Rann’s Frequently Asked Questions

1ST CERVICAL/UTERINE CANCER
Q: What kind of cancer did you have, and how old were you?

In 1983, at 26, I was diagnosed with a stage IIb cervical/uterine cancer. Surgery was done to remove all but my right ovary, which was tacked up to keep it from being harmed from the radiation.

The surgery was successful, the cancer had not spread, and there was not even one positive node out of 50 that were removed between my groin and breast areas. I took part in a research study, at my surgeon’s request, where if I had 1-3 positive nodes, I would have NO radiation. However, the tumor was very large and in close proximity to vital organs, so the oncology department decided to override the study protocol, and invoked radiation treatments to follow. They felt my chances for a good outcome were better that way, and even though I was unhappy about it, I was glad they cared enough about my life to make the change.

CAUSE
Q: Do you know what caused it?

Yes, to an extent. I was born a twin, I have a brother, and we were born prematurely. I am not sure if that was the reason or not. At 16 years of age during my first gynecological visit, I was told the mouth of my uterus had not developed properly and that it should be removed. A few years later cryosurgery was done but it didn’t help much.

WHERE
Q: At which hospital were you operated on, and who was your doctor?

I was operated on at UAB (University of Alabama Hospital in Birmingham). My hometown is Gadsden, Alabama, which is an hour north of Birmingham. My surgeon was Dr. Kenneth D. Hatch, Ob-Gyn Oncologist.

TREATMENTS
Q: Did you have radiation and chemotherapy?

I had seven weeks of radiation to the front and back of my pelvic area. Since I had no positive nodes, chemotherapy was not invoked as a therapy for me at that time.

SIDE EFFECTS
Q: Did you have any side-effects from the treatment?

I took the radiation treatments well, as I was young and in otherwise good health. However, the doctors did a lot of exploratory surgery on me because of the study, so at the end of the radiation treatments, I was feeling very raw inside and out. I had lost some weight, and weighed just 103 lbs. so I ate often. Having the treatments in an area so far below my mouth and stomach, it didn’t affect my taste or appetite as much. I did lose a good bit of my hair due to side effect from anesthesia.

REFUSED RADIUM IMPLANT
Note: I refused the radium implant. I had not been made aware of this part of the treatment by my doctor. I found out through a third party. I was mortified by the thought of it, and knew it would ruin me, so I stubbornly refused it. My radiation doctor added an extra week to my treatments. By the end of that last week I had radiation burns on my affected areas. Thankfully, the techs told me at the start of the treatments to put Vaseline Intensive Care lotion (extra strength, no smell) on the front and back, before treatments, which I did, and I do believe it saved me.

LYMPHEDEMA
Q: Did you have any more side effects?

Yes. I slowly developed lymphatic edema (lymphedema) in my groin and legs. However, it didn’t become chronic until three years later, in 1986. I walked a lot at my job during those first years, so movement and exercise helped. But when I changed jobs and started sitting at a computer all day, the fluid started pooling in my feet and legs.

WORKING WITH LYMPHEDEMA
Q: How did you cope with the lymphedema while working?

My uncle just happened to work at a durable medical supply company, and told me about compression stockings. I had never heard of them before. He told me he thought they would help me. I wore a custom made full-length Jobst garment. Later I tried open crotch, to get air, and open toe, which I liked, but the open crotch made the swelling worse at my groin. I’ve stayed with the open-toe design ever since, to get more air flow. It’s healthier for your feet and toenails.

MEDS
I was also prescribed muscle relaxers. The intense interior pressure was beginning to take a toll on my nerves. Over time, I had to learn to adjust my life. I had to set absolute parameters, because I couldn’t do all of the things I had done before on a “whim”. I didn’t look sick, or even changed. And most people, even family, didn’t realize how hard my life had become.

ADJUSTING WORK AND LIFESTYLE HABITS
It took me a long while to realize that I had to adjust my work habits. I usually would work on a project until it was done, but with lymphedema, I would get irritable and feel emotionally upset, not realizing why and later understood that my body was not the same, so I had to take more brakes, and move my feet and ankles in circular motions while I was sitting. As the saying goes, “it was hard to wrap my brain around”!

SIDE EFFECT - GROUP B STREP INFECTIONS
This side effect was caused by the lymphedema. It would start in my pelvic area. A red rash would develop on my tummy and my groin would begin to ache, my legs would turn red, and within an hour I would be in the ER on IV antibiotics, pain meds, and fluids, usually for about 5 days average. This went on for about three years, usually onset by fatigue or an emotional crisis. In 1988, after moving to Fort Dix, New Jersey, I was admitted to the post hospital after two straight bouts with it, and became gravely ill. I woke up in ICU on a heart monitor. My Internal Medicine Doctor sent me to Walter Reed in Washington for tests. After eleven days of extensive tests, my doctor told me that I had developed Rheumatic Fever. He said nothing could be done except to put me on low-dose penicillin for preventive maintenance (which I still take), and to keep stress out of my life at all costs. They determined that the long horizontal scar, the extensive surgery and radiation, had blocked and seared the delicate lymphatic vessels.

I have been retired since 1995, but have kept up the same routines to manage the lymphedema issues. I see a General Practitioner for overall maintenance and referrals.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Go to Basics/FAQs/ Rann’s FAQs - Thyroid Cancer
For information regarding my experience with Thyroid cancer, and the continuing sage of everyday maintenance, and Tips on skin care with lymphedema, including staying cool, and caring for the feet!