Nobody believes me

[Reba7]

I don't even know where to begin. Over summer I had some urinary frequency/urgency issues. Just assumed maybe a uti. However since October have had change in bowel movements,nausea,no appetite,and abdominal pains. I have been to urgent care 2x,ER 2x, and to my gyno and my pcp numerous times. My bloodwork has gone crazy. WBC has drastically increased, low lymphocytes, high neutrophils, increased calcium,etc. I have had 2 ct scans . 1 with contrast and 1 without. Ct without contrast only showed scattered diverticuliti on intestines. Ct with contrast showed 3.1cm left ovarian cyst . Ct report said small minimally complex ovarian cyst with a lateral septation. Called my gyno and she says that it is nothing to b conserned about however I am freaking out. I have a history of depression and anxiety so none of my drs r listening to my symptoms. I was told to stay off the Internet and to stop making a "case" for myself. I have also had horrible pressure in pelvic area which I was concerned could b ascites however pressure has went away but could that  bcuz I have high blood pressure and my blood pressure pill includes a diuretic? I am only 35 years old and have had 1 child. Any info or opinions would b greatly appreciated.

[HVAC]

My ct was with contrast. If they had seen ascites they would have noted. Again if you were in the early stages it might not have shown up on CT but later it would. They use an iv for contrast. I could eat nothing. I threw up. even liquids because I had a blocked bowel. I ended up the ER because I threw up bile only for two days and could not stop. The doctor wanted to admit me and do tests but was not allowed to. I had diaphragm spasms. They would last two hours. I would sweat and not be able to breath. I would lay on the floor. I could not even talk. I would take 6 ativan to stop the spasms. I had pain near my ovary and they took my gallbladder out which did not help. I still could not eat several months after surgery. I lost so much weight during chemo I was what they call failure to thrive.

I do have the BRCA gene which carries a high risk of breast and ovarian cancer. Almost everyone in my family had had prostate, breast, or ovarian cancer.

I had no other pain. No diarrhea. No urinary. I started by bleeding for two years straight. I even had an ablation which did not stop the bleeding. Right when I stopped bleeding I started throwing up.Then a couple months later came the diaphragm spasms. Finally I had endometrail biopsy and the pain when she tried to get the dialator in my uterus was so painful the doctor stopped. The pain did not stop so I went to my GP. She did the ultrasound. The next days she called with the results. They were bad and I could tell by her voice it was bad. I still was hopeful.

The oncologist came in with a diagram of a belly he showed me how he was cutting from belly button the pubic bone. He then had a diagram of organs. He kept circling things. All my female organs and the omentum. He said you could wake up with a colostomy bag or no bladder. He said you could have an incision up to the liver if we have to take part of it.

Luckily I did not have a colostomy and I still had my bladder.  I feel very lucky. I was six days in the hospital. In a month from surgery I started chemo therapy. I have been in chemo ever since then.

Alex

[Reba7]

What where ur symptoms? Was ur ct scan with or without contrast? Is there anyway possible that the scattered diverticuliti  on my ct scan could actually b spread cancer and 2 radiologist got it wrong as I am from a small town. Also 1st ct scan without contrast showed a few spots of "gas " in my vaginal vault??? Looked this up on Internet and there is no reason for gas to be in ur vaginal vault could this have been ascites??? However this was not even mentioned in 2nd ct scan with contrast. I am sorry if I am bugging u Alex but I am finding some relief in being able to discuss my situation with someone as I feel I cannot talk with my family they also just believe I am depressed due to the holidays?? I have been having an aching hip pain lately as well is their anyway possible that it could be metastases to the hip bone??? I know that seems alittle crazy but just thought I would ask ur opinion . I have red that it is rare for ovarian cancer to spread to bone without first invading organs.

[HVAC]

If you had advanced cancer it would have showed on the scan definitely. Have you had a colonoscopy? The ultrasound will show if it is ovarian or not. The 9th is not that far off. I was advanced the CT scan showed all the cancer which had spread to 8 places. I think you are going to be there to see him grow up to be married.

Even with all the evidence I did not think I had cancer. I thought they would get in there and it would not be that bad. When they know it serious they go very fast. I was at the oncologist the next day after the ultrasound. I was in surgery in days. Both my ovaries, my fallipian tubes, my untersus, diaphragm, the omentum, and my bowels had cancer. The took out my rectum. Later they found it in my liver and spleen. I have been here 2 1/2 years and am not going anywhere soon. CT I had the day before surgery showed all the cancer.

Have you seen a gastroenterologist yet? If the ultrasound is negative that is where I would go. Even IBS can cause all the symptoms.

Alex

[Reba7]

As far as I know there r no relatives of mine that have had ovarian cancer and only a cousin who past away from breast cancer on my fathers side. I don't understand why or how it is possible for advanced ovarian cancer to sometimes not show up on ct scan especially since I have red that doctors use ct scans to see if cancer has grown or spread. It doesn't make any sense. I am so scared that all this delay with doctors has given time for the cancer to become advanced as I have not had an appetite since thanksgiving, have lost 20 pds, and have been having aching hip pain, racing heart beat from time to time, and I am always freezing cold( always have to cover with a blanket). Drs say that I'm not eating cuz I'm depressed and that explains the weight loss and that blood pressure is elevated cuz I'm stressed out. I have had a change in bowel movements ( yellow diarrhea ) dr took stool samples said came back normal. I don't see how that is possible. I do have a ultrasound scheduled for jan 9th only bcuz I told my gyno that I wanted to find out why my husband and I haven't been able to get pregnant. Still I'm afraid on the 9th that they r gonna finally figure out what I've been saying all along but that it will b to advanced to do anything about it :( I have a 12 year old son and it breaks my heart that I might not b here to see him become a man.

[HVAC]

No stage 4 shows up on ultrasound. There are no doubts by then. I woman has had the cancer at least 4-6 years by then. What you read on ovarian cancer if it is five years old which most studies are is not correct. Things have changed a lot in five years. Now it is considered a chronic illness because many women live normal lives with ovarian cancer.  I stopped reading the internet because the information I got was wrong. People are not statistics. Statistics come from a few people in a study not the whole population. I was 49 when I was diagnosed and that is considered young for ovarian. Everyone else I have met at the cancer hospital with ovarian is older than me.

My psychiatrist used to say if you hear hoof beats look for horses not zebras. In other words don't think about the least likely scenario 1st. I have been on the MS forum and the cancer forum for awhile. Many of the people who right is freaked out because they looked up their symptoms on the internet end up with something else completely.

I am not a doctor but the odds are against you having ovarian cancer especially beyond stage 1. I had major symptoms the kind that you did not have to bring up to a doctor. In my case the doctors thought it was my MS.

Alex

[Reba7]

Thank u so much for ur response. I don't know what to think anymore but u r right I just need to enjoy this holiday with my family and try my hardest to stop worrying. I have red that even stage 4 ovarian cancer can sometimes not show up on ct scans. I don't know if that is true or not but I am driving my self crazy reading information but u r right no matter how much I read or worry it's not gonna change the outcome. I wish u a very merry Christmas and happy new year.

[HVAC]

First off I believe you something is going on. It could be diverticultis which can be serious or even IBS. Have you been to a gastroenterologist?  Ascites would have showed up on the CT scan.  Your chances of ovarian cancer are less than 2% even less with your age. Many women with ovarian have the BRCA mutation or are senior citizens. If you had cancer it would have showed up on the scans. I would wait 3 months then if things are not better go back to the GP. The more you pushed the doctors the less they are going to respond.

I have MS and late stage ovarian and am well educated on my conditions. My doctor tells me to keep what I know to myself. I intimidate doctors. I now do more listening to talking. I also only go in with one complaint even I have not seen the doctor in a year. I also tell them what is going well with me. With Dr. Google the doctors get inindated with patient's self diagnosing.

Here is what I said. "I do not know what is wrong with me but something is terribly wrong.

Whether you are sick or not it is important to focus on your child and live life to the fullest. I have a rare form of multiple sclerosis and late stage ovarian cancer. I have a short life expectancy so I live my life to the fullest. I find worry and regret to be things I do not need. I spend as little time thinking about my illnesses as I can.

I used to be anxious and depressed now I am happy. Worry is trying to control the future something none of us can control. What we worry about does not come to pass but something we never thought of sneaks in there. Give your kid a big hug and have a happy holiday.

This my third since they found my cancer and boy do I enjoy it.

Alex