Ovarian Cancer Community
Why is this called an Ovarian Cancer site?
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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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Why is this called an Ovarian Cancer site?

Just curious... why is this called an Ovarian cancer site, when it sounds as though most of the women on here don't actually have ovarian cancer? I'm not meaning to be disrespectful, as I can tell how many women obviously use this site for much needed information. I was just browsing the hysterectomy site, and noticed people directing other women to this site who don't have ovarian cancer. Why don't they have a site specific to Gyne problems? I guess it's just hard to read people posting over and over that " theres a 99% chance that it's benign", when, infact,for people like me who come to this site already having cancer, that's obviously not the case. Again, not meaning to be disrespectful, I just feel that the name of this site is a little mis-leading.
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Avatar_n_tn
I have noticed that myself.  I can see how it would be nice for those who actually HAVE ovca to just see threads from each other, instead of being reminded that they are in the unlucky minority.

Is there a way to get a gyne/pelvic issues Forum set up?
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Avatar_n_tn
When I first came here in January, they thought I had ovarian cancer. I got much needed support and established friendships with women on here. I am now able to give support to those who need it. I am still playing a waiting game myself. I don't see any problem with the way people are posting. Unfortunately, most of us know someone who has/had OVCA. We are able to pass on useful information to each other that we can't find anywhere else. Hang on here long enough and you will see what I mean. We will hold your hand too.
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Avatar_n_tn
i would also like to add,even the wonderful ladies on this board who DO have ovca,give comfort,and support,and we have developed wonderful cyber-relationships with everyone on here,those with,and those without ovca
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Avatar_f_tn
I have thought that as well.  Is there a section for ovarian cysts? If there is I don't know where it is.  There seems to be nothing there when you click on, for example, fibroids....there appears to be nothing in the HRT section....

There is a menopause section that looks fine, I myself do not go to it, as it is monitored by a doctor and I just enjoy the patient to patient forum idea ...  The women
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I think that alot of women come here because when the cysts, tumors, or masses are first found - the drs are not 100% sure that they are benign.  So women start looking for info on ovca.  They end up here and get info. After they have been here for a while and established the relationships -  they have their surgeries and most receive good reports.  However, bonds are made and we all like to return the favor that was given us.  Be it support, info, experience, whatever.  It is the unkown that brings us together and the finding out that keeps us together.
~Tascha
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Avatar_n_tn
I began reading from this site back in the day,  way back  when the  much-esteemed Cleveland Clinic was providing personnel to answer questions.  In fact, I posted my first question the week the Clinic ceased  answering questions (autumn 2004.)

In the original days, the staff provided answers only  for questions regarding cancers, treatments, and such.   At one time, the old responses were posted in the archives, and if that is still the case then you can sample for yourself the answers provided by the Clinic.    However, once the staff was no longer answering the questions, the nature of the site changed somewhat.  The site became a forum for frightened women to find answers and   easily-understandable explanations to their questions about cysts, tumors, symptoms, and ovarian conditions in general.  As noted, in the early stages of ovarian masses, there is no way to know (in most cases) if an ovarian mass is malignant or not  without resorting to surgery.  My own mass had "cancer written all over it," yet at surgery it was found to be benign.

I guess what I am saying is that we are doing the best that we can do to help each other.   The forum is powered by ordinary women with varying backgrounds, experiences, and diagnoses.  I myself wish that more women with ovca posted on the site, and shared their experiences with women who are just beginning their struggle.  However, I can imagine that some of them are so busy fighting their disease that they simply cannot expend the resources of time and energy to join us here.  And, as you can read, the majority of the women diagnosed with ovarian masses, are found to be suffering from benign masses, which I believe is a good thing.  

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Thanks for all your responses. I agree with everyones view. I would love to post more often on this site, but I'm afraid of scaring people! While all of you without cancer are trying to reassure  everyone that their masses and tumors are benign, us with cancer are probably sitting there thinking, geez, that sounds like what I went through. I'm certainly not going to frighten people for no reason. ( besides, if you want that, go post a question on the hysterectomy site - sheesh!) I guess I wish it was called something other than an Ovarian Cancer site, that's all!
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Avatar_n_tn
I went to google and typed in "Mom is gone" and this site came up.  Amazing because my Mom was diagnosed with OC Nov 22 and passed into Heaven Dec 22, 05.   4 weeks....4 weeks was all we had to soak this in.  I was with her her last day at home.  She was very coherernt, pain meds did NOTHIING for her.   We had talks, words she asked me to pass on to my teen boys, I sang to her, stroked her head....   She told me she simply was not strong enough, said to me, please don't make me do this any longer.  I said Mom, I would NEVER beg you out of Heaven, I want you in God's lap with his arms craddling you as you feel his breath upon you, as you rest.   The last 18 hours with my Mom was like....a dream...I never thought I would have to witness such a situation.   I won't share more but, if you like, you can visit her website I made for her at
http://delores-spann.memory-of.com
I want to write Chrisine, I understand what she is going thru, our paths are the same.  
I too hope EVERY WOMEN HERE BEATS OC.  Also, more women need to be aware of the symptoms.....sorry if this upset anyone...I am cheering for each of you,honestly.  
Delores' proud daughter, Renee
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Avatar_n_tn
i am sitting here with tears streaming down my face as i read your post..this sounded like such a bitter sweet beautiful and amazing thing to go through..your mother sounds amazing.im so glad you were able to spend those final days with her,as you will never forget it...thank you for sharing this,it puts alot of simple things in to prespective....lots of hugs to you....sonie
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Avatar_n_tn
Yes, I too feel it is unfortunate that so much emphasis is placed on the fact that most of the cysts are benign.  But my concern is not as personal as yours.  My concern that someone will read such posts, and  decide not to seek the initial consultation, or follow-up imaging, or  doctor's appointments, or necessary  surgery.  Such action, or perhaps I should state 'inaction,'  could cost someone her life.

And, for this very reason, I think that it would be good for more of the cancer patients on the site to share their experiences.  Women like Dian are the generally the exception; her cancer was caught early.    Far too often, when ovca is found, a woman finds  herself at stage 3.  The cancer has been growing too long or too quickly.  More prompt intervention is necessary, and hopefully if some women shared their stories of delayed medical attention --- whether by their choice OR by medical staff inaction --- then women would understand the need to seek rapid testing and qualified intervention from a specialist.

Last but not least, in my experience as a personal care assistant, I have found that people are more afraid of cancer treatment than they should be!  It would surely do some patients well to see that other cancer patients are continuing to "have a life" during their treatments, and that with shared knowledge and increased medical aid, it is possible to do something besides lie like the dead during the entire course of treatment.
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Avatar_n_tn
I have been posting questions here because I am not having much luck finding information on clear cell ovarian cancer.  My mother was diagnosed with this in August of 2005.  She has been through so much and if one of you can offer any suggestion to help my mom...she is so important to me and my children.  I could not bear a day without her by my side.  I know what it is like to have cysts and fibroids as I have them myself, but that is not what drew me here.  I would do anything to ease her pain and make her days easier.  She is so important to me.  I'm sorry if I have upset anyone.  You all are very strong women.  Thank you for listening to me.
Jennie
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Avatar_f_tn
Just wanted to say thanks for sharing your mom's story.  I couldn't help but check out her website.  She was so beautiful!  God bless her!  Stories like this really do remind us to treasure each day because you just never know when God will call you home.  What an inspiration...thank you and God bless your family!
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Avatar_n_tn
Dian, your story of how you pushed and got your surgery within 2 days of your initial appt is inspirational to everyone.  We women tend to worry more about what people think of us than we do of saving our own lives!

I am fortunate to live near Boston and have good health insurance (yes, a good HMO does exist!)  In the last 6 weeks I have seen my primary/internist, my gyn, a gyn/onc at my suburban hospital, and a gyn/onc at the Dana Farber Cancer Institute (for a 2nd opinion).  I've had 3 ultrasounds and a CT scan.  Today the NP for the suburban gyn/onc warned me she was concerned I might have "too many cooks."  She may be right, but since my Mom has ovca and waited 6 months between scans before being diagnosed, I was determined to avoid the same mistake. Now it seems my cyst is shrinking (yay) and probably related to scar tissue and adhesions rather than ovarian.  Nothing is definite, so my gyn and I will make a plan of where to go from here.  Be sure I'm not just going to ignore it!

Sports Illustrated last week had a great article about Lance Armstrong.  Lance had a 5% or lower chance of survival when he was diagnosed, but he never gave up, never stopped questioning, never stopped challenging his drs about his treatment.  He even left a highly respected hospital to go to a lesser known dr who had a treatment that seemed better for him.  The article said Lance would not be alive today had he not been so pro-active and PUSHED for what he felt he needed. Dian, I have a feeling you and Lance would get along well!  A lesson for us all!
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Avatar_f_tn
My dear sonie put into words exactly how I am feeling.  
Thank you so much for writing, I saw your mom's website, and what a gorgeous woman!  You can tell she was awesome, what a spirit shines through in the words and the pictures.  That beautiful smile!  She will always live on in you, her family and her friends.
I pray that some day NO woman will ever have to suffer from this terrible disease .... that's why we are all here... to voice our protests....and hope that the research improves....
Love from Katie
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Avatar_f_tn
The deal here is this...I am angry becausse women are not only not taken seriously, but they are bullied into thinking their problems are in their heads....I am also enraged that we as women do not stand up and let these people in the medical field(or any other field for that matter) treat us as if we just fell off the turnip truck!
Do you think for one minute it was by luck I was diagnosed at IC...???  NO!  It is because I refused to leave until I had all the answers I needed....my gyn (who I had never seen before) brushed me off and wanted me to return in 6 weeks for an ultrasound......I said "no", I want it done today....after the ultra sound the tech said "he'll be in touch"....I said no....I will wait for him to read the film ....I refused to leave....when he looked at the pics and said it was probably cancer...he'd be in touch ....I said "NO".....where do I go from here!!!! If I had not been such a "*****" I wouldn't have been diagnosed at IC...IT HAS NOTHING TO DO WITH LUCK....we need to be paying attention and be educated and pro-active.
Whether you want to accept it or not, there are things that those of us who have had ovc have had to endure that those of you who have not had it have not had to endure.....I am thankful for that....you guys should be also. There is a difference between having  a diagnoses of "malignant" and "benign"....some of us knows what it feels like to have the air sucked right out of our lungs..what it feels like to be temporarily blinded...what it feels like when time as we know it stops. The difference should probably be acknowledged somehow....I don't know.... I am certain I have angered someone, but I am speaking from my heart....think I'll quit before you guys want to kick me out of here....I could just delete the whole thing but I'm not going to...some of this stuff needs to be said.....I'll be back soon to see who else I can annoy.....I am definately the black sheep in my husband's family.....I consider it an honor.....maybe I could be the black sheep of the Battalion (you can't kick me out...I named it!).
Peace
dian
I am not going to re-read this because I just might cower and not post it...besides,,all in all...we do need eachother.
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Dian, You have partially posted my words. I have been drawn to this post several times tonight. In the meantime, I have had all sorts of thoughts swirling in my head.  

I recall I found this site by googling "ovarian cancer" about a year and a half ago. I was getting more and more computer savvy and found the amount of information on the web interesting and credible if used and researched wisely. But, I needed to continue to search for an outlet...a forum where it was okay to talk about this illness. To talk about how your breath is taken away.... To talk about the feeling of being "stunned." I have struggled with the philosophy,  which I embrace, of "letting it go" running along side of "what was the purpose of all this?"

I saw a therapist a few years ago since I thought I still needed to work through the numbness that my cancer diagnois brought me. But, I can say that no matter how well trained you are or how kind you are (as this therapist is) no one can fully grasp the inner gut-wrenching feeling that comes along with this ovarian cancer journey. And, so I found myself longing for processing my thoughts and feelings with people who had been in a similar situation. Finally, I found that and I found it here. I found common ground, people with which to share the pain. I celebrate when women report back a benign situation. My heart sinks when I read otherwise. Yet, there is a connection here that I have not found elsewhere.

I am on the other side now as my cancer was also caught early. I needed only the surgery. But, this forum has served a great need....a need for me to continue processing what happened on August 9. 2000 (our only child's 15th birthday) when my (wonderful) doctor called with the news that a malignancy had been found in a cyst....during a (more or less) exploratory surgery....and, the need now to be a crusader for women's health...for giving huge amounts of encouragement to women to RESEARCH and then RESEARCH again...to question and seek and then to finally trust your judgment to make decisions.  

My concerns were brushed off, too, Dian. I was very frustrated. I was in pain. I'd already had severe cervical dysplasia and the LEEP procedure. I tend not to overreact to things...but, I know my body and I knew something was not right. I questioned the nurse who called to say that my ultra sound was "fine"...as she was hanging up, I mentioned that the US tech had pointed out two questionable cysts. To this day, I am grateful for that tech. The next week I got bad pap results yet again, after already having surgery for near cervical cancer. I used this time to start fresh and I switched to another doctor in the same practice to do my colposcopy. I found bravery to question him about his partner's decision to dismiss my concerns about my cycsts... He and I agreed together to watch things closely ...and, I knew when I was finally being heard. This doctor heard me and quite possibly saved my life. And, for me, it took a male physician to give empathy and support...and, I would agree that this is probably a matter of personality...and, this is probably another post!

What I found on this site has absolutely amazed me. Never would I have dreamt that I would form such great relationships on line. It is strange. But, I don't question it anymore. This site is important to me. It helps me understand myself...calm or comfort others...laugh...share experiences and encouragement. I hang around now for many reasons, including sharing the struggles I have faced such as the pain of and then ultimate relief for surgical adhesions. And, as many of you know, I feel as if I have a masters degree in bioidentical hormones (I don't...just feels that way) and the immense help they have given me with my surgical menopause. My passion now is to continue to study and share information about these helpful hormones. There is so much confusion about these and the effects they have on the human body. Confusion about all of the studies...The differences between HRT and B(bioidentical)HRT are great...as well as misunderstood. I will continue to do my research and share my experiences.

I read your post with interest and building passion inside of me, Dian. I am not sure why you thought people might be upset with what you wrote.  It actually has helped encourage me to want to tell my story without thinking that I am going to alarm others. I think ultimately we have a third sense about our bodies. Thank you for sharing your post and for sharing yourself. I have admired you...your passion for helping others. I am honored to be one of the "cysters" on this site.

Goodnight to everyone.

Take care, Mary
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Avatar_n_tn
Are you kidding...that's what I like about you!  You empower women!  Don't ever edit your posts.  I appreciate the straight talk.
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Avatar_n_tn
Since there is only 1% of us we sure wouldn't have a whole lot of people to chat with. Once in a while it does bother me to be in the 1% but I am so much more happy when one of you comes through Cancer free, to know you do not have to go through this struggle is a good thing!!  There are so many smart and helpful women on here that I don't want any of you to leave.
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Avatar_f_tn
A big DITTO to kathy o.....I feel uneasy when one of our cysters suddenly stop visiting here.....loosing 99% of us would be terrible, ...besides....you guys are my best medicine...it is said, you know, laughter is the best medicine! I can't tell you how many smiles and down right "laugh out loud " moments you provide daily. I am eternally grateful.
Happy Mother's Day to all!
Peace.
dian
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132752_tn?1273345873
Dian...
I remember Mary's words responding to my first post, telling me that I would surely be hearing from you.  I remember your words to me, and have seen them consistently go out to so many others we "HAVE ONLY ONE CHANCE TO GET THIS RIGHT".  Your words get to the heart of this dreadful journey.  
I share your frustration at how stupid some of our doctors cause us to feel.  I don't have the scientific research savvy to clinically find a cure for this damned thing.  I just have a terrible need to get the word out to women everywhere of what the h#%% to look for, and who to go to when they feel it.  It just makes me so sad to read so many desperate posts...women who are consistently being ignored or made to wait and see.  Over and over again, thank you for the strength of your words and the love that is behind them.  God bless.
peace,
Anne
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Thanks for the kind words, Mickey.

Mary
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117289_tn?1391716425
I know that I am probably the one who shouts 99% the loudest and I truly do not mean any disrespect to any of the ladies that have been dx with ovca.  All I want to do is help and try to calm the nerves of some very frightened women.  I also encourage them to get medical attention and to not ignore their symptoms.  We are all in the 1% until true dx.  It breaks my heart when a sister is dx with ovca.  At that time all I can do is offer my support and prayers.  I am sorry if I have offended anyone in anyway - this was not my intention.
~Tascha
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Avatar_n_tn
As far as I am concerned, you do have a Master's Degree in bioidentical hormones.  You received said degree from the School of Life.  You know your facts, and  you have posted some good resource information.   I've met doctors who cannot do that.
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Avatar_n_tn
My dear Tybear,
     Your question couldn't be more accurate.  I tried back at the beginning of April coming on this forum.  I felt shot down fast by the 99% club.  They made me feel like I shouldn't be talking about my Ovarian Cancer Stage III-C, as if I was scaring others.  Ha!  This is the name of the forum.  I was initally dx late Aug 2005, and I am now....into my 2nd line of chemotherapy.  I came on here looking for support, and actually became very disappointed by many.  I rarely open this website anymore, except occasionally to see if anyone out there really knows how bad those of us are really suffering.  Thanks, Tybear, I am with you, girl.  Let's get a real forum for those of us actually diagnosed with this insidious disease.   Cancer doesn't have me;  I have Cancer. I love my life;  I have strong faith, and am fighting daily from the bottom of my soul.
     My love and support goes out to you, Tybear, and all the other OVCA women learning how to live, daily, with this.
                                             Carelyn
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I am so sorry if in anyway I made you feel shot down.  This has never been my intention.  When I first came to this site, I was frightened and found wonderful support.  Prior to surgery, I thought that I would have a dx ov ovca based on the info given to me by the radiologists and the symptoms that I had.  I was one of the lucky ones.  Not for one minute would I ever even know what it is like to be in your shoes.  I am crushed when I see that another wonderful woman has been given the dx of ovca.  It breaks my heart.  I can only offer my support and prayers.  I would never consider shutting out anyone.  You are so brave and strong and we need you.  Please do not think that you are not welcomed.  I have learned so much from you and others and I spread that knowledge to my two sisters and every woman I know.  We need to educate each other and help stop this horrible cancer.  Please reconsider, as there are so many women here who need you.
~Tascha
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Avatar_n_tn
I stick around because these women were here for me when I was going thru a scary time and I hope that i can be of help to someone in a similar situation. If people stopped posting after their fears were relieved then there would not be very many opinions here for the next crowd of women in fear to come to for help.
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