THIS FORUM IS FOR OVARIAN CANCER DISCUSSION ONLY!

[Med Help]

We must ask that a number of you stop using this forum (or any other forum) to bash individuals and organizations.  

This is a place for women to share information & support about Ovarian Cancer.  


Med Help International

[nanik]

Just FYI the national cancer institute has a "live" question and answer area. It is very informative but is NOT answered by a physician.

[MickeyVicki]

Regarding the doctor responses to questions posted on the forum...hopefully, the format for such responses will be similar to the other forums, or to these forums in the past.  With that format, the person makes her or his post regarding a medical condition, and the doctor posts a response.  Then, the forum is open to all for a time to allow further questions and commentaries.  This way, the person receives  a "semi-official" medically-based answer from a doctor (note: medical "rules" and liability regulations prevent the dispensing of medical treatment over the internet!), as well as the patient-to-patient comments.  

I find this style very functional, but   I do  find the professional responses lacking in truly meaningful assistance unless that professional has experienced the medical condition first-hand.   It is one thing to quote statistics and so completely another  to share a personal experience with a medical crisis.  It is nice to get a professional response or to read the professional responses left to others, but the patient-to-patient advice was the most helpful to me prior to my surgery in 2004 for a complex ovarian mass, and again earlier this year, with the  cysts and polyps.

[brthbbs]

I agree with Bananie22 about not wanting a Doc. on this forum.  I prefer our real life experiences with the flow that comes from what we have learned from having "been there, done that".  I'm a health care professional and too much of my day is filled with "covering my backside" language.  I need to tell it like I feel it and that's why I love this forum.

[celine149]

I also wondered, when there is a Doc. here if it will be a paid forum? I have posted on the Gastro. board a few times and it was 15-16 dollars each time for Dr. Pho to answer a question.

[Linda J]

Hi Nanik, i commented that I agreed with how you interpreted the statement and now I see my post was removed too. I'm new here, but i'm confused?

Linda J

[Bananie22]

I'm just curious...do you know if Hudson even received a "warning" that she was going to be banned?  Is she banned forever or for a period of time?  This seems pretty drastic to me.  Hudson offered valuable information to the women on this board.  Also, is Crazylady banned?  I haven't seen a post from her in a while and she pretty much thought she was going to end up being banned from posting.  If you ladies are reading this (Hudson and Crazy)...HELLO!  I'm not going to add to what everyone has said because it's all been stated quite well by the previous posters.  
One other question...since a GYN/ONC is going to be answering questions here, will that change the free flowing type of posting going on here?  It's very different on the boards that have an actual doctor answering questions.  

[nanik]

I answered the question that medhelp asked of me above, but they removed my post. Don't know why. To reiterate - my comment was not intended to be, nor do I believe it to be - superfluous.

[fabmom4]

Thank you for responding to our concerns.  I think we are all striving for the same thing.  Unfortunately, sometimes our "hormones" get the best of us, especially when we feel so passionately about something (ie "castration" issue).  It is unfortunate that so many threads were lost.  Some of them did offer pertinent info, but I understand that rules need to be followed, so I guess we just need to be more creative about the way we respond in the future, and hopefully a MUTUAL respect for each other's opinions will result from this situation.

Thanks again...

[my3reasonsy]

I am very glad to hear you are considering adding other forums.  It is really difficult to decide where to post.   I have fibroids and am considering a hysterectomy and would like to have information on this.  Sometimes I would like to ask a doctor a question and other times I would prefer to hear from other women who have had one or are considering having one.  I don't usually post on this forum, because I don't have ovarian cancer, but I do read the posts.  I notice, there is a "Maternal & Child" forum, but the "Womens Health" forum seems to be used to mainly talk about pregnancy and I am not in that category either, but sometimes I do try to answer some of the posted questions.  I have had 3 kids and know a little about being pregnant, lol!  Then of course, the "Hysterectomy" forum, which btw, I agree should be called the "Alternatives to Hysterectomy", is about just that, alternatives.  I also want to say it is really awful to read the word "Castration" used to try to presuade us not to have a hysterectomy.  That is just my opinion.  Anyway, the whole Med Help site is a wonderful thing. I have had other issues, thyroid & heart and have received very good information.  I just hope adding new forums will help someone like me find the answers I'm looking for.  Thank you very much.

[Med Help]

We are working on a number of "new" things:

1) We just partnered with Partners.org (a partnership among Brigham & Women's Hospital, Massachusetts General Hospital and Dana Farber Cancer Insitute). Soon a Gynecologic Oncologist from partners.org will be answering questions in our Ovarian Cancer forum. We hope to have the doctor in place within the next month.

2) We are currently working on the creation of two new forums. (1) Human Sexuality & Relationships and (2)Reproductive Medicine/Fertility. Your suggestion for a forum that deals with only hysterectomy is a good one and we will certainly put it on our list! In addition to the above, we are working on a Prostate Cancer Forum, Othopedics Forum and a Pediatrics Forum.

Med Help International

[celine149]

Excuse me, I meant 2002...Sorry

[Linda J]

Just a question and I am asking without any sarcasm intended:  Does the alternatives to hysterectomy forum have to post "factual information" or are they sometimes posting opinions?

And, is there a way that a forum for questions about hysterectomy ("not" alternatives to hysterectomy) or women's reproductive issues, in general, could be formed? I think many of us here would find that type of forum very useful.

Linda J

[Med Help]

Fab4Mom:  We do visit the forum regularly and we are always deeply touched by the level of sharing and caring that occurs here!  We are also well aware that there are a few women who are ignoring our rules, however, we needed to make it clear that the rules apply to all.  

KathyO:  Freedom of speech is wholeheartedly supported by Med Help International!  However, when people use their speech to malign people or organizations in an open Internet Forum, we must draw the line.  Our rules are clear about this.  We urge you to read the header in the Hysterectomy Forum, as it clearly states (and is underlined) that the forum is for Alternatives to Hysterectomy!

Nanik:  What would make you post such an superfluous statement as "if we find out we are cancer free we are no longer allowed to post here"?  Our statement is:  "We must ask that a number of you stop using this forum (or any other forum) to bash individuals and organizations.  This is a place for women to share information & support about Ovarian Cancer."  

PamNYC:  You seem to understand that we have rules and all we are asking is that people follow them.  Thank you!

dian07:  Med Help is proud of the quality of our forums.  The reason our forums are of such high quality is because we monitor them daily and because we enforce our rules.  Our rules are clear and not terribly restrictive.  However, over the past 12 years, we have seen how quickly the quality of an Internet forum can deteriorate when there are no rules. As for your comments regarding Med Help's "domination of opinion" - too often people mistake the word "opinion" as justification for viciously attacking a person or organization! Our forums welcome all opinions as long as they do not contain personal attacks.  

celine149:  Actually, we did not begin offering forums until 1996. As for your messages being removed, it may be that your message contained a number of inappropriate comments posted by others.  We do not have the staff necessary to pick through and delete each and every inappropriate comment.  If a thread contains a number of inappropriate comments we remove the entire thread. If you were offended by the "castration" remarks, you are welcome to post your comments.  However, please make sure you have all the facts in order and state your comments without bashing anyone else.  

Once again, comments and opinions are ALWAYS welcome as long as people abide by the rules of our forums.

Med Help International

[Linda J]

Hi celine, I agree with all you said. It is frustrating to know that if you disagree with what is being said, you could be silenced with a "ban". This group provides such support to women who have been thru so much, that it seems a real shame. Apparently there are quite a few who have received e-mails stating they will no longer be permitted to post here or on ANY MedHelp forums.

Linda J

[celine149]

I agree completely with Dian. I have posted only a few times on the "Hysterectomy" board. My post's (some of them) have been removed. I did not use any type abusive language or call anyone any names whatsoever. I have been reading and paying (on occasion) for advise from your other forums, since 1992. I don't understand why you are acting this way towards us. I have had a radical hyst. for invasive cancer. I'am very much offened by the castration remarks. Even more offended that you would remove our posts and ban some of us for doing no more that stating our opinions. Women that have had cancer and have gone through surgeries and treatment doesn't need someone coming along and referring to them as being "castrated". Why are you allowing that to happen?

[dian07]

I got wrapped up in other issues and felt I needed to return to our conversation to advise you that my chemo for ovarian cancer ended in September of 2005....I am not being glib as it was not "fun" in any way, shape, or form.  I wouldn't wish this on anyone....I continue to deal with side affects of chemo, hysterectomy, and surgery.....it is a long journey.
Having company and encouragement along the way helps.....I am certain you realize that.  There are women on this Ovarian site who make my cheeks ache from laughing....that is good medicine and it is not toxic....how wonderful when treating this disease!
I must admit I never considered myself "castrated" until I checked out the "Hysterectomy Alternatives" site.....that thought, I must admit, has not set well with me....even my husband is tired of me trying to get him to help me balance my emotions around that thought....
I hope I have made my point and given you a tiny insight to our world....whether the diagnosis is "benign" or "malignant" the nightmare occurs.....it is just that it becomes a "waking and real nightmare" when "malignant" is the word that one is slapped with......one doesn't wake up from that one.  None of us wants a hysterectomy, benign or malignant, and none of us who find ourselves having one needs to be put in a position to try to justify it.
Thanks for listening.
Peace.
duab

[dian07]

You know, if this wasn't so serious for so many women it would be comical.  On the other site I suggested this "conflict" reminds me of a catfight...it is ridiculous. Why is there such a need to be in control by the folks at Med Help....is there a business here that can be held financially liable if someone is offended? Are differing opinions not an option here.....it is stated clearly that " this forum is for patient to patient comments only and is generally not monitored by the forum staff". Until now,I never even knew the forum had a staff....I doubt anybody posting here is anticipating a response from a gyn/oncologist, or even a gyn.
This situation and your need to be in complete control has created a tug-of-war between two groups of women who should be united rather than pitted against eachother. I think that would be a more honorable goal than complete and total domination of opinion and control.
Now, I have said nothing here to insult anyone...will I too find myself banned for offering constructive criticism?
We are all, each and every woman here, better than this....I will not stand by quietly and watch injustice taking the trophy...I trust you won't either.
Respect goes both ways and is required in all amiable relationships.
Peace to us all.
dian

[stircrazy]

I would like to thank you for your vision in creating a space like medhelp.org where an individual may seek and share information concerning battles with disease that she faces or may face, be it personally or by way of a family member or friend.  I know I do not speak for myself only when I say that this space provides a channel of communication and source of comfort and support that otherwise may not be available.  The incredible gift offered through your website is its ability to bring complete strangers together with knowledge and compassion, and to enable those strangers to build a community, and, in some instances, lasting friendships.

Please do not dismantle that community by placing limitations on the expressions of members of this forum.  While those who post and peruse here may not share the same diagnoses, we all share the desire to educate ourselves, to heal emotionally and physically, and to be compassionate toward others.

Thank you.

[kathy o]

What is going on here? I have been fighting Ovarian cancer for three years now and appreciate everyone who is on here for who they are. This is the USA, First Amendment is Freedom of Speech!
Please allow us to be who we are. I have been on this forum for a couple of years now and have never felt any bad vibes, only smart, frustrated and scared women trying to find out if they have Cancer or not and what to do and how to prepare for it. I would feel really bad if people were forced off of this sight. I understand what is going on at the Hysterectomy sight and it was never properly named or introduced correctly and therefore scared, angered and offended many of us with their views, I chose after going there and reading the first two entries to never go back. This is my favorite web sight and I will continue to help anyone on here that I can.
Kathy

[fabmom4]

It is unfortunate that you have had to make such a broad statement in regards to this forum.  If you were to come in here on any given day, you would witness women sharing stories of fear and hope, whether they have been diagnosed with cancer or are awaiting an answer.  There is a bond, a cysterhood, that has formed within here that has seen many women through some tough days (and nights).  I am sure you can understand that we all have bad days and need to vent, and sometimes that might be directed at certain parties.  However, you will notice that it is extremely rare that any of the women here say hurtful things to each other.  Quite the opposite, in fact.  Most of us are loyal to a fault...what you do or say to one of our own, you do or say to us all.  I am not condoning things that might have been said to a SELECT few, but I hope you realize that it is not as common as you may think, and that some of these women here have been verbally attacked, as well.  Please don't judge us here until you see (hear) both sides of the story.