Monday, September 6, 2010

September: National Gynecological Cancer Month

A Cautionary Tale - But Maybe TMI??

In 2004 I was diagnosed by endometrial biopsy with complex endometrial hyperplasia, probable endometrial cancer.  I was just a month shy of my 45th birthday.  I scheduled a hysterectomy as quickly as possible, not knowing when I went into surgery if the cancer was too far advanced for surgery or I would come out with a hysterectomy and early stage cancer.

Endometrial cancer is the fourth most common cancer in women.  It is over 90% curable if caught in the earliest stages. There is no easy test to see if you have it.  My pap tests always came back OK.  Most ladies that are diagnosed are past menopause so symptoms like unusual uterine bleeding are more obvious, but a small portion are like I was, still fertile.  This is my story of how I was diagnosed and how I should have listened to what my body was telling me rather than a physician.  Do NOT do what I did and put off fully investigating female health issues.

In 2000 I began having symptoms.  I had them checked out, since almost all the women in my mother's generation of her famiy had hysterectomies and I did not know what a normal menopause was like. I thought I might be going through premature menopause.  I was working more than full time as a manager, and finishing a college degree so I was spending a lot of time at work or doing homework.  In 2002 I decided that the corporate climate was not for me and decided to move companies.  Before looking for another position and quitting my very lucrative job with great insurance benefits I again had everything checked out because I didn't want a new employer to have the burden of someone who was going to right away have a hysterectomy.   I had an ultrasound of my uterus, a CT scan of my abdomen/pelvis, and an IVP of my kidneys. Again I was told not to worry, everything was just fine, I didn't need a hysterectomy. My gynecologist told me I just had fibroid tumors, don't come back for two years.  Relieved I found a new job and changed career paths from giant MegaCorp Insurance Company to the small software firm I work for now.

In 2003 I started having urinary tract infections that wouldn't clear up.  My new PCP (for my new insurance) sent me to a urologist for a cystogram.  I was told there were structural problems.  I agreed, saying it feels like my right kidney is being pulled down and my bladder was being stomped on.  Something did not feel right.  The urologist pooh poohed this and said I was just overweight and I needed a "bladder sling" operation to hold up my bladder.  Yes, I was overweight and gaining more and more in my lower abdomen as if I was pregnant, yet I knew I was not pregnant.  I was eating less and less trying to control the weight and I started feeling really tired.  I started having clear mucous like discharge between periods and the bleeding was getting heavier.  I started getting a round face, very puffy, and my legs and feet started swelling so I couldn't tell I had calves and ankles.  I saw myself in a window reflection once and didn't even recognize me.  I refused to have the bladder operation - it didn't seem right for some reason.

In the December of 2003 I was traveling for work and was actually trying to run across the Atlanta airport to catch another flight carrying my laptop case.  Halfway across the airport I started to bleed profusely even though it was not time for my period.  The gynecologist in 2002 told me that I might have some trouble like this because of perimenopause.  I had to stop, buy something to wear, change clothes and missed my flight - it was another 10 hours of misery until I got home.  It was so bad I debated about going to an Atlanta hospital to be checked out, but decided to make an apppointment when I got home.

Because of my prior diagnosis of fibroids and perimenopause, and the holiday season, I did not get an appointment until February 2004 to see a new gynecologist because I refused to see the old one - I didn't like the fact that he kept telling me nothing was wrong.  My abdomen was getting larger, the puffiness was worse, I was exhausted, and the bleeding now happened if I picked up anything, or moved too quickly.  I should have been more concerned, but I was still thinking it's just fibroids. 

When I had my appointment with the new gynecologist he gave me a half hour lecture about how I was going to leave with a prescription for progestin, and then he did the pelvic exam.  I could see by his face something was not right.  He then immediately perfomed an endometrial biopsy.  I had no pain medication before hand so this was very painful.  His face changed when he was looking and trying to get a biopsy sample and then I knew something was very wrong.  I was sent immediately for a transvaginal ultrasound and the ultrasound tech's face was not right either.  You can tell when someone is trying to "manage" their facial expressions.  I met with the gynecologist and was told I needed to come back in two weeks but I would get the biopsy results in a couple of days.  I asked about the progestin prescription and was told we were going to wait on the biopsy.  I also was scheduled for another CT scan of the abdomen. Not good.

My biopsy came back as complex endometrial hyperplasia with atypia, possible carcinoma in situ.  This can be histologically early cancer, just not a large enough sample to tell, or it could be precancerous.  I scheduled the hysterectomy ASAP but was told I might just get a D&C for biopsy purposes and have to have radiation and chemo before the operation.  We discussed whether the ovaries and fallopian tubes should be removed, and I needed no convincing - I wasn't going through this type of procedure twice so I was scheduled for a TAH BSO - Total abdomenal hysterectomy with bilateral salpingal oopherectomy.

On March 4th 2004 I went in for my hysterectomy.  I remember waking up not knowing if I had actually had a hysterectomy or not.  I remember my sister telling me I had cancer, and the next morning the gynecologist telling me I had the full hysterectomy.  My uterus with the tumor (and one small fibroid) was the size of a football! I asked him if he needed a come-along, a crow bar and a tow truck to pry that sucker out of there. I guess I like to grow my cancers big like prize pumpkins.  After removal he said the cancer seemed more advanced than it appeared during the D & C, but he would wait until the pathology came back to stage it.  The ureter from my right kidney to my bladder was  being pushed away by the size of the tumor and was trying to pull my bladder up at the same time the weight of the tumor was pushing my bladder down.  No wonder it hurt!

Some cancers are staged by the surgeon, and some cancers are always staged by the pathology.  My surgeon staged my cancer as stage IIB uterine cancer because the cancer had superficially started to advance into the cervical neck however the pathologist staged it as stage IC, grade 2 endometrial cancer, adenocarcinoma .  The surgeon did not remove any lymph nodes since he knew that I would need radiation therapy regardless, but that makes the pathology incomplete (no nodes taken).  The treatment is the same for both stages, so I guess it doesn't make any difference, but I use the pathology staging because the prognosis is better. The cancer had invaded into the myometrium approximately 75% through from the endometrium invading the vascular and lymph layers of the uterus.  I received 25 treatments of external beam radiation therapy to my abdomen, and 3 high dose rate vaginal brachytherapy treatments.  I have been cancer free since but have complications from the HDR brachytherapy.

If I had been more agressive with questioning my first gynecologist, my old PCP, and the urologist I might have been able to have the hysterectomy way before the cancer got the size of a football.  I pulled all my imaging reports from the past after the diagnosis of cancer, and found that the radiologists who read them years before my hysterectomy were suggesting that I needed further investigation, possible biopsies due to abnormalities, and not one mentioned a fibroid tumor, just a suspicious mass at the top of the uterus and a grossly enlarged uterus with a very thickened endometrial lining. 

Why didn't my physicians interpret the results the same way the radiologists did?  I don't know but I pull all my medical records on a regular basis now, and read the results myself.   The gynecologist who twice told me there was nothing wrong is no longer practicing (thank heaven).  The old PCP I had is working as a college physician giving out flu shots and birth control pills to students - appropriate for her skillsets I think.  The urologist who told me I was just over weight and needed a bladder sling apologized and admitted he had made an error in judgement.  I no longer see him. 

So don't do as I did and blindly trust professionals to do their jobs correctly.  Don't do as I did and ignore your body and obvious symptoms.  Don't do as I did and delay getting an appointment with a gynecologist if you feel your problems need quick attention. If it is possible find out what problems were found in the female lineage of your family.  There was a strong history of endometrial cancer in my mother's very large family that goes back 3 generations, and also colon cancer - these two types of cancer can be related, but I had never asked.  Please check out the NCI cancer website concerning women's cancers at and familiarize yourself with what symptoms to look for and what preventative steps to take and what testing needs to be done in order to live a longer healthier life.


  1. Tbis is the internet, there is no such thing as TMI.

    I'm bothered but not surprised by how you were treated.

    There is such an important message here, one that I am just learning for myself. There is a seriously messed up power dynamic that goes on between the patients and doctors (and insurance companies and pharmaceutical companies) that leave too many people with inadequate care. Patient education is one very important step, but something else needs to change. Less profit, maybe?

    Anyway, thanks for sharing. :)

  2. Very nicely said Steph, there is no underestimating what can happen when greed enters the patient doctor relationship. There is no incentive for competency and they make more money being asses.

    I know for certain that the urologist who recommended the unnecessary surgery was just trying to make a few quick thousands from my insurance. I also caught him padding my bill
    with extra tests that he didn't do in order to get a higher payment from the insurance company. I made them adjust the bills and reported him to the insurance company. Guess most people don't check.

    The gynecologist that missed the diagnosis was dismissive becuase when I came in to see him the first time I said "I think I need a hysterectomy". Boggy uterus - what kind of diagnosis is that??? Boggy brain is what he had!

    My old PCP wasn't making any bonus money on her HMO capitation payments with me so she basically told me I was losing her money. I didn't realize I was there for a financial consult, I thought I had a health problem that needed fixing.

    It just seems out of whack doesn't it?? Where does the need of the patient come in?

  3. I'm learning...always listen to your "gut" feeling. No pun intended!

    I had my cervix removed, a D&C and a uterine ablation last January for carcinoma in situ.

    One 32 years old I stopped getting my periods!

  4. Jessica: so glad you caught it early enough at the carcinoma in situ stage! Do you have to keep getting tested now, even though you have had the ablation and the cervix removed?

    My innards had never worked the greatest so it was not a bad thing to be done with them.

  5. I am to be tested every 6 mths now. My last pap was normal! If one ever does come back with any abnormalities, the next step is hysterectomy.

  6. Hands off to you. you really had a tough time but the way you overcame it is really a feel good factor and can ignite a positive energy on everyone who have been suffering the same way as you have witnessed before.

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