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Welcome to the Ovarian Cancer Community!
Welcome to the Ovarian Cancer Community. Whether you have just been diagnosed, or have been fighting this disease for years, this is a place for you to ask questions, offer advice, and provide support for other women with Ovarian Cancer. If you have a loved one or are a caregiver for someone with Ovarian Cancer, your questions and comments are always welcome, too.
Ovarian Cancer is known as the silent killer because very often, the early symptoms are mistaken for other illnesses, and it not usually discovered until it has reached the later stages. We are a group dedicated to giving it a voice, however. If caught at an early stage, it can be cured.
You will find people here who have not been posting very long, and others who have been here for awhile. You can find many here every day because this forum has become much more than just a place to ask questions. Through the support offered here, many have become friends because it is easy to find comfort from people who walk in the same shoes as you.
While you're here, please check out the Health Pages located at the top right of the screen. Here you will find several Ovarian Cancer related articles, research, and posts by other members outlining a lot of the things that go along with cancer and treatment. Check out some of the trackers Medhelp offers, like the Chemotherapy Tracker, Pain Management Tracker, and the Complete Blood Count Tracker. These offer easy ways to document treatments and side effects so you can better determine how chemotherapy is affecting you, and even when to expect the days you might feel bad.
When you are comfortable moving around the web site, please complete your profile and let us know a little about you. Many times, it helps members answer your questions if we know if you live in the United States or abroad, your stage if youʼve been diagnosed, and what treatments you may have already had. If you have any questions about navigating the site, or filling out your profile, weʼll be happy to help you.
When you post a question, it is also helpful if you post a new message instead of posting on the end of an old post. The older posts may have been written by members who do not frequent the forum anymore, or their situation may have changed. By starting a new post, the answers you receive are better tailored to your specific question.
Thank you for taking the time to have a look at our forum!
Your Community Leaders,
Mid and Gail (gah_70)
Ovarian Cancer is known as the silent killer because very often, the early symptoms are mistaken for other illnesses, and it not usually discovered until it has reached the later stages. We are a group dedicated to giving it a voice, however. If caught at an early stage, it can be cured.
You will find people here who have not been posting very long, and others who have been here for awhile. You can find many here every day because this forum has become much more than just a place to ask questions. Through the support offered here, many have become friends because it is easy to find comfort from people who walk in the same shoes as you.
While you're here, please check out the Health Pages located at the top right of the screen. Here you will find several Ovarian Cancer related articles, research, and posts by other members outlining a lot of the things that go along with cancer and treatment. Check out some of the trackers Medhelp offers, like the Chemotherapy Tracker, Pain Management Tracker, and the Complete Blood Count Tracker. These offer easy ways to document treatments and side effects so you can better determine how chemotherapy is affecting you, and even when to expect the days you might feel bad.
When you are comfortable moving around the web site, please complete your profile and let us know a little about you. Many times, it helps members answer your questions if we know if you live in the United States or abroad, your stage if youʼve been diagnosed, and what treatments you may have already had. If you have any questions about navigating the site, or filling out your profile, weʼll be happy to help you.
When you post a question, it is also helpful if you post a new message instead of posting on the end of an old post. The older posts may have been written by members who do not frequent the forum anymore, or their situation may have changed. By starting a new post, the answers you receive are better tailored to your specific question.
Thank you for taking the time to have a look at our forum!
Your Community Leaders,
Mid and Gail (gah_70)
COMMUNITY LEADER
To get to our profile, click on the heart under "My MedHelp" at the top of the page. There you can edit information about yourself, post journal articles, post pictures, see notes people have sent to you, and see all the posts to which you have replied, or the posts you have written. To send or receive private messages, click on "inbox" at the top of the page above the search box.
Once there, you can also fill out your Personal Health Record, or PHR. It is private, so no one will be able to see it. Enter your information regarding doctors, medications, surgeries/procedures, and other pertinent information. It is printable, so you can take it to appointments or anywhere else you may need it.
If you have any other questions, please let me know!
Gail
Once there, you can also fill out your Personal Health Record, or PHR. It is private, so no one will be able to see it. Enter your information regarding doctors, medications, surgeries/procedures, and other pertinent information. It is printable, so you can take it to appointments or anywhere else you may need it.
If you have any other questions, please let me know!
Gail
hi i am still having problems trying to figure out how to navigate the site- i would like to know where to go to find the personel profile? or how to find the questions i have posted -sorry thank you sheri
COMMUNITY LEADER
Hello.
You might want to repost your question in a new thread. This one is an existing one that contains the forum welcome message. You would get better response if you start a brand new one.
Thanks.
You might want to repost your question in a new thread. This one is an existing one that contains the forum welcome message. You would get better response if you start a brand new one.
Thanks.
Hi, I have been having irregular periods, sometimes up to 3 or 4 times a months. I saw the Dr about this and had a smear, ultrasound test, and blood test they all came back ok. Now I have severe cramping like period pains most days and now a lower backache which is almost constant and very uncomfortable. I have also had pains in what feels like the ovaries on getting up. Weight gain and I have tried desperately to lose weight. Could it be Ovarian Cancer? Can anyone tell me if I am being silly and worrying about nothing or if this is the signs of Ovarian cancer?
Hello, you have my empathy, how angry and frustrated you must be. I am a breast and ovarian cancer survivor. Three years ago, my sister was also diagnosed with breast cancer and the insurance wouldn't pay for her chemotherapy. I emailed everyone, including the governer of my state here in PA. The only one to email back was our local Representative Tim Solobay. He called Harrisburg and got her insurance to pay for it and take care of the back bills. He was the only one in government to answer my email and he's a hero to me. I hope you find someone to listen to you. Try everyone in your state government, their emails are on the internet or may even be in your local phone book.
Sending positive energy to you, take care, Angie
Sending positive energy to you, take care, Angie
Here's my story. Although I have not been diagnosed with Ovarian Cancer I am extremely concerned that I may have it. I have pretty bad bloating for months now, so much so that it appears that I am pregnant at times. Eating causes it almost immmediately. Diarrhea almost everyday. Frequent urination, Weight gain, although I have tried desperately to lose it. Then I missed my period. I spotted for an entire month, then I finally got my period this month. The period was no where near what my flow normally is. I was bleeding very badly, changing a tampon every 1/2 hour then had to switch to pads. When I urinated it would actually pour out of me. The cramps were very painful.
I went to see my gyno and she has me scheduled for a D&C and a hystoscopy. I have to say I am nervous about all of this. I had not told her about the bloating and other symptoms because I thought they were unrelated at the time but I have done much reading these past 2 weeks. I would appreciate any thoughts. Thank you.
I went to see my gyno and she has me scheduled for a D&C and a hystoscopy. I have to say I am nervous about all of this. I had not told her about the bloating and other symptoms because I thought they were unrelated at the time but I have done much reading these past 2 weeks. I would appreciate any thoughts. Thank you.
I know you were addressing Dr. Goodman, but I just want to say that what you described is similar to my case December2006. They went in and removed the cyst and the pathology came back borderline. they sent off samples to another doctor on the east coast and they said it was stage 1a adenocarcinoma. Then I was advised to take a round of chemo, no surgery. I decided I wanted to live my whole life whether or not I got to have kids (21 at the time). They went in and did a full hysterectomy and found that since the cystectomy the cancer had spread to the other ovary, uterus, diaphram, and possibly the small intestine.
The way my doctor explained it to me was that it is *possible*.. but not sure that the fluid in my cyst may have caused the cancer to spread, or something like that. It was alot of information to take in at one time. I was lucky to have an aggresive and wonderful oncologist named Dr. Liu who was aggressive from the beginning and got me through it. I have had a clean bill of health since sept07. There is NO, absolutely none, history of ovarian cancer in my family.
I have read alot on ovarian cancer and it seems one thing is common among all of the info out there... there isnt much they can predict.. and there is no good way to catch it early if you dont have symptoms. I would feel indifferent if I were you.. a diagnosis of cancer and no recommended chemotherapy. but that is just me.
The way my doctor explained it to me was that it is *possible*.. but not sure that the fluid in my cyst may have caused the cancer to spread, or something like that. It was alot of information to take in at one time. I was lucky to have an aggresive and wonderful oncologist named Dr. Liu who was aggressive from the beginning and got me through it. I have had a clean bill of health since sept07. There is NO, absolutely none, history of ovarian cancer in my family.
I have read alot on ovarian cancer and it seems one thing is common among all of the info out there... there isnt much they can predict.. and there is no good way to catch it early if you dont have symptoms. I would feel indifferent if I were you.. a diagnosis of cancer and no recommended chemotherapy. but that is just me.
My daughter 18 yr old recently had surgery to remove 28 cm ovarian tumor. all symtoms and blown off by two drs but then found great dr . did the surgery and great staging surgery. came back stage 1a grade 2 less than a centimeter of invasive adenocarcinoma. not in the margins.. all other biopsies neg. After tumor board met they say no chemo. I have read and it says all grade 2 chemo . what are your feelings and what data would change a grade 2 to no chmeo. ? I am worried and afraid. Love her Drs they are great gyn onc. In New york. Please your opinion would mean alot. thanks colleen
MEDICAL PROFESSIONAL
Hi there
this is to respond to Azon about her insurance company not authoring surgery.
I encountered that once and found that if the surgery was labeled "therapeutic" as opposed to "prophylactic" it was covered.
That is , if your doctor can document that removing your ovaries is important in the treatment of your breast cancer, it may be covered. That is because there is very compelling information about the improvement in survival and reduction in breast cancer recurrences in women with estrogen receptor positive breast cancer who undergo removal of their ovaries.
As far as removal of the uterus, your doctor will need to find another indication such as: pelvic pain, excessive bleeding, growing fibroids. Insurance companies need specific diagnostic labels.
I hope all works out
take care
this is to respond to Azon about her insurance company not authoring surgery.
I encountered that once and found that if the surgery was labeled "therapeutic" as opposed to "prophylactic" it was covered.
That is , if your doctor can document that removing your ovaries is important in the treatment of your breast cancer, it may be covered. That is because there is very compelling information about the improvement in survival and reduction in breast cancer recurrences in women with estrogen receptor positive breast cancer who undergo removal of their ovaries.
As far as removal of the uterus, your doctor will need to find another indication such as: pelvic pain, excessive bleeding, growing fibroids. Insurance companies need specific diagnostic labels.
I hope all works out
take care
I have read lately that men find gray hair attractive (not that you want to know, but it made me feel better). You sound amazing.
I am conecerned about myselt right now. I am 4 1/2 years out of breast cancer. My sister died with ovarian cancer when she was my age plus 4 years after a long battle. I have suddenly gained tremendous weight in my abdomen. It feels like fat, lumpy and shapable, but my weight is ok elsewhere. I had a hysterectomy a year after bc treatment for propylactic (sp?) reasons, but know the peritoneum is still a concern. Is this just menopause/tomoxifen working together? (I am 53. Chemo put me into menopause suddenly and without apology.)
My lower abdomen swells almost daily. It is uncomfortable often and when I go to urinate, I usually pass stool too. What do you think? I diet and my belly just gets bigger.
I am conecerned about myselt right now. I am 4 1/2 years out of breast cancer. My sister died with ovarian cancer when she was my age plus 4 years after a long battle. I have suddenly gained tremendous weight in my abdomen. It feels like fat, lumpy and shapable, but my weight is ok elsewhere. I had a hysterectomy a year after bc treatment for propylactic (sp?) reasons, but know the peritoneum is still a concern. Is this just menopause/tomoxifen working together? (I am 53. Chemo put me into menopause suddenly and without apology.)
My lower abdomen swells almost daily. It is uncomfortable often and when I go to urinate, I usually pass stool too. What do you think? I diet and my belly just gets bigger.
Good for you!! Glad everything is working out so far. You should be proud of yourself. You got through chemo and you have a great attitude. Keep up the good work and remember that there are a lot of women out there routing for you!
I was diagnosed with stage 3 ovarian cancer June 2008,after much bloating and weight gain and me telling my GP and OB-Gyn that there was something wrong in my body. I told them I felt like I had a alien growing in me!After many ultrasounds,cat scans and finally a PET scan they agreed with me. I had my surgery July 13 and the doc removed my ovaries and tubes,my omentum and scraped my peritinium.Unfortunately it had spread to those places. I started chemo 5 days after surgery and it nearly killed me. I told the doc to be aggressive in everything he did,and boy he took me at my word!I had 6 ropunds of chemo(the rest were not so bad)and my CA125 came down from 3120 to 11.2.I had my last chemo on NOv. 10 and my followup CA125 this past Monday January 5. I go to the Oncologist today at 10:30 for the report. I feel great,look great and have 3/4 inch of new hair on my head. It is grey ,but what the heck!I can dye it again later. Have high hopes for the docs visit.I have some foot and finger neuropothy,and a few minor remnants of the chemo,but I am ALIVE and intend to stay that way as long as I can.Prayers and hugs to all who are on the road with me......
Because I was fairly fit my hand sized tumour pressed on my ligaments so I was in horrible pain and went to my gp -within 3 weeks I had ca 125 test and scan which led very quickly to surgery and chemo-I was at stage 3 and have been ok for 18 mths so yes I agree keep going to the doctor.
Hi there! I can relate to your post. In December, 2006 I was SURE I had cancer. I just kept pushing until I found a doctor that would listen to me, and who asked what I wanted from our appointment. Here is my story... I had a hysterectomy way back in 1989, but they left my ovaries. So, I continued to ovulate and had cramping, etc. Well, 6 months prior to my diagnosis, the pain was becoming erratic. I wondered if it was pre-menopause and ignored it. Then, I started gaining weight. Pretty much all the symptoms that you read about, I had. The final straw was that I (embarrassing) pooped my pants at work. Without warning! I couldn't make it to the bathroom, and that is when I said enough is enough. My GP did a CT scan, saw that my one ovarie was enlarged. Then did a vaginal ultrasound. I still don't really know what the results showed, just that she felt I needed to be seeing a OB/GYN. So, the first one I went to was a man, and didn't know anything about me. Suggested the CA125 tumor marker blood test, which I wanted, and then shooed me out, saying he'd see me in 6 weeks. NOPE, not thinking so, so then on to another. This woman gave me all sorts of suggestions.... treatments for ovarian cysts. She saw the look on my face and nicely asked me.. "what do you want?" Being I was 49, I felt they were quite useless to me, so please... just take them out. She left, came back in and said... How 'bout Thursday? DONE! That was in February, 2008. After that major surgery (they had to open me up from all the scar tissue I had) she showed me pictures, said all went well, and you should be just fine! A week later was back in (I believe it was a sign I needed to be back in the office, because nothing ended up being wrong, as far as the sharp pain). While I was being prepped for another CT scan, to make sure there were no absess from the surgery, the pathology reports just happened to come in while I was there. I was pulled aside with the news. I couldn't believe it yet I had already known. I knew it back in December. In March, I then had a 2nd major surgery to stage my cancer. Thank GOD.. it had not spread. Had I listened to the doctors, I might not have been so lucky! So... continue with persistency!!! I followed up with 6 rounds of chemo, and today, I am still cancer free. So, my advice is be your own advocate, and be persistant until someone listens!!! Good luck to you!!
To go with my post by the way, I have not been diagnosed with ovarian cancer yet, hell I can't get any answers. To add to my post though, I have had lower back pain for months, problems with weight gain and loss and no answers from any doctors. Was wondering if anyone else went through all these things and what it finally took them to get some answers/
I am 51 yrs old and just recently dx of breast cancer, completed my 6 months of chemotheraphy and 5 surgeries, the last was 5 weeks ago. I have a very strong family hx of cancer: my sister has stage lll endometrial-cervical cancer, half-sister has ovarian ca, mother has colon ca, Dad has lung ca and Aunt-maternal side has breast cancer. I have a negative genetic testing (BRCA1 and 2; HNPCC). Because of strong family hx and personal history of cancer, I wan to have prophylactic hysterectomy with salpingo-oopharectomy. I saw a Gynecologic Oncologis who supported my plan but when she requested for authorization for the surgery, my insurance denied my request. Now, I am appealing for their decision. I don't know what can I do to get the authorization for the prophylactic hysterectomy. I am very scared that the cancer will return to my ovaries or uterus. I am still suffering from the side effects of chemotheraphy, I have severe neuropathy of my extremeties. My insurance (TRIWEST) is gambling on my life for not authorizing the surgery just because my genetic test was negative. Please help me on my appeal. I have until the end of November to sent them my letter of appeal. PLEASE HELP. I can be reach @ (my work 206)217-6905 Mon-Fri 0630-1400.
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