Ovarian Cancer Community

UCWIFE, I would like to apologize for my unorganized thoughts. First, my heart goes out to you. Although I don't know exactly what is going on in your mind and body right now, I have a good Idea. My wife just received her last chemo treatment today. Everything you said just brought back the night we found out she had Ovarian Cancer. I remember that it was like being hit with a hammer. Everything happened so fast and I (WE) felt so helpless. She had the same kinds of symptoms: bloating, cramping, extreme stomach pain, etc. and after doubling over in Target she drove herself to the hospital. Apparently this is the body's way of trying to protect itself. Your stomach may get really bloated and you may look almost like you are pregnant. This is caused by a fluid called ASCITES. We were told that if it gets to be too much that it (ASCITES) can be tapped from your stomach. What I can tell you is that there is hope. My number one piece of advice is to stay positive!!! That is such a big part of healing. Don't let anyone else tell you anything! Except that you are going to win. Nothing else matters. Second, put together a support team of good friends and family. When you have your moments that you just can't be strong, they will be strong for you. This is going to be the most difficult time of your life BUT YOU CAN AND WILL GET THROUGH IT ONE DAY AT A TIME!!!! As bad as it sounds a Marine friend of ours said it best. "When you think you can't do it just say F- IT and do it any way then you get through it and move on!" This actually helped us. You will figure out ways of coping. Feel free to use ours. Third, do some research, I know you probably don't have much time to think about who is going to do your treatments but a little reading up is well worth it. I am not sure where you are located but Minnesota Oncology has been wonderful for my wife, and MD Anderson in Texas is the leading cancer treatment facility in the country. My mom flew there for her treatments and to see a doctor there. Although this will take some time to treat, the initial shock will wear off and you will be able to think straight again. Fourth, stay organized. You will have a lot of doctors in a lot of different offices. Things get mixed up. Any time you get something done, you have the right to get copies right there. I advise you get a good bookbinder and ask for results on disk or paper or whatever they have right at the time of treatments, even if they say they will fax it over to the other doctors. It doesn't always happen on time or sometimes at all. I have made many trips I didn't have to. You may want to get something giving a friend permission to sign for you since your husband is going to be out of commission for a while, but even he can't just sign for you. Even though he is your husband, some places won't release records to him. I had that problem. This is another reason to get copies instantly. Tell them you need the records for a doctor's appointment even if you don't, then you don't have to pay for them. If you are talking to a doctor and they start speaking doctor to you and you don't understand, stop them and make sure you are clear before going on. DO NOT FEEL BAD ABOUT THIS. It is YOUR body. And YOUR life. You are the boss. Same goes with the treatments on your husband. IMPORTANT! Get second opinions. This will not only make sure that you are getting the right treatments, but it will put your mind at ease. Well, I wish I could magically heal you. I wish that nobody had do go through it but you can do it!! Remember that! STAY STRONG!! POSITIVE!! & HOPEFULL!! If I can help or you want to talk to us for questions or whatever, feel free! oemsucks@gmail.com Your friend, Charlie.

I wish to appologize again! I mis-read your post. I thought you said you had been diagnosed with ovarian cancer. I could not figure out how to remove my post. I will pray for negative results. Good luck to you.

Hi Charlie,

No worries. I know it's easy to misread things here on the internet. Sometimes my thoughts are disorganized, too.

When the Dr. told me he was concerned about the mass, my heart sank and it was almost as if he said I had cancer. I am so sorry that you and your wife have had to go through all of this. I wouldn't wish it on anyone.

If you don't mind me asking, how was your wife diagnosed? So far I've only had the ultrasound and blood test. Does she have a lot of problems with her back going out on her? I was brushing my teeth yesterday and I gag really bad when I brush my back teeth. I was bent over and then when I was done, I stood up and sharp shooting pains went through my lower back. I have not noticed looking pregnant yet, but the left side of my abdomen from ribs to ovary feels larger than the right side. Also when I had the ultrasound week before last, the u/s tech said I had bowel gas on the left side over my ovary and that she could not see it.

I'm sorry, I don't mean to bombard you with these questions. Thank you so much for taking the time to help a stranger.

P.S. she didn't have any gagging issues but she did have some back pains.

Hi Charlie,

Thanks for the specifics.

I was not suppose to hear from my dr. today, but on the 28th instead. The nurse called and said they'd be closed next Tuesday so they wanted me to come in today. Our lab's normal range is 35 and below. My CA-125 came back at 150.5. I have been referred to a gynecologic oncologist that is 2 hours away from where I live. Sadly, that's the closest we could get seeing as how we live in such a rural place. I don't have my appointment yet. The Dr. didn't seem overly concerned but did say that this mass needs further investigation.

As far as planning goes, we are in a financial frame of mind. My employer has been working on insurance for us for over a year now. I keep hearing, "they're working on it," over and over again. So now if I qualify for the Charity program, I will have to quit my job since I make $1000 a year more than the max allowance. I am scared, don't get me wrong. But I worry for my kids, my husband, and our future. We were on welfare for a few years, then I got a job and were beginning to see that light at the end of the tunnel. It feels like something just pushed me back in to it again.

Thanks for taking the time to listen. I am glad your wife is doing better. I am happy she had a wonderful Dr.

You have my e-mail address. Please contact me if I can do anything for you. What state are you in? There may be state health care you can apply for. Keep your head up and stay positive!! If you hear the C word it is scary but it doesn't mean the the end.

Your friend,
Charlie.

UCWife, I have been thinking about you and your family. How are things going? Any new news? I hope all is well.
Charlie.

Hi Charlie,

Thanks for taking the time to write. I have an appointment with a gynecological oncologist on October 13th. So I am at that "hurry up and wait, but try not to worry" stage. I've been feeling ok, although I did have an "attack" last week. It wasn't as bad as the one before. But I managed to take meds and warm up a heating pad before it got too bad.

How is your wife doing? I hope you both are doing well.

I've been going through a lot of the same symptoms. I started having pain and found out i had a uti. After finishing the meds the pain was still there. I went to the dr they thought i had an intestinal infections so once again i was back on antibiotics. Pain still did not go away, i have the mirena so i went back to the dr to check it and make sure that it was ok. It was. I had a pap done, normal. I've had a colonoscopy done, normal. I have pain aweful pain, more on my left side. I cut our red meat and it help. My periods have been irregular since this has gone on. The symptoms have gotten progressivly worse. I bloat after some of my meals. I have 10 or more bowel movments a day. I look like im four months pregnant i only weigh 125lbs and my waist is a size 4. Im deff not pregnant.Ive had my gallbladder checked twice. Ive been tested for gluten disease. I was told 3 yrs ago that I had a mass over my left ovary and that was when i was pregnant. Ive had the merina since may 2009. Im 24 yrs old ive had pelvic pain since i was 17. Ive had one laproscopsie when i was 17 it was normally but the pain and sypmtoms ive been going through started 7 months ago. my bowel movements have changed tremendously but we also have gi issues in our family. im scheduled to see a gi soon. i recently had a ultra sound done and i have cysts on one ovary pretty sure my left.i pee like im pregnant and again im not pregnant. i bruise super easy now, i get them and have no idea where theyve come from i also have spider veins under the skin. on my arms legs ears back, i get bad lower back pain and pressure on my tail bone.i had a ct scan and was told my ovaries were enlarged and had fluid on my pelvis. im really not sure whats going on with me. its ridiculous ive been going through testing for 6months now

UNLESS YOU HAVE ABOVE AVERAGE INSURANCE COVERAGE AND A DOCTOR WHO WANTS TO TAKE ADVANTAGE OF THAT, THE SIZE OF YOUR CYSTS ARE ACTUALLY CONSIDERED QUITE SMALL, AND BECAUSE OF THE MASSIVE TRAUMA THAT YOUR BODY WILL GO THROUGH AT THE ONSET OF EARLY MENAPAUSE, OR PARTIAL MENAPAUSE, NOTHING WILL BE DONE ABOUT IT EXCEPT FOR MONITERING, UNLESS, OF COURSE A CYST BECOMES TWISTED OR RUPTURES IN A WAY THAT CAUSES HEMORRAGING. YOU DONT GIVE YOUR AGE SO I SUSPECT YOU ARE YOUNG OR YOU WOULD HAVE EXPERIENCE WITH THIS BY NOW. I HAD MY LEFT OVERY REMOVED BECAUSE OF AN OVARIAN CYST THAT WAS THE SIZE OF A GRAPEFRUIT... AND IT HAD HAIR, TEETH AND I GROSSLY THINK, AN EYEBALL. EW... IT IS CALLED A TERATOMA AND JUST LIKE YOUR EGGS, YOU ARE BORN WITH THEM AND WILL ALWAYS BE PREDISPOSED TO HAVE THEM PLAGUE YOU. GOOD LUCK IN FINDING ANY HEALTH CARE PEOPLE WHO CARE, OR WILL DIAGNOSE ANYTHING... I AM NOW IN THE STAGES OF USING THOSE WORDS LIKE MALIGNANCY BECAUSE OF MANY YEARS OF UNDIAGNOSED FEMALE PROBLEMS THAT THEY STILL DONT GIVE A CRAP ABOUT... THEY NEED TO OK A PILL THAT DOCTORS CAN GIVE TO PATIENTS THEY ARE SICK OF HAVING TO FOR REAL DEAL WITH,, NOT ASSISTED SUICIDE, ASSISTED HOMICIDE..... ISNT THAT WHAT THEY SHOUL CALL IT WHEN DOCTORS KNOW WHAT IS WRONG WITH A PATIENT, AND KNOW THAT IT WILL CAUSE DEATH IF LEFT UNTREATED, AND REFUSE TO TELL WHAT THE REAL DIAGNOSIS IS??? BUT THATS NOT YOU, SO DONT GET SUDDENLY VERY AFRAID...NORMAL EVERY DAY OVARIAN CYSTS ARE NOT OFTEN A CAUSE FOR FEAR....

UCWife,

I have been thinking of you. I hope you are still with us. I havent heard from you in a year. My wife just celebrated her first year since her last chemo treatment. I pray that you are doing well and look forward to hearing from you.

Charlie

Charlie,
I just discovered this site while trying to find answers to my problems, which are almost identical to UCWife's however my mass was found randomly due to an ER visit for kidney stones, in July. My tumor is 7CM and I am having surgery next week to have it removed. I wanted to say thank you for your posts because even though all stories are not the same the similarities are huge and right now I feel like I need some support outside of my personal connections. Your posts are giving me some of the support I need, I already "know" everything you have said but just having someone say it again is assurance that I am doing things right. I know my husband is struggling with my illness too but he is trying really hard to not show it so I feel the need to be his rock too yet deep down inside I am not feeling so great about this. I won't find out if its benign or malignant until I wake up from the surgery and see what kind of scar I have so I am a little freaked out by that. Sorry for venting but I just feel like everyone around me is tired of hearing me complain about feeling sick. I wish you and your wife the best, continued healing for her and many more years together.