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Ovarian Cancer Community
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295767 tn?1240191914

My story

I'm up at this late hour re-living my original dx/surgery. I thought maybe we could all share our stories on when/how we were originally diagnosed and what convinced us something was wrong. I'm not sure what the point of this post is, I guess it could be to warn others on the symptoms they should be aware of when thinking the frightening thought they might be dealing with ovarian cancer. Maybe it is to answer that ever-so-surfacing question that women ask, "These are my symptoms, could I have ovarian cancer?" Maybe it's just because I have been crying for the last hour about how this all came about for me, and I think writing about it would help. I could just write in my "journal" but I thought what the heck, maybe a lot of women will benefit from sharing their original dx stories.

On July 4th, 2007 I went to the ER because I had been experiencing pain in my stomach for the last week, and I looked to be about 7 months pregnant. I knew in the back of my head that something was up, but cancer was never anywhere near my thoughts being that I was only 27 years old with no family history of this disease. I had started to gain unexplained weight rapidly in a matter of 3 months, and the fatigue had us all confused. I had just opened a hair salon in 2006, so we all thought this had to explain my weight gain (stress) and fatigue. I had normal pap smears for years and was always on top of my physicals and yearly exams; ALTHOUGH I do want to make it very clear that a pap smear does not detect ovarian cancer. Back to the 4th of July, an ultra sound was done - I was told to go see my gyn because there looked to be some cysts. I went to my gyn the next day only to have her tell me she did not like the report and she wanted me to have another ultra sound because my uterus was not detected in this one. NOT DETECTED?!? I should have known this could be bad, but my gyn and I both thought it was just an inexperienced tech that performed the ultra sound. On July 9th I went back in for the 2nd ultra sound with my gyn's office. The reason you could not see my uterus was because there was a 7 1/2in mass covering it from one of my ovaries. The ultra sound also detected massive fluid from my pelvis all the way up into my chest. Chills went up and down my spine when my gyn's ultra sound tech decided to pull my gyn from surgery to come and talk to me. She told me I would need surgery and to see a gyn/onc IN CASE it was cancer. The weird thing was the ONLY time I cried while in my gyn's office, was when the tech said, 'oh honey, there is massive fluid all around your lungs, chest and stomach, you must be in pain!' YA THINK?!?!? On July 10th, we went to see a gyn/onc to discuss the surgery. My mom said she nearly fainted when she walked into his office and it read, "Rocky Mountain CANCER Center." Keep in mind, I am 27 ys old! Before he had come in to talk to me, his assistant told me he did not have room for surgery until at least another week. When my gyn/onc took one look at me and my scans, he completely changed his schedule the next day so that I could get in for an emergency surgery due to the fluid buildup. On July 11th I was scheduled for an "exploratory" surgery by the gyn/onc. Before the surgery, we were told it would be very unusual for me to have cancer and that he would be very conservative when deciding what to remove so that I would still have the option to have kids. 4 1/2 hours later I awoke in the recovery room to find out that I did have cancer, stage 3C, and that I underwent a complete hysterectomy, a bowel re-section, and chemo was knocking on my door. Good morning to you too, doc! Unfortunately the cancer had spread to my stomach lining and lymph nodes causing my gyn/onc to put an IP port in my stomach for chemo. A week after I was released, I started to have high fevers and bad night sweats. I went to see my gyn/onc and he ordered a CAT scan. The scan revealed an abscess in my lower pelvic area that needed to be drained. I had to be re-admitted into the hospital for another 3 days to surgically put a drain in my bottom. I walked around with a bag hanging off my butt draining a liquid I can only say resembled dirty dishwasher fluid. The drain/bag was left in for 2 weeks! After my CAT scan came back clean, the bag was removed. Exactly one week later the high fevers started again. I had another CAT scan which revealed ANOTHER abscess and a hole in my bowel which was causing all these infections. As if the drain put back in my bottom wasn't enough, I had to have a colostomy as well. The surgery was a duo - 1) colostomy 2) port in my chest for IV chemo. I was then put on heavy IV antibiotics 5x a day through my chest port. Two days after the surgery I was sent down to imaging (still in hospital) for another CAT scan to make sure I was draining the abscess properly. The tech made a HUGE mistake of hooking my chest port to the machine for the iodine contrast. As soon as he hit start on that puppy I felt a sudden fire in my chest. One hour later it was time for my dose of antibiotics. Once it started to drip, the fire returned. I SCREAMED for them to stop the machine because I felt like I was on fire. I was then sent back to my room with a failed attempt at a CAT scan due to the fire in my chest. I told my nurse what happened with the CAT scan tech and she flipped. Apparently, you are NOT to use a chest port for iodine contrast unless you are doing it by hand because the machine's pressure is too strong - it blew a hole in my port. I had to have another surgery to take it out and put a new one in the NEXT DAY. I continued to take IV antibiotics for a full 2 weeks 5x a day thanks to my Dad who was in charge of getting each bag ready and hooking my port up to them. I started IV chemo in Aug 2007, and started the IP chemo Nov 2007. I completed 6 rounds of IV Taxol/Carbo and 3 rounds of IP Taxol/Cisplat. I have yet to receive remission. I am now on Avastin/Doxil every other week due to cancer spread to my liver. I am now 28 years old, engaged to be married in 2009, and you bet your bottom I will be healthy at my wedding and even healthier 20 years from now. Tears are streaming down my face as I type this....
20 Responses
483733 tn?1326802046
Oh my goodness.  That is so much to go through in such a short time and at your age.  My tears are flowing for you too.  I was fortunate that I ended up benign but I have met so many wonderful women who are suffering from this disease and have learned so much from them all here on this forum.  I feel a roar building in my chest that has to come out at the unfairness and awfulness of this disease and the lack of discussion and attention it gets.  It is those of us who aren't fighting in the trenches every day like you that need to take up the gauntlet and fight for the attention, the resources, and the funding to help women recognize the signs and for the medical and pharmaceutical communities to do more to find a cure.  

I'm so glad you wrote your story.  We need to educate people and patients need to be able to share as a way of dealing.  I'm happy that you are here and will be for a long, long time and that this forum is here to help you and others.  Let's make the world aware that September is Ovarian Cancer month.

Trudie
498596 tn?1210703859
You are the first "post" I read some months ago when I discovered this wonderful forum and you are the reason I am still here everytime I have 10 minutes to open internet.
I remember that I was desperate, sad, angry because Ov cancer happened to my mother.
Day by day, post by post I realized that you, and all other women gave me strength (is it correctly written? :-)) to go on, to discover new treatment and ask onc about every doubt I had.

As months ago I needed you to keep on going on, I am sure that next twenty years there will be so many women who will ask for your words, your help....and you haircut!!!!!
So.....stop your tears and think how precious you are!!!!!!

A big big big hug!!!


329994 tn?1301666848
Oh Deandra, I knew some of your story already but reading this just broke my heart. I do hope that others post how they were diagnosed also, in the hopes that it even helps ONE woman to go see her doctor if she hasn't already. I know that all the help that you have given other women and the advice and support that they receive is invaluable. You are a strong, beautiful (inside and out) woman and I know you will be dancing at your wedding!! Hugs and prayers for you, Colleen
315 tn?1231002174
What a story!!!  You have truly been through the ringer..Your inner strength is so amazing and I am glad to have met you.  You keep up that good fight.  They will find the right chemo and you will dance with NED before your wedding.  ((((hugz)))~~~Joanne
415684 tn?1257332918
First let me say, Deandra, that was such a horrible experience for you that words cannot describe how my heart hurts for you.  My dtrs. (twins) just turned 29 .. so as a Mom and a woman, I am just in agony for you.

My story:  Mammogram 9/05 found "fatty replaced lymph nodes" .. which sent me to by GYN and she had an ultrasound done.  Nothing to worry about.  However, at the same time, I was feeling bloated, burping, passing gas alot.  I asked her to run a  CA-125 (remember, I work for cancer MD's) and she said "no" ... tests are unreliable, yada yada.  I was thinking I was just paranoid from reading all of the info on many of our patients so I let it go .. that was 10/06.  The holidays came and went and I felt no better and clothes getting tighter.  Saw the gastro guy in 3/06 and he gave me pills (?phasezyme?) for gas and sent me on my way.  He did do an ultrasound of my gall bladder and nothing there.  Finally had my yearly PCP appt.   Walked in and told MD that I was miserable, clothes do not fit, pain in my abdomen .. "can't do the twist".  She thought I may be gluten intolerant and asked me to change my diet and see.  I said, I am not leaving without an CT of the chest, abdo & pelvis.  Guess who was right.  Since I work for cancer MD's, I had my test (Thursday) result faxed to the office and read the report before anyone else .. "suggesting ovarian cancer".  I knew what it meant and had all 3 of my MD's in on the discussion.  They all agreed that I needed GYN/ONC and I managed to get an appt for the following Monday.  Next Monday, had surgery. The rest is history.
415684 tn?1257332918
oops .. not that it matters ... but GYN was in 10/05.  Pcp visit was 6/06.  So for at least 9 months, I felt something was wrong
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