Dear Reader,

If you have found this page, you have probably been searching for information specific to stage IIA endometrial carcinoma. Well, I have too, and that is how I began compiling this page. In reading this information, please remember that this is all my personal opinion. There are many more studies out there. I've tried to pick out ones that specifically note either Stage IIA as a separate group or ones that give information relative to recurrence. I've heard it said that opinions are like.... well, nevermind that.... Everybody has one, both an opinion and that other thing. I am not a doctor, I do not play one on television, and the medical papers that I am linking to are ones that I found helpful in MY decision-making process. They may or may not be helpful to you. These are not, by any way, shape or form, the only research topics out there.

I'm 43, have 2 kids and have been married to my high school sweetheart for the past 20 years. I was a very early bloomer and started having regular periods at 11yo. Our daughter was concieved naturally after 8 yrs of trying off/on. Our son, was concieved after 4 yrs of "more scientific babydancing thru chemistry". He was our "kidscicle" and miracle baby. He was a result of a frozen embryo transfer of a single embryo whom our RE named "Fred". We had less than a 5% chance of it working and it did! My uterus & cervix didn't behave during pregnancy and I had several major bleeding scares. He was born in 2000.

A little over two years ago, I started having uncontrolled periods. Sometimes it was just constant spotting in between heavy periods, other time my periods were lasting 3-4 weeks with a 1wk to 10-day break and they were "gushers" to say the least. I went to the doctors and was given some iron (I almost required a transfusion since my hemoglobin was 8.5) and they did a hysteroscopy. Apparently the inside of my uterus was all ripply (DH and I saw it ourselves in living color on TV). Next came the D&C. Everything checked out fine. I was told the D&C should help the problem. It worked fine for about 5 months.

Eighteen months ago, I started having those problems again and underwent a biopsy before going thru a uterine ablation. The biopsy again tested normal.

The ablation worked like a dream for almost a year. Then I had a funky period again and was on the phone to the dr. right away. He did a biopsy in August and put me on 30 days of 20 mg. progesterone. After I came back from vacation, he called me with the results "hyperplasia with a focal point of atypia". I was put on 20mg progesterone for 6 months and was told to schedule a rebiopsy at that time. I was scheduled (due to his vacation) for the biopsy on April 3rd, but had a yearly with him on Feb 22 and asked that he do the biopsy then. He did, and on Feb 24th I was told "hyperplasia is still there, but pathology saw some grade 1 cancer cells in the sample too". That was Friday afternoon, he wanted me in his office at 8:15 Monday morning. Thank goodness I asked to have the recheck early.

From the biopsy, I was officially diagnosed with endometrial carcinoma, Grade 1. That began a whirlwind of testing, pretty much something every week until my scheduled total abdominal hysterectomy (TAH), bilateral salpingo-oopherectomy (BSO), and possible para-aortic lymphandectomy in April of 2006 - exactly two days after my original rebiopsy was scheduled. The pre-op testing consisted of a catscan, barium enema series, bloodwork, chest x-ray and mammogram. My OB/GYN did the surgery with my GYN/ONCO on stand-by. He removed ovaries, tubes, uterus, cervix, AND most importantly, the cancer. The doctor told my husband that it looked good, still looked like Grade 1 and that they did not have to remove any of the para-aortic lymph nodes. The nurses in recovery said that they knew I was awake and aware when I started walking my fingers down my stomach to find out where my incision started and stopped.

I began my healing from surgery and found out at the first post-op appointment that, although it was still a Grade 1 cancer (well differentiated with less than 5% of the cells showing cancerous abnormalities), it was classified as Stage IIA. The cells had just started to invade the cervical mucosa (the connective tissue between the muscle of the cervix and the uterus), but had not invaded the cervical stroma (actual muscle of the cervix) or grown outside the uterus. The pathology report worded it as "superficial involvement", the myometrial invasion was less than 1/4 (23%, or 7mm of 31mm) at the deepest point and the pelvic fluid (also called cul-de-sac fluid or pelvic wash) was clear, lymph vessels were clear and the organs removed showed clear margins.

I had surgery on Wednesday morning and was released Friday morning. I was released from post-op checkups by my OB/GYN at only 4 wks. BUT, I had a huge decision to make - adjuvant internal radiation, external radiation, or vigilant followup appointments. My OB/GYN said since he wasn't a specialist and wanted me to talk to my GYN/ONCO.. My GYN/ONCO recommended "No Further Treatment - paps every 3mo for the first 2 yrs and every 6mo for the next 3 yrs". He sent me to a radiation oncologist so I could hear what he recommended. The radiologist told me "Of the 30 patients I've seen with stage IIA...." blah, blah, blah, You could do either vigilance, external, or internal (also called HDR Brachytherapy)". He DID NOT come out and tell me, even when asked, that radiation was a one-shot deal if it recurred locally - have it now as a precaution OR have it IF there is a recurrence. THAT I found out from researching on my own and asking my GYN/ONCO.

I began searching for ANYTHING on the web, anybody who had personal experience, anything that showed there was a true division between Stage IIA and Stage IIB patients that were studied. Usually all Stage II's and all grades are rolled into one group OR Stage II is totally left out of the study. I saw reports that said 719 women studied, 9 had Stage IIA, no definition of grade. My GYN/ONCO said that I was barely a Stage IIA with my grade 1, decent pathology report, and low depth of invasion. Many Stage II patients have more than 33% depth of myometrial invasion and/or have a higher grade (grade 2 = 6% to 50% of the cells showing abnormalities, grade 3 = >50%). Trying to make an educated decision as to what followup protocol I was going to use was going to be difficult. I likened it to playing Russian Roulette. I thoroughly trusted my doctors, my GYN/ONCO was in the administration of the Gynocologic Oncology Group, but I did not want to make a decision without thoroughly researching it myself. It was important that my husband and I felt comfortable with whatever option I chose.

The decision I made, to forego adjuvant radiation and be vigilant with quarterly checkups and paps (vaginal vault smear w/ DNA check), is a personal decision. It is based on the limited information I have found through medical journals, my own research on line (at reputable sites, of course), and through personal experiences of a few friends who have been diagnosed with various grades/stages of endometrial carcinoma. At best, I feel it's now an educated guess on my part, rather than a shot in the dark. My GYN/ONCO said that his estimate of my chance of recurrence is approximately 15%. Radiation could cut that in half, but then would be unavailable if needed for local recurrence. Medical research suggests that when recurrence happens after radiation, it happens in distant sites. In patients without adjuvant radiation, it tends to recur in localized sites.

When I'm watching "Who Wants to be a Millionaire", it always ticks me off when people use their lifelines for the easy questions. Well, radiation, additional surgery and possibly combinations of chemo drugs are my lifelines if there is a recurrence. I am constantly reminding myself that I am lucky! At least I have a rather low recurrence rate compared to some cancer patients who don't even have a recurrence rate to worry about. My father was one of those patients. I dedicate this page to him. I am going to do everything I can to get thru this as healthy as possible and try to beat the hand that I've been dealt - for myself, my husband, my kids, and my dad.

 

Read my collection of research reports pertaining to Stage IIA Endometrial Carcinoma.



Created Apr/May 2006.