Saturday, December 31, 2011

Happy New Year

I hope you are all having a safe and joyous night tonight.  My family and I are headed to Kathy's (soccer mom) house to play LCR.  It's a silly game that somehow becomes fun when mixed with a lot of people.
I wanted to say thank you for all of your support over the past year.  I appreciate each and every one of you.  I will write more soon, but wanted to send out a Happy New Year's wish.
Here's to a wonderfully exciting and HEALTHY 2012.

Tuesday, December 6, 2011

Guest "Lecturer" at Stanford Medical School 11/29/2011

Stanford was my dream school to attend for undergrad.  I did not make it there, but last week had the opportunity to be a guest "lecturer" to 2nd year medical students during their Gynecology Oncology rotation. The California Ovarian Cancer Coalition has a program called STS (Survivors Teaching Students).  The leader of my ovarian cancer support group is heavily involved in the STS program.  I, along with 2 other survivors spoke to a group of 60 or so students during their pathology class.  We spoke about our cancer journey and what we thought future doctors should know about diagnosis and treating ovarian cancer.  The professor came up to me after our platform and asked if I was a professional speaker.  YEA!! She said we were the best panal they have ever had.  It was such a great experience and hopefully puts a face to this disease and helps those students diagnosis Ovarian/Fallopian Tube/Peritoneal Cancers in the future.
I've included here my speech just for mere interest to all of you and to help increase the awareness of this group of cancers. 
Enjoy!  As always, I am open to hearing back from anyone who wants to share their thoughts. 

Good Morning.  My name is Denise.  I bring a few unique perspectives to my cancer diagnosis.  1) I am a Nurse Practitioner and had been working in Women’s Health for 14 years at the time of my diagnosis; 2) is that my official diagnosis was Fallopian Tube cancer; 3) is that I was diagnosed at the age of 38 years old.  
More and more research is coming about that shows the majority of ovarian or primary peritoneal cancers probably start in the Fallopian tubes.  The challenge with diagnosing it as so is due to the late diagnosis and simply that most pathologist aren’t aware to be looking for the fallopian tubes as the primary site. 
It is difficult for me to say exactly when my symptoms started, but I believe it was some time in March or April of 2010.   I remember having a week of lower abdominal pain mixed with bowel pressure, and diarrhea.  I attributed it to something I ate.  About a month later I had similar symptoms and thought that was odd because I could not think of anything I ate to cause the symptoms.  When the symptoms hit the third month, I realized it was at the time of my ovulation.  I never really had any history of painful ovulation prior to this so I thought this was also odd.  I waited another month to see if indeed the symptoms occurred again at ovulation and they did. 
At that time I contacted a NP friend and asked for some lab work and an ultrasound and made an appointment to be seen.  This was August 2010 and at this point I was having a descent amount of lower abdominal pain/pressure, pressure and urgency to urinate, and pressure and frequent BM’s.  What I also thought was odd was I was having severe back pain.  U/a and STD screening were done and came back normal.  My exam on that day was also normal; the NP referred me to GI while we were waiting for the u/s results.
The ultrasound results are still a mystery to this day.  Because I knew the tech and knew how ultrasounds worked, the tech was open in talking to me about the findings.  The tech said he saw a 5 x 6 cm solid mass on my left side.  He made it clear that it was not attached to my ovary or uterus, but that it was displacing my bladder, uterus and lower intestine.  He said I would most likely need a CT scan. BUT MY ULTRASOUND WAS ULTIMATELY READ AS NORMAL.
The GI specialist I saw, luckily, ordered a CT to r/o diverticulosis/diverticulitis due to the bowel changes I was experiencing.
I next saw an OB/Gyn physician, who also reported a normal pelvic exam.  She preferred to wait for the CT results before any further action.
My CT showed multiple soft tissue nodular densities in left lower quadrant. The impression on the CT was endometriosis or neoplasm. 
The ob/gyn physician then ordered tumor markers: CA 125, CA 19-9, and CEA. She made a point to tell me she was concerned because endometriosis does not show up on CT scans so she did not feel the implants were endometriosis.
My Ca 125 was slightly elevated at 50 (normal range 1-35).  She gave me three treatment options at this point: 1) diagnostic laparoscopy, 2) Lupron assuming it is endometriosis or 3) wait.  I admit I really didn’t like any of the options. I was in the frame of mind that I wanted to know what we were dealing with before I agreed to having surgery. I had never had surgery in my life up to this point so was quite reluctant to do so. 
I requested an Gyn Oncologist to review my case.  The Gyn Onc stated “at most” a diagnostic lap could be done by the regular gyn doctor. He said due to my age,
subtle findings on CT and what he considered a normal CA 125 since it is not an accurate test in a pre-menopausal women that he assumed benign findings at the most.  I bring up this point, not as a complaint, against those physicians but as an important aspect for all of you. That even with a CT suspicious for cancer the thought pattern of this being cancer still wasn’t there.  My symptoms were pretty classic for ovarian/fallopian tube cancer so if they ONLY took into account my symptoms, that was reason enough to take me into surgery, but with the CT and slightly elevated CA125 it should have been a slam dunk.
Instead I was put on the routine surgery schedule and booked for surgery 2 ½ months later. 

In the following couple of months my symptoms progressively worsened with continuous abdominal pain, bloating, bowel and bladder pressure and urgency. I also developed referred Right shoulder pain. 

I ultimately had surgery in mid Nov by a friend/colleague of mine.
When he came out of surgery he said my entire pelvic region was one huge solid mass and had severe adhesions attached to the bowel/bladder, and pelvic walls. He explained that I would need a hysterectomy regardless of the test results.

A week later he notified me I had ovarian cancer that was at least a stage 3C because the biopsies were not even taken from the ovaries due to not being able to identify them on surgical exam.

After being referred to a different Gyn Onc, another CT was performed which showed full involvement of my ovaries and mesenteric nodes. I was taken into surgery on Dec 3rd of last year for a complete hysterectomy, debulking cancer surgery and had an 8” bowl resection due to the metastasis. My tumor mass totaled about 19cm.

I started chemo while inpatient on post-op day 6.  Two weeks later I had a chest and intraperitoneal port placed.  I received my first two rounds of chemo in both ports.  With
intraperitoneal chemo they basically pump 2 liters of fluid in your abdomen (1 liter of chemo and 1 liter of saline) and then have you rotate every 15 mins for 2 hours like you’re a pig roasting.  The side effects of the intraperitoneal chemo were too severe for me to handle and I ultimately finished my next 4 rounds of chemo through the chest port. 
I finished chemo at the end of April and since have had a clear CT, pelvic exams, and Ca125’s.

I emphasize to you to listen to your patients’ symptoms and look at the whole picture.  Even with all the modern testing my diagnosis was delayed.  Had I been taken into surgery in Aug/Sept it is possible my diagnosis could have been a late stage 2/early stage 3, and my ovaries and uterus could have been saved.

Dr. Oliver