My Story | Georgia P., Massachusetts, USA
Hi, my name is Georgia. I am almost 60 years old, living in a suburb of Boston, Massachusetts. Married more than 40 years, I have two daughters and three grandchildren.
In June of 1997 I was diagnosed with endometrial cancer, which turned out to be stage IIIC. It came as a complete surprise to me, despite the fact that my mother had also had the same type and stage of cancer almost 20 years earlier. At that time people did not use the term "cancer" except in hushed tones behind closed doors. So much for awareness! She had a "tumor", "treatment" (radiation) and surgery (a hysterectomy done by a general surgeon) at the age of 75 and lived another 10 good years.
By comparison, my cancer was discovered when I was 57 years old. After an uneventful menopause, I had a few episodes of unexplained heavy bleeding at age 52. My internist referred me to an ob-gyn who did an endometrial biopsy. He told me I had fibroids and recommended he remove them laparscopically. He was young, very experienced, and yet never mentioned the possibility that this bleeding could be indicative of cancer. Since I had opted not to take HRT, my internist and I discussed the fibroid issue, and she agreed that, with diminishing estrogen, the fibroids would probably shrink and we did not need to do anything more about them. She also did not mention that bleeding could be a symptom of cancer.
Medical history was simple two daughters born when I was in my early 20s, history of overweight, but no other major medical issues. I did most of the right things (well, I did smoke for a while) and was moderately active, worked full time, while spending my spare time involved in hobbies (raising and exhibiting basset hounds for 20+ years, for one) and community activities. I did develop borderline high BP after menopause, for which I was given medication. I also began to concentrate on low-fat cooking and eating, and a healthier lifestyle.
Five years after this biopsy, I had another period of heavy bleeding, which did not resolve in a few days. I saw the internist, who again referred me to an ob-gyn. I had been having regular Paps done by the internist, which were always normal, but a Pap is not a diagnostic tool for endometrial/uterine cancers.
This time I chose a different ob-gyn (Dr. H), based on his medical resume, his youth, and surgical skills. I consider that one of the luckiest things I ever did! When I called for the appointment, his receptionist asked the reason for the visit, and when I told her about the bleeding, she had me come in within a few days. He talked with me, examined me, and did another endometrial biopsy. He also gave me some progesterone (Depo-Provera) to see if it would help with the bleeding (which it did not). I was told my uterus was the size of a first trimester pregnancy ..so I foolishly assumed the fibroids were still there and I mentally prepared myself for a laparascopic procedure to remove them. Little did I know what lay ahead
About a week later, the phone rang and Dr. H said he had the results. Then he said "you have cancer". I will NEVER forget that moment. I was totally stunned, and probably missed 90% of whatever else he told me. He did insist I come in the next day for another visit and biopsy, and that I should bring my husband. I remember telling him it was not a convenient time for me to have surgery, and making a few other nonsensical comments
I logged onto the internet immediately and thus began the quest for information, difficult to find at first since I did not know the terminology of cancer. But by the time my husband came home I had amassed enough information to know it was a serious situation, and when we went in to see Dr. H the next day, I thought I had my "ducks in a row". He showed me the biopsy report, adenocarcinoma of the endometrium, well differentiated, probably Stage II. He did another biopsy, and told me he was going to send the tissue to several labs, and then he told me I would need a referral to a Gyn-Onc (a what???).
Whoa! Now I was really confused. And I did not want to go to Boston or Providence. But, from that foggy mist which was my brain that day, I did manage to pull the name of a local and highly respected surgical oncologist (Dr. R) who is associated with the local hospital where area cancer treatments are handled (chemo, radiation oncology). We agreed that Dr. R and Dr. H could do the surgery together, and it was scheduled for a few weeks from then. I did have a consult with Dr. R, who ordered an MRI for more staging purposes, and explained the surgical procedure to me, gave me my bowel prep instructions, and assured me after the exam that it seemed very treatable to him. He also told me the final staging would be done during surgery, and I would have a vertical incision so he could examine me thoroughly while he was dissecting lymph nodes, checking the intestines, and sampling the abdominal fluids (washings, I believe it is called).
I was scared, but I sensed I would make it through this OK. My husband was an incredible rock for me. The several weeks before surgery were some of the best of our marriage. I got my affairs in order, and when I entered the OR, I was at peace with my life and what was about to happen to me. The next thing I remember was waking up to the good news that everything had gone well, and the lymph nodes seemed clean. (See the FAQs section for detailed discussion of a hysterectomy, what to expect, recovery, etc.).
So blissfully I went back to Dr H to have my staples removed 10 days later. He seemed distracted when I asked a few questions. Then he told us that they had found minute involvement in one of the (removed) nodes, and the recommendation was for pelvic radiation, 5 weeks external and an internal "implant". I had done some reading on this issue when I was first diagnosed, so I had an idea what was involved. And I was not happy! I was given an appointment with a radiation oncologist for the end of that week. Seems I was now a Stage IIIC.
The radiation oncologist (Dr. P) was wonderful! He spent a lot of time discussing the options with us, and it was clear I would be foolish not to proceed. I was terrified of the internal part, but managed to get through it (again, see the FAQs for more on this subject). The external treatments were not that invasive, and side effects were minimal (except for the intestinal effects, which to this day plague me at times). The worst part for me was the loss of dignity, and utter embarrassment during the treatments, even though I insisted on female techs. If it had not been for the support my husband provided, I would have had a more difficult time with it all, as we were able to remain intimate during the entire treatment process, giving me happier things to focus on!
At that point I still had not found an on-line support group. Local groups were devoted to breast cancer or general cancer, and the intimate details of my gyn cancer and treatment were not subjects I felt like discussing in mixed company, face-to-face. I continued to surf the net daily in search of information and others with gyn cancers, just to "talk" to someone in the same situation. I did find an on-line discussion list, but found it after the fact, so I could not ask my questions when I needed to, before the treatments. However, just being able to "talk" with others who were dealing with the same issues and treatments was wonderful, and I made life-long friends at the same time. Finding SURVIVORS of endometrial cancer was the very best part! I did not face the emotional issues younger women face when dealing with hysterectomy and its related effects, and all I hoped to find was that there were survivors whose quality of life was not lessened by the surgery or treatments .
A final note . Given my initial lack of awareness of the symptoms of endometrial cancer, I knew I had to alert my sisters and daughters to the fact that genetically they also were at risk for this cancer. I gathered copies of my medical records, printouts of the PDQ statement from the NCI web site, and various other useful information, and made up packets which I gave to both my sisters and both my daughters. My radiation oncologist was able to find my mothers medical records which confirmed that she and I had the same stage and type of endometrial cancer.
Driven as I am to have "the best information" I can find, I was delighted when given the opportunity to participate in this community. We are committed to trying to provide the information, from A-Z, that a woman needs when first told "you have cancer", and to provide the support which is not usually available in general local groups. This is a primary reason I remain involved, even as I have passed the two-year mark in which recurrence is most likely. I am proud to be involved in this Eyes On The Prize community of women reaching out to other women!