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.
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.
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.
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...
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
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..
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.
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.
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
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.
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...
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.
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.
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.
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.
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
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?
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.
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.
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.
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.
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...
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.
I have posted here since approximately 2003...I just wanted to say how much I appreciated all of your comments. I don't usually get so (cannot think of the word I am looking for...) 'enraptured' by a post...I may have just invented a word... But, I just wanted to let you know how much I appreciated all of the elements of your post.
I also will be eager to hear how things go for you.
Yes there is a difference between the advice given on the Members Forum vs. the Expert or doctors forum...they are doctors!
Not that I don't think everyone here is very informed and helpful, but sometimes some direction from the very kind and competent Dr. Goodman, gives some the reassurance to question there own doctors and continue to pursue the a real dx.
That's my point, and those with real symptoms (septated or growing cysts, elevated CA-125, extreme pain, extreme bloating, bleeding or bloody stools, etc. etc.) should be allowed to post and I presume they will be. I just don't like the idea that Med Help would do anything to discourage anyone with real concerns from seeking medical advice before a diagnosis.
This is a unique place, because they do take it seriously, which unfortunately most of the GP , GI and Ob/Gyn population doesn't and therefore the reason for so many late stage diagnosis! Read some of the old posts and see for your self!
OK Lets sort this problem out. the doctor is asking that only posts from women already dx'd with OVCA to post on the expert forum, I can see that. So the posts to that forum should be limited to those that are like getting a second opinion for themselves. "My doctor has ordered this or that for me, what do you think" there can be hundreds of questions pertaining to OVCA, that pop up in the worried womans brain, where does she go for an answer?. The good doctor herself is placing herself on the line when she gives an opinion in answer to those questions. I admire her greatly. We on this side of the forum, in giving advice , must always preface it by saying, IN MY OPINION, Sometimes that is hard to do, I know, Since we know that all of us are different and no chemo, as of yet, fits all, we may be tempted to compare notes, and I think that is what most of us do. To clear up the problem with unwanted posts on the expert forum, what can we do to help? Suggest a new and clearer title pertaining to cysts and concerns , maybe a title like Signs and Symptoms of OVCA, We might be able to direct some of the traffic that way. Actually the title for this forum could be misleading some of the posters, some of you at times have asked posters to take their cysts , bleeding and other problems elsewhere, this forum also almost yells, OVCA, and is populated mostly by those that actually have been dx'd with it. then there are those of you that had the scare, and came out benign, How to separate them? I say we can't, unless they can get the advice to seek expert help from someone. So we push them to get better conversations set up with their doctors. We cannot turn this forum into a select, social club, I don't have OVCA, and would not use the expert forum unless it was to seek a second opinion for Leslee, just to double check her doctors orders. If I am concerned about something pertaining to Leslee I feel confident in asking you all , have you had this, done that and what happened. But then a doctors expert opinion is always good also. I would probably search both places. As I look at this, the experts can offer medical advice we can offer the support. Sorry about my rambling. Marty
Thank you for your comments. I honestly did not realize the doctor forum was only if you had already been diagnosed with OVCA. I have been having my symptoms for almost 2 years and I just wanted some answers. I posted on the doctor site to ask her what she thought about my symptoms and ultrasound findings. I wanted to know her opinion on whether to pursue it further. I realize that she does not see the "complete picture" and gives the best opinion she can give given the circumstances.
I have read through all the posts on here and it does still bother me that some of the posts have talked about the women having "cysts" and "wanting" it to be more. Who would want that? I just think that when you have symptoms of OVCA and even if you know that they can also be symptoms of benign cysts - you just want to be sure. I have read so many posts on here where the women were told that their cysts would not cause pain, bloating, constipation, etc. when they actually DO. Any many posts from women whose doctors thought they just had normal cysts and put them off for months only to find out that they really did have cancer. This is their doctors telling them this, so where does a woman go if she needs answers? It is a very hard situation for someone to be in. and I, for one, was grateful to this site for the fact that so many on here have been willing to listen and offer advice. How do I say this the right way? I am still searching for answers and I think for now, unless I get a diagnosis of cancer, I will refrain from posting on here. I wish only the best to all the women on here, I will continue to keep you in my prayers and check in from time to time to see how you all are doing. Thank you for helping me when I really needed it.
I hope that medhelp will set up another category for questions about ovarian cysts. It obviously reaches a very large audience as almost every woman has had cysts at one time or another whether she knew it or not.
I have asked many times that the people who do not end up with cancer, or those still serarching to stay on the forum and help others who come behind them because as a person with cancer I CAN'T answer questions about all the many things you all go through. I did not spend two years getting jerked around, I didn't have to go through 100 tests to find an answer, I didn't have to put up with the humiliation of begging Drs to take me seriously. I just DON'T know. I know about having ovca. I can answer all kinds of questions on that, but I don't know the first thing about endometriosis or whatever. If you have been coming here getting answers than you owe the people here and you should "pay it forward". This is a community where a good many of us have "lived" for a long time. We want to help those who come here looking for answers, but we can't do that if everybody jumps ship.
Instead of complaining about this site or how bad people are why don't we try and find some constructive ways to help MedHelp help us. For God's sake people, can we please just go back to the playground rules we learned in 1st grade:
PLACE NICE AND GET ALONG. To do that we have to work together to find the best way to help ourselves and those frightened people who come here looking for answers.
I am just tired of all of this. I don't know what the answer is for this but we cannot continue to have these issues that cause so much divisiveness. Any thread that has people wanting to quit posting is not a healthy discussion thread.
Reading your post, I want to tell you something, as I know many of the women on here will also back me up on, we ask that you be proactive in searching for the answers to your health. These women cannot and will not diagnose your illness, only the facts derived from scans, blood work, surgery, path reports can do that. That is why with ongoing posts about the symptoms that each woman is feeling, they usually get the answers about second opinions, or from true life experiences that they have faced that are comparable to those posts. The side effects of a chemo , that one faced, will alert those inquiring about the same drug, how were those side effects handled?, Some of these ladies are much more knowledgeble about certain things, that they themselves faced than others. One of the things that all want to happen is to inform, as many as possible to the early signs of OVCA, nothing makes them feel better than to have a woman come back and post that her mass was benign, ot that if it is cancer that it was caught early. The doctors simply want to deal with those that already have the dx, that is their expertice, Until you can get the answers to your posts about things that you are feeling, you need to seek out those questions from a dedicated medical person. then come back and compare those findings with the forum, the doctor on the expert side will then answer you if you do indeed have OVCA, until then it is your responsibility to get those questions answered by medical personel in your own envionment. These ladies have been pushing those that come to them for answers to seek that help. By law I cannot even give anyone an asperin without a doctors order. So that is why the experts can handle those questions about the actual disease, and the forum can only offer support in a limited way. It is all right to post on the forum about your concerns, no one will tell you not to, but for you to think that any of us can give you expert advice is not logical.
It's a sad commentary that in order to "qualify" to post a question on the doctor's side forum, we need to have been dx with OVCA. I can appreciate all those who do not or cannot reach their doctors or are unable to get expedient answers to their fears. Our sensitivity is heightended by what we are going through, the drugs make us crazy, and we live in daily fear of the "what if's". Though I think Dr. Goodman is wonderful (I, too, have met her); I feel "at home" when I can jump on the forum and talk with all of you whenever I want. In no way am I minimizing anyone's fears, the severity of their disease, etc. But we can do so much more for one another if we just don't beat this issue into the ground anymore. Love to all, Judie :)
I lurked before diagnosis and did not want to post so I would not take away from others with ovarian cancer. It was weird for me to really think I did have ovarian cancer so I did not even post on this board because I did not want to take up the time of those who were going through so much. Since that is the case I think MedHelp did the right thing and that the two questions should be for those who have ovarian cancer since like someone said noone is a fortune teller and the ones with ovarian cancer do need timely postings. Just my opinion.
I think that this post has turned into something more or something it was not meant to be. I have been reading a couple of past threads and as Jan214 said there is some"divisiveness". This debate has now turned into whether or not some of us belong here or not. I know alot of you are saying that those who have not been dx with OVCA can post here but I still feel like there is way more to this thread than we are admitting. I for one can say when I first posted here I was terrified, confused, and alone. My Dr. was throwing the "C word" around and he gave me the CA 125 and was scheduling me for an emegency lap. I had no one to talk to, not even my own DR. I came here and I found peace from so many of you. I was a bit hesitant to post so that is why in caps I put that I was not yet dx. I feared rejection from those who were dx with OVCA. But the first person who wrote to me was Shelly. Then so many more,Lori.Jan, Carol, Gia, Donna. You all made more sense than my own DR. Without you I would have never known that cysts hurt, can cause pain on opposite side, etc. I am forever grateful to you all. I do not think that I have OVCA, there is only a 1% chance I do. But now I am calm, I went and got a second opinion, and I know that I am not crazy.
I will say one thing. Some women do come in throwing the C word around over a simple cyst with no other symptoms. I have not even been dx with OVCA and I find those posts annoying! So imagine how the women who have been dx feel. No offense. It is important that women also do their own research. I did. This forum is so necessary women like Kimmie are a perfect example of the power of the women on this forum.
What we need to remember is that medhelp is trying to make rules that it thinks is best for the majority of the people here. They do not know each member's personal situation...so they are trying to help as many people as possible. But truthfully..I am here looking for some answers for someone I really care about who does have OVCA and the help I find on that side is minimal.
When I read the posts on this side of the forum I find it so much more informative, helpful and supportive than the expert site. The doctor may say you should investigate further your symptoms, but the women on this side will say get your butt into a doctor and you are not wrong to try to find more answers. Isn't that what the women with cysts looking for...that it is ok to make noise and say listen to me because I am scared.
I was on the border of this issue until I remembered a recent situation I have read about here. There was a member looking for some answers, when another person here...someone who has NOT been diagnosed....said you need to do something NOW. That person finally did and found out indeed they had stage 4 OVCA. Without that help from a very valuable non-ovca person who is suffering from cysts...who knows how long before this person would have been diagnosed. Each and every members post is valuable here whether or not they have OVCA...so Colleen to say you shouldn't post...please that would be a grave mistake. Everyone is needed so that everyone's questions can be answered.
The other thing to remember is quickness....I feel like people have their questions answered in a more timely manner over here. You can post a question and receive many answers within minutes or hours but at very least a day. But the poor doctor is one person...not many people, so she only has so much time and if you look some of the questions on the expert forum are sometimes not answered for up to a week. If I were looking for quick answers..then the people here would be my first choice.
I think the question of how terrible the or good the policy is becomes a mute point...it should be how strong will all you remain together to fight this illness no matter what your diagnosis. Fighting over this policy is not going to bring about awareness to this disease. Fighting only takes away from the best thing about this place...the love, support and information it offers.
I agree with you puppyluv which is why women with cancer should have those two questions. There may be something you forgot to ask your oncologist or there is something for which you want a 2nd opinion and Dr. Goodman, God bless her, gives her time and can make that a reality. No offense to those who are not diagnosed but it is really importnat to reserve those questions for women who are fighting for their life.
This certainly turned into quite the discussion! There was never any question about the posting on THIS forum...it was all about whether or not the 2 questions allowed per day on the DOCTOR forum should go to those who have been diagnosed with ovarian cancer. To say you feel unwelcome on this side...well, I'm sorry you got that impression. Like I said earlier, I understand why you post here and would hope you continue to do so.
I was going to post this earlier but did not, but now that Becky has posted, I must say that I think it was quite unfair of you to make it sound like Becky, Katie and Marie were saying things to make you feel like you shouldn't post. I reread their posts and find that to be an unfair assessment. I know all three women have reached out to others on here more times than I can count to help those who did not know what to do or to comfort those that received bad news.
I think this whole da*n thing has gotten way out of control and we had better find some way to contain it before this forum implodes!!
I'm rather hesitant to chime in again and I don't want to beat this into the ground , but I do have a question ..First of all; anything and everything I've learned about OVCA and related issues I've learned from this forum, either from folks dx with OVCA or gals like myself that have been spared that horrible dx.
Having read all the above posts, I'm confused/concerned with some posts suggesting the idea that "cysts" have been lumped into a category that indicates a benign condition only. Isn't it true that some cysts certainly are malignant or can become malignant? Isn't it true that even with US, CA125 , the "absolute" is found only upon biopsy? That was the reason my Dr. insisted on further investigation (plus I'm menopausal).
The reason this concerns me is that I'd hate to have someone dismissed because of having "only cysts", only to find out later, it is indeed something much worse.
I was/am so grateful to have found this site and I was encouraged by some of the ladies who did have many OVCA symptoms , but it turned out to be a benign condition. It gave me some hope which is sorely needed while waiting for results of tests. And yes, I sincerely plan on "paying it forward" on everything I've learned from this forum. Again, many thanks to all of you.
Yes, you are correct, and that's what my situation was too. I just didn't know until the ovary (only had one left) was removed and biopsied. I was one of the lucky ones in the 99% group...but I was scared witless until the surgery. Like Becky said above, I didn't even think that yet another cyst could be ovca, but it was complex not the usual simple. When you google complex cysts, you all know what comes up. Everyone here was super nice to me and I learned a great deal about all the issues of hyster, bios, etc.
I just noticed that the word "cyst" does appear in the Hysterectomy section, at the top. On this forum I often only post to those who land here and have one ovary and are wondering if they can conceive.
We've had similar debates like this in the past.
I am sure this issue will all work out fine, because we are women and WE ALL ROCK!! Jan thanks for saying what you said.
Have a good night everyone.
I am really sorry that my post came across wrong. I was not at all saying that Becky, Marie, and Katie were saying things to me. I think I was thanking them for reminding me about the doctor post. As I have said often, I have received great advice and great support on here (more than you can even realize) and have admiration for all of you fighting this terrible disease!! I apologize, I truly did not mean to offend anyone on here.
Went over to the expert side to see if doctor answered lilbubba's post and saw MedHelp took down their bulletin. I guess they understood it was creating too much controversy and it was time for everyone to move on.
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