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Contribution from Terri Winogrodzki
During the summer of 2010 I began having irregular menstrual periods. I had skipped periods a few times in the past, so I wasn’t too concerned and knew there was no chance of pregnancy. However, this time was different in that I skipped three in a row. Then in October I began spotting very lightly every day. I knew my regular annual gynecological exam was schedule for mid-November, so I decided to wait until my appointment to address the problem.
At my annual appointment the doctor did an endometrial biopsy and explained that I was experiencing a buildup of the endometrial lining. He prescribed progesterone to aid in the shedding of the endometrial lining and warned that I would experience very heavy bleeding for several days after about a week of taking it. Having just turned 40 and not wanting to have children (and having suffered from painful periods my entire life), I briefly discussed hysterectomy with the doctor. A follow up appointment was scheduled for three months later to see how things were progressing after taking the progesterone.
In February 2011 at my appointment with the gynecologist, I explained that I had indeed experienced very heavy bleeding from the progesterone and was ready to seriously discuss hysterectomy. The doctor informed me that my endometrial biopsy from November had shown complex hyperplasia with atypia and agreed that it was a good idea to remove the uterus because of the pre-cancerous cells. He explained a procedure called Laparoscopic Supracervical Hysterectomy, where they make three or four small incisions, cut the uterus in pieces to remove it, and leave the cervix and ovaries in place. He said the recovery time is about 2 or 3 weeks for most people. Of course, he also explained if they ran into problems during the procedure there was always the chance they might have to do a traditional abdominal incision, and that if he saw any issues with my ovaries during the surgery he would remove them as well.
Surgery was scheduled for June 8, 2011. On June 1st, I had pre-op testing performed and had another endometrial biopsy. The doctor explained that if my diagnosis of complex hyperplasia with atypia had changed to cancer cells, he would not be able to cut the uterus apart to remove it, due to the chance of spreading cancer cells. A few days later I received a phone call from the doctor. The endometrial biopsy didn’t show any change; however, he explained that my hemoglobin levels were too low to allow me to be put under with anesthesia. No doubt, this was due to the heavy bleeding after taking the progesterone. Though I was very upset that surgery had to be postponed, I understood the dangers. He prescribed that I take a high dosage of iron for the next 3 months to get my levels up to an acceptable range for surgery. Surgery was rescheduled for September 21. When I had pre-op blood work done this time, everything was acceptable. I did not have another endometrial biopsy.
On September 21, 2011, about a month before my 41st birthday, the doctor performed the laparoscopic supracervical hysterectomy. Everything went well and he did not have to remove my ovaries. This was a relief, as I did not want to experience menopause any sooner than necessary. I spent the night in the hospital and returned to work full-time about 2-1/2 weeks later. I have to admit, my recovery was pretty easy, and I was ecstatic that I would no longer have to deal with periods!
Fast forward to December 2013. After discovering that my gynecologist was no longer with the practice, I made my appointment with the nurse practitioner, as the other gynecologist was not available at my appointment time. Being that it’s usually necessary to schedule months in advance, I did not want to wait and reschedule my appointment. I underwent the normal exam and pap. Afterwards, the nurse practitioner explained to me that she had reviewed my file with the other gynecologist. They both felt that with my diagnosis back in 2011 of complex hyperplasia with atypia, that I should have also had my cervix removed at the time. I was referred to a gynecologist/oncologist to review my file and be examined.
In January 2014 I met with the GYN/ONC. He explained that because during LSH surgery a portion of the endometrial lining remains with the uterine stump that is connected to the cervix — and that the lining could contain the same pre-cancer cells as the uterus — that it was in my best interests to have my cervix removed. The fact that I had had all normal pap tests after my 2011 surgery would not indicate that I was “safe.” In addition, since my paps had shown the presence of glandular cells, that meant the endometrial lining was still active. The GYN/ONC said he saw no reason to remove my ovaries unless cancer was present and made that notation in my file.
My surgery was scheduled for April 10, 2014. Twenty minutes prior to being wheeled into surgery, the GYN/ONC came to speak with me. I reminded him that we had discussed preserving my ovaries unless cancer was present. Imagine my shock when he informed me that, in fact, cancer had been present. He informed me that when his pathologists had reviewed the slides of my uterus from the 2011 surgery, they discovered that I had actually already had uterine cancer (adenocarcinoma). Because my uterus had been removed in pieces, it was possible that cancer cells could have been spread to other areas. It was for this reason that he would be removing my ovaries and fallopian tubes along with the cervix. He was not sure at that time whether he would have to remove any lymph nodes until he saw what he was dealing with. Needless to say, I was in a state of shock. But I knew I had to do what he recommended, because I certainly didn’t want to risk cancer being present in any of my other reproductive organs.
When I woke from surgery, I was relieved to find out that when the doctor had done a test of the tissues during the surgical procedure, it came back negative for cancer. Based on the pathology and his thorough investigation during the procedure, he had not felt it was necessary to remove any of my lymph nodes. Even more of a relief is when they called me several days later to let me know that everything he removed during the surgery was cancer free. Because of this good news, I did not have to have any chemo or radiation treatments. However, for the next five years I must be examined by the GYN/ONC instead of my regular gynecologist. During the course of the next two years, I must be examined by the GYN/ONC every three months to make sure I don’t show any signs of cancer appearing elsewhere.
I cannot express how terrifying it was to go through this. Though I know I am not out of the woods yet, I believe there is a low risk of my developing cancer elsewhere that would be associated with or a result of the uterine cancer.
I realize how extraordinarily lucky I have been up to this point. I have read about other women who have had a power morcellator used on their uterus based on pre-surgery testing that indicated they were “safe”, only to find out afterwards that they had a cancer far worse than mine that has now been spread throughout them. These are women who had numerous types of tests such as endometrial biopsy, ultrasound, MRI, etc., that came back with benign results indicating it was perfectly safe to cut the uterus apart to remove it.
I am sharing my story because women need to be informed of the dangers of this procedure. Yes, we are warned that if cancer is present the uterus cannot be removed in pieces. But the fact is, in far too many cases, there is no way to positively diagnose that there is not already cancer present! If they had been able to diagnose that I had cancer with the endometrial biopsies I had prior to my 2011 surgery, I would have had a traditional abdominal hysterectomy to remove my uterus intact. I would have gladly endured the longer, more difficult recovery instead of having to worry every time I go to the GYN/ONC that they are going to find cancer somewhere else. Though of lesser importance, I would also not be going through menopause right now because of having to have my ovaries removed.
I fully support each woman’s right to decide for herself if morcellating the uterus is the right procedure for her. But only if they are properly informed of the chance that their benign condition may, in fact, already be a cancer that could be spread and possibly be fatal to them. Until they can accurately, 100% without a doubt tell a woman that she doesn’t already have cancer, or until they find a way to morcellate the uterus in a safer manner that would not spread cancer cells, I urge any woman who will undergo hysterectomy to examine all the risks associated with morcellation.