Just being sensitive...

[ireneo]

Did anyone else see the note posted on the doctor forum about only post there if you have cancer? I understand that they want to save the 2 questions a day for folks with cancer. But when you don't know and you're scared spitless, you aren't thinking as clearly and you want help. I guess what bothered me was the way it was posted with big letters and exclamation point. Then tell folks don't post here if you have cysts, go to the gynecology forum. Just seemed a bit harsh to me. I've never posted a question there but it kind of hurt my feelings :-(  I know, I'm just a bit emotionally goofy right now.

[marie3B]

I know what you mean. When I read it it reminded me how hard it was for me to GET a doctor to come up with my ovca diagnosis. Marie

[Tybear]

I don't mean to sound, well, mean, but I agree with MedHelps decision to post that. I remember trying to post a question way back when, and I could never get on...have you read many of the questions there? So many are about ovarian cysts. Maybe it was the doctor who moderates it, asking MedHelp to post that? Who knows... I guess it's hard for me to think that people actually are concerned they have cancer when they are told they have cysts. I have had ovarian cysts for years and never once suspected it was cancer. Even when i was in the hospital, waiting for the results of my biopsy, I never once thought "it might be cancer". I feel like so many people jump to the conclusion they have cancer when they don't...and coming on here to post "I have an ovarian cyst - could it be cancer?" just seems a little like they are over-reacting. I do feel so bad though, for the women who have to go on for months and months pushing their doctors for a diagnosis. In a perfect world, none of us would have to deal with any of this. I guess I'm a little sensitive right now too...just in the opposite direction though!
I hope I haven't ruffled anyones feathers by writing this...it's just how I feel.
Becky

[Tybear]

Forgot to mention...they could have been a little more tactful in the way they wrote that!

[lvfrogs]

Not sure if I should respond to this or not, but feel a little compelled to do so.  I have posted on the Dr. forum and on this forum.  No, (at least as far as I know) I do not have ovarian cancer; however, I have all the symptoms of OVAC and I posted originally on the doctor forum asking her what I should do because my doctor isn't doing anything.  In the meantime, I also posted on this site.  Everyone on here was so helpful that I have been posting or responding on here even though I still don't know if I have cancer  or not.  Honestly, I have often thought that maybe I shouldn't ask you all questions because you all are going through so much in your lives but I felt a connection here and especially to one person on here (she knows who she is).  I think when you have cysts and all the symptoms of OVAC but haven't had a diagnosis of yes or no, you are scared and you would like to find some answers.  So, I would have to say, that probably my feathers are ruffled a bit by the previous post, but that is just something I will have to deal with.  I certainly hope that by corresponding on here and by posting, that I have not offended anyone, especially with what you are going through.  You will all still remain in my prayers.

Colleen

[Tybear]

I appreciate hearing your side of the story too...I guess I was fortunate in that I didn't do the guessing game when I was diagnosed...I didn't have to push my doctors or wait for months like some of you have. So, while it's easy for someone like me to think the way I do, I can certainly understand why you post here and wouldn't want you feel at all, like you couldn't continue to do so.
Thanks for sharing your side of the story...
Becky

[marie3B]

I do have cancer, and I do value your posts. Stay with us and I hope your ovaries remain cancer-free for all eternity!!  I do understand that the expert forum has limited time to respond to posts, but ovca is such a tricky thing to get a diagnosis on. I was told my right- sided pain "must be a cyst" by not one gyn, but 3!!  I feel for their situation, but it would sure be hard to draw that line on which question could turn out to really be cancer, though not diagnosed. Marie

[Sandymac]

I think the moderator's decision was a good one.. However, having said that I think that "cysts" don't always mean an all clear for OVCA. I think poor Kimmie started out with "only" cysts according to her Drs. Also, I think a lot depends on the age of the patient. I'm postmenopausal and cysts for me might mean a whole different thing than when I was younger. Also, I don't think it can really be determined if a cyst is just a harmless thing without further investigation, so I wouldn't be too quick to minimize the existence of a cyst (speaking only for myself)
     Also, when one first has any symptoms at all, and goes to "search" OVCA is the first thing that comes up... with good reason of course, but it truly is frightening.
    I've not posted on the Dr.s forum because I agree with the policy of having it be only for those diagnosed .I never knew , however, that the policy existed. So possibly having a "disclaimer"  on the sight may be a good idea.
     I hope it's o.k that I "butted in", and I'm so glad you all are here! You helped me so much before my procedure without even knowing it I'm sure.. You all are a fantastic group of ladies..

[puppyluve]

I think that it is very hard to decide where to draw the line. On the top it states what kind of questions you can ask and one of them is screening questions. Well if someone is being screened then they don't know yet if they have OVCA. Also if surgery questions are permitted and you are asking about an upcoming surgery than chances are you don't know if you have OVCA since it is dieagnosed during surgery. I think that there are however many people who go in a panic about cysts when they first find out about them and don't give them a chance to resolve if that is what they will do. There are people out there who were begging for answers for so long and it turned out to be cancer...like marie and kimmie and I am sure many others on this forum....what if they weren't allowed to post because they hadn't been diagnosed yet. Maybe having the opportunity to ask what do you think to the doctor would get someone into their doctor demanding answers  so they aren't diagnosed at stage 4 but maybe stage 1 or 2. Like I said it is hard to draw the line because I also see some important posts over there not being answered because there are some who are asking questions that do belong on the gynecological forum.  

[AnotherKatie]

IMO, I agree with them posting that, and with Becky... only because it is obvious that the doctor only has a certain amount of time.

It's pretty clear... only if diagnosed with cancer.  Those women need answers fast.  
It's only fair.  She shouldn't have to .. ahem... sorry.. waste her time.
No one here is psychic, including her, and to tell the truth, I find it frustrating when women ask her, if she thinks it "might" be cancer.  How the heck does she know?  

Colleen just stick to this side!  Vent away!  That's why we are here!  We know how you feel and we are happy to listen and offer suggestions.

The trouble with the gyne forum is that it is SO broad in scope, and includes a lot of pregnancy questions, that just don't seem to apply to those with ovary problems.  In our case we do kind of end up all mixed up together, don't we, cysts and ovca, usually until surgery and biopsies, and then we get results.  
Becky, I too had cysts for years and never suspected cancer.... until the cysts became complex and my doctor was concerned by that.  You rather learn as you go along, don't you?   Sigh.

Best wishes and hugs to all the women here!!  Any Cyber parties on the horizon?  Maybe we need one!  It's been a tough week.
Love, Katie

[marie3B]

The expert forum is so valuable, that I respect whatever decisions need to be made to keep it up and running. The fact that they answer ANY questions for free is amazing. I know I got a very helpful answer. It is just so hard to know where the cut-off point should be. I am glad I am not the one to have to make such hard decisions. Marie

[ireneo]

I guess my main point was that I wish they had been more tactful instead of yelling about it. I never post questions on any of the expert forums because I figure if I'm that worried about something, I should ask my own doctor right away. And yes, I do appreciate the doctor over there taking time out of her schedule to try to answer questions for total strangers. Very generous of her and that should be respected.

However, I am one of those that came here with "just a cyst." Having had normal female health all my life and now coasting in menopause, the idea of having a fat cyst on my ovary bothered me. I tried not to post too much and whine too often because I wasn't going through the same trials as those with OVCA. But it was helpful to have the chance to ask a question, gather information and yes, even whine a little to women that understand. I hope that never changes. You've all been so encouraging when I was having too many doubts.

[vegas2cr]

my .02.... I have seen so many posts "I hve been bleeding for a year haven't seen a doctor:?  come on people really expect us to diagnose... or 6 doctors have told this person it is a 2cm cyst and is fine... and they want to have cancer.  For me personally I am glad that they posted it... I do have stage IV and had a question and still after 3 weeks can't get it on... Unfortunately with the internet it is cold and you can not see facial expresssions or tell intent...
I would do anything to make someone feel better.. but lets face it we get some questons that just take up space.... no one can see my intent and I am sure I just offended someone not meaning to.  So if I did I am sorry...

[Casey06]

I flatout disagree with the policy.

In the 7 months or so since I have been reading and posting I have seen at least 6 women who originally posted "is this a cyst or is it cancer" and then were diagnosed with OvCa. At least one has since passed, 3 were later diagnosed as stage 4 and I myself was diagnosed as LMP. Many posted for several months before getting there doctors to get the diagnosis right!!! There are probably many more than 6, but I just don't recall them all now.

So I am not sure who or what prompted the note from Medhelp, but I think it is a mistake. They need to allow more posts on the expert forum and then find way to "screen" posts, maybe have a nurse or med student do the screening and send top priority posts to the doctors. Maybe charging a nominal fee, would eliminate any non-urgent posts.

[ireneo]

I think over on the heartboard there is a $20-25 fee for a question. That may be after the 2 freebies. But yes, that would slow some folks down. Sorry to stir up such a hornet's nest. I'm not comfortable either with people asking us to diagnose things. I see that on the heartboard - people post a long list of test results and then ask what does it mean? Duh, I don't know.

This is going to come across as defensive I'm sure but I started here because when my doc first told me about the cyst she said she planned to do a full hysterectomy and have an oncologist on hand. Plus I have 2 friends with OVCA. So yeah, I guess it was on my mind. With all that said, I do understand all your points of view. I'm still happy with the responses and help I got here. You all are patient but not afraid to get real and be firm when needed. Keep it up.

[SimplyStar]

I have to put my 2 cents in on this subject,  free medical advice is such a rarity these days, we all know how many women and men sometimes  come  to this side of the forum for answers.  The good doctor can answer general questions , but a hands on appointment is what is necesssary most of the time. The person with the question gets answers from 1 person there, on this side Many answrr. We are not doctors but the advice is usually very close to the mark. Interupting what a lab test reads, helping figure out just what a doctor said,  what the various symptoms could mean.   I have only posted 1 question over there I think in the time I have been using MedHelp,  I cannot put much faith in a "report" by a doctor on the net, how are they  able to visualize the many symptoms that are asked of them, to post an answer too. I will not put down the good doctor  or MedHelp, as they both offer a service but truthfully ladies, your sage advice is worth many times more, most times that advice is simply , please go see your doctor ASAP. Don't feel put off by the request that "Only cancer is allowed" , I can only hope that posters that do not get their answers there,  come here.

[AnotherKatie]

Honest, not trying to start WWIII here, but I guess my point is:  (big breath in)  

HOW can posting on a web site, to a doctor, in any way shape or form, provide proper answers, before someone is diagnosed?

Women such as the six that you mentioned can come to this side, we can say "Hmmm doesn't sound good, Get thee to your doctor... or another one if need be"  and we can encourage that type of action, but, really, I don't quite understand how posting can provide a cure or a solution...other than just providing a place where women can be prompted to be pro-active about their health.

Best wishes

[rootietootie]

Well when I first came here, I didn't know if I had OVCA or not, I had all the symptoms and elevated CA125, but my "tumors" turned out to be benign, I was one of the lucky 99% club.  Anyway, I wanted support, not really to talk to the doctor, I already had my doctor.  I posted on this side of the forum, and I never felt the need to post over there.  Now I do think it should only be people with OVCA over there.  They are the ones who need it and two questions a day just isn't much.  Just my opinion.  Shannon

[cjmg]

I had just joined and posted a ??? about a 5 cm cyst and then the "warning" post appeared...I feel I may have been last one to post about a cyst. My post had been deleted by the moderator, I suppose.  I would be glad to post on the gynecology forum on this site, but....I don't see a gynecology forum!  Am I missing something?

I understand why the post about only cancer patients...but I can't see another relevant forum section.

Can someone give me a suggestion if I am just missing the correct part of this site?
Thanks!!

[lucymullis]

I am one of many women who was misdiagnosed.  I recieved medical treatment for a year before I was diagnosed.  My heart goes out to anyone concerned about having this monster cancer.  However, I would prefer that those that aren't diagnosed or aren't caregivers work with the gyno forum to make it meet their needs better.  Once on a forum with as many caring folks as this one, it is too easy to develop relationships and not want to move on.  I also understand this because I have done just this with some members.
However, I am going to step out here and be as honest as possible.  I am here to learn things that will help me save my life.  I wake up each morning afraid that I may not live to be with the ones I love.  I need to talk to others that have this fear and gain strength from them.  Before my diagnosis, I had seen what cancer can do; however, until you live with it it is impossible to understand the fear, regardless of your level of compassion.

[ireneo]

Well, the way I move around here (and they do keep changing it) is I click on the words "MedHelp" at the top left corner of the page. That will take you to another page that offers communities. If you click there, you'll see a long list of communities in alphabetical order. The list to the left is patient to patient like this one. The list to the right is the ask an expert (doctor) forums. There is a gynecology spot there, just not on the patient to patient side. Again, I imagine they only allow 2 questions a day so good luck.

[Jan214]

Okay, I just read it and it is just a post like any other and it will roll over.  I made a couple of suggestions because the way it is set up leads everyone to the ovarian cancer forum.  So, maybe they will implement some of those and the problem will ease up.  It was rather harsh and they could have been a little more tactful, but they get the same questions over and over and those Drs donate their valuable time.  I do understand those of you who are put off by this and I was "lucky" that I didn't have to wonder.  I knew I had cancer within a week after seeing my GP for what I thought was a hernia.  Perhaps we could all help by volunteering to take turns going to that forum to answer questions and just tell people that the Dr probably won't answer their question (yes, we'll know which ones) and direct them here.  As Marty said, this is a free site with free advice.  Medhelp is not a God given right and I am VERY grateful that it is here.

[mousewhisperer]

My two cents: I understand where the poster was coming from. But think of it this way, most women that have been diagnosed are seeing many doctors who tell them what is going on with their bodies. For women who are still in the process of trying to figure out what is wrong with them, or are having a hard time getting doctors to listen to them (and it seems to happen alot that women who are really sick cannot get proper care), having someone help them understand what might be going on is a blessing. Also, most doctors wont respond in a forum unless it is about cancer.

[Helmar]

I sort two different opinions over a period of months before I was told I had Stage 4 Ovca... and that was 'one on one' with both Doctors, so how on earth are the Doctors here supposed to be able to say  yes or no with just a description via the computer. I guess they can only suggest, but then to get to the bottom of a problem it's always best to SEE a Doctor... have a proper examination etc. Even then it's hard enough to get the right answers. I tend to agree,  that those who don't have a dx of ovarian cancer would be better to SEE a Doctor...... or two.... and push for the proper tests, rather than try and get the right answers here, which may not be possible.
I hope everyone is having a good weekend, and feeling well...hugs...Helen...

[Laney8463]

Wow, I have a myriad of feelings from reading all these posts. I was one of those people who posted on the expert side to propose a question to Dr. Goodman. Some of us are not fortunate to have proficient docs in real time, real life, outside the forum. As a nurse I know how to advocate for my patients. As a patient I am as scared as the next person. When I researched results of my ultrasounds, complex septated ovarian cysts, I was directed to this forum. I was only looking for information. I did not ask or "search" for ovarian cancer. I was being proactive for myself as I am for my real patients.  The search engine is what put it into my head.
This week after listening to Dr Goodmans advice on here, I had the pleasure of having an appt with her at Mass General. I am fortunate in that aspect that I live in the boston area. Let me say one thing. She is as wonderful in real life as she is on here. She gave me the exact same info face to face as she did in type written print of course with a little more.  She did not tell me to "not worry" about my complex ovarian cysts. She discussed with me detailed options as to what my next step was. And yes, I need to take more steps. I pray I am in the 99% club, but who knows. After having been put off by my regular OB/GYN, I sought more expert advice. Hence, how I ended up here.
My point being, I know I cannot understand to the full capacity the dx of ovarian cancer, but I do understand the fear that it provokes in the human spirit.
I pride myself on being an intelligent human being. However, sometimes when we are in the hot seat and nobody is taking our symptoms seriously, we just sort of accept what our docs are saying as the end all be all.  Well, if the expert forum saves even one life, then I say it is all worth it. I went to the GYN forum, but felt my questions weren't related to what the women were asking on there. There were a lot of pregnancy questions, yeast infection questions etc. I do think people need to see their docs to get started, but if they can't get past that level of initial care then they need expert advice.
So there, I have vented somewhat. I don't know what the answer is, maybe they could add a site for those of us who are holding our breath waiting for a diagnosis. Maybe like someone else said, a different level of practitioner could  screen the questions. UGH!!! I don't know.
I do know, this is an invaluable forum and all your ladies and gentlemen on here are intelligent and have offered me valuable insight wheather you know it or not. You are all in my thoughts and prayers.
God Bless!!!!