My Story – Uterine (Endometrial) Cancer: Post-Colposcopy Report

As I reported in the July 2, 2014 post, my gynecologic oncologist (surgeon) performed a Pap (Papanicolaou) test during my six-month post-hysterectomy pelvic exam on June 19. The results showed “Epithelial Cell Abnormality; Atypical Glandular Cells of Undetermined Significance (AGUS).” This was unwelcome news. 

So, yesterday I had a colposcopy (from the Greek word kolpos, referring to the vagina and/or womb, + -scopy, examination with a magnifying instrument) in the doctor’s office. I have learned that the fear accompanying possible cancer recurrence is worse than the shock that came with the original diagnosis.

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The Problem

Since my second vaginal radiation (brachytherapy) treatment in February, I have had a slight vaginal discharge, whitish-yellowish in color with little or no smell and light enough to require wearing just a pantyliner. But when I reported this to my surgeon on June 19, he thought it was worth checking into because it is not a typical complaint six months post-hysterectomy and four months post-radiation. So he did the Pap smear just to be sure all was well, even though routine Paps are no longer performed after a hysterectomy in the absence of a compelling reason. He told me to see my regular gynecologist in three months and to return to see him in six.

While my husband and I were in Seattle at the beginning of July, I received a phone call from the doctor’s office telling me that the Pap report showed abnormal cells, as reported above, but no human papillomavirus (HPV), an organism that is spread by sexual contact and can lead to cancer. So we scheduled a colposcopy for yesterday, July 9, so my surgeon could re-examine the vaginal cuff incision and vault for any signs of recurrent malignancy. In the meantime, I also called the radiation oncologists to ask them whether a vaginal discharge four months after finishing brachytherapy was normal, and they said no—it’s not impossible, but it’s not typical.

I have been very nervous since getting the call on July 1. Driving an hour alone to an “unhappy” appointment yesterday was very stressful, but I pressed on because no one was available to go with me. (It was easier coming back.)

The Exam

Most search results for colposcopy turn up articles about cervical colposcopy and biopsy, but of course I no longer have a cervix. Although many of the basic concepts may still apply, the experience for the patient and the procedure for the gynecologist will be different depending on whether the woman still has her uterus and cervix. Because my only colposcopy occurred post-total hysterectomy (including cervix, fallopian tubes, and ovaries) and post-menopause (which causes atrophy and dryness of the vagina, as does vaginal radiation), bear in mind that my experience may differ from that of a younger premenopausal woman who still has her reproductive organs.

When a woman has a cervix, the examination does not go deep into the abdominal cavity, as it does when the reproductive organs have been removed. Post-hysterectomy, the speculum presses against the vaginal cuff incision, which I found to be very uncomfortable and even painful. More painful still was the application of iodine (Lugol’s solution), which enables the doctor to visualize any abnormal cells that may be present (which, presumably, do not absorb the red stain). This was followed by a spray of vinegar, which is also used as a visualization aid. My doctor said that “nothing jumped out at him,” but because the Pap report showed AGUS he wanted to take the precaution of doing a thorough colposcopic exam.

The only thing he saw was what he called a “skin tag,” which, if that’s what it was, is a benign piece of tissue. He said it would be “highly unusual” for cancer to recur at the site of vaginal radiation, but, taking proper precautions, he did a biopsy. We won’t have the results for 7–10 days, which seems agonizingly long; but apparently the time this takes is somewhat dependent on the insurance company. (I need to investigate this to find out why.) In addition, the doctor said he would be sending the original Pap slide back for re-review. I asked him whether false-positives were common, and he said “we do sometimes see them.” But his main concern was that laboratory clinicians sometimes “overread” specimens, erring on the side of reporting a more severe result to ensure that the patient is followed up appropriately

Assuming that the biopsy comes back negative for cancer recurrence and that the second reading of the June 19 Pap either remains the same or is reduced in severity, then I will return to see the surgeon in a month for a repeat pelvic exam (not a colposcopy) and Pap.

My Thoughts

I have found that my anxiety level and concern have increased since getting the results of this recent Pap report. Back in November 2013, when I was first diagnosed with adenocarcinoma of the endometrium, I was completely surprised, but didn’t feel a great deal of fear. I think the difference between then and now is that in the beginning I was starting from a “clean slate,” so to speak, in the sense that I had a new problem to solve. I approached the situation methodically, handling each step as best I could and never really becoming overwhelmed. But when the threat of recurrence reared its ugly head, I felt that I was going from a serious problem to a worse problem. The possibility that the cancer was not completely removed, or that it was so aggressive that it started to regrow and spread, is pretty powerful.

Along the way, I have met a few people who have been successfully treated for cancer; but for the most part they prefer not to talk too much about it. Although, obviously, I not only don’t mind talking about it but am willing to share my story openly, I now have a greater sensitivity to why it’s so important to move on and not focus on what has been. Today I had a fairly lazy day at home, realizing not for the first time that the best days are of the everyday garden variety. I say this with meaning because gardens hold the seeds of regrowth and renewal, sustaining us with both their nourishment and their beauty. (If you’re on Facebook, take a look at this beautiful video of flowers blooming in slow motion.)

Even though I am still on hold, waiting for yet another lab report and knowing I will need repeated tests of one sort or another, today I feel relieved that I had to see no doctor and am experiencing no illness or pain. Although I am still very sore and have post-exam discharge, these are minor concerns. I am home and watching cooking shows for inspiration while researching and writing this blog post. This is a good way to spend a garden-variety day.

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Resources

Highlighted/underscored text, images, and media contain links to external resources for further education, empowerment, and encouragement.

The stories, information, and resources on this site are intended to supplement—not replace—the advice of your clinical team.

Articles

About.com Video: Getting a Colposcopy Exam

American College of Obstetricians and Gynecologists (ACOG) – Colposcopy

American Family Physician – Evaluation and Management of the AGUS Papanicolaou Smear

Cigna – Colposcopy and Cervical Biopsy

For Women’s Eyes Only – Debates about Pap Tests

Google Images – Colposcopy

Health Communities – Colposcopy and Cervical Punch Biopsy*

*Source: The Johns Hopkins Consumer Guide to Medical Tests; Simeon Margolis, M.D., Ph.D., Medical Editor; Updated by Remedy Health Media (see Books below; this is a consumer reference)

HysterSisters – Colposcopy after a hysterectomy?

Mayo Clinic – Colposcopy

MD Consult Preview: Colposcopy of the Vagina**

**Source: Colposcopy Principles and Practice, 2nd edition; Barbara S. Apgar (see Books below; this is a clinical reference)

MUM.org: Museum of Menstruation & Women’s Health – This site is “odd, funny and well-researched” according to the New York Times

New York Times Health Guide:

– Cervical Biopsy

– Colposcopy-Directed Biopsy

– Pap Smear

Society of Gynecologic Oncology (SGO) – Choosing Wisely: Five Things Physicians and Patients Should Question

WebMD – Colposcopy and Cervical Biopsy

WomensHealth.Gov:

– Pap test

– Pap test fact sheet

World Health Organization / International Agency for Research on Cancer (IARC) – Chapter 7: Colposcopic assessment of cervical intraepithelial neoplasia 

Books

Colposcopy Principles and Practice, 2nd edition; Barbara S. Apgar (a clinical reference)

The Johns Hopkins Consumers Guide to Medical Tests: What You Can Expect, How You Should Prepare, What Your Results Mean; Simeon Margolis (a consumer reference)

General References

Medical Dictionary – The Free Dictionary

mediLexicon.com – Medical Dictionaries, Drugs & Medical Searches

Merriam-Webster Medical Dictionary

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For more information about my personal story with uterine cancer and also about diagnosing and treating this disease with surgery and radiation, please see the Uterine (Endometrial) Cancer page for links. 

And stay tuned for more information about this very important topic.