it.  I hope that this forum will remain open to women looking for answers and support like I was before they have their dx  because we still need that encouragement when we are confused and worried.  Thanks, Tonij
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106886_tn?1281295172
Pam, I just have to tell you that I have been mesmerized by your posts on this matter and I am total agreement regarding all you have had to say about the topic. You have saved me a ton of typing :)

I have been taking some time off to do more research since finding out about some new information regarding my beloved Progesterone and frankly, since I was blindsided by the discovery, I have not been comfortable posting on the whole hormone issue lately (I'm still good with the adhesion info, though!). There is some concern that a woman without ovaries does not utilize the Progesterone and that at very high doses, there might be some concern regarding breast tissue (and getting into trouble later on with all of that). I was on a very high dose of Progesterone for about 8 months. I am not worried, but I do want to do what is best, so I have been consulting with the head specialist at the office where I go for treatments regarding hormones. I meet the doctor again next week since I had my blood draw last week.

OK...a bit random on the post there, but important none-the-less.

Again, my true Surgery Sister, I applaud your words.

I do want to say, though, that even though some of us are upset that there will now be two forums regarding ovarian issues on the patient to patient side of things, Mid is the woman who will make things happen in a positive way. Thank Goodness for that!

Love, Mary
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