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CancerLynx - we prowl the net
January 6, 2003

Prostate Surgery Followed by Lymphedema
Stephen Sousa

Upon returning home from a ten-day vacation in the Turks and Caicos in January 2001, I had an appointment with my primary care physician in Concord, MA for my annual physical examination. These examinations generally went extremely well since I was a 47 year old male in excellent physical condition. My only health issue was that I was taking medication for was elevated cholesterol.

The physical exam started with an EKG, the in depth questions; the last portion of the exam was a Digital Rectal Exam (DRE) to check the Prostate for any lumps or changes in the gland. Fortunately, my physician found a small growth on the Prostate, which led to a follow-up exam with the Urologist in Boston. The earliest appointment that was available was in March; this didn't concern me since my primary care physician didn't seem overly concerned. Between that date in January and the follow-up with the Urologist, I requested that I have a PSA blood test performed to establish a baseline. The result was amazingly low .6, with this number I felt there wasn't anything to worry about.

The month of March finally approached and also the scheduled appointment with the Urologist. The Urologist and I went through a number of health related questions and he also performed the (DRE) finding the same small lump on the Prostate. The Urologist was not concerned since the PSA was a .6 and provided me with many options, watch and wait which meant I would have a follow-up exam every 6 months or I could elect to have a needle biopsy. I elected to have the needle biopsy that would either rule out cancer of the Prostate or provide the answer no one wants to hear. The needle biopsy is when the Radiologist inserts a probe in the rectum, which identifies the tumor, and a needle is inserted into the center of the probe, which removes samples of the tumor. At a young age of 47, I decided to have the needle biopsy and hopefully this test would prove the growth was benign and continue with life as usual. The needle biopsy was performed on an Outpatient basis, the Radiologist couldn't find the growth with an ultrasound, and I was starting to feel confident that the growth was not an issue. The Urologist guided the Radiologist to the area where the growth was felt and removed 6 samples. This test was not complicated or painful. I returned to my office that afternoon following the procedure and resumed a normal workday.

The Urologist estimated that the results of the needle biopsy would be available within a week. The first week passed and the results were not available, the second week had passed and the report was not available from Pathology, I had a feeling that something was found which required further testing in the lab. The results became available in two and a half weeks, the report identified a growth on the Prostate as cancer, and this is something no one ever expected. The next step would be a follow-up with the Urologist to discuss the many options. Once the diagnosis was cancer of the Prostate my wife and I met with the Urologist, I was provided with a few options

(1) Wait and Watch (requires a follow up with the physician every six months which evaluates growth of the tumor)
(2) Radiation Seeding
(3) Beam Radiation
(4) Prostate Surgery (removal of the Prostate).
I chose surgery, feeling that we would remove the Prostate with the tumor and have a greater chance of survival with the least complications. I reserved a surgical date with the Urologist in Boston and was comfortable with that decision. I asked the Urologist to provide a list of patients that I could discuss the procedure and the doctor's success rate over the next few weeks. That contact information was provided and I did contact a number of his patients. One comment the Urologist made upon leaving his office bothered me, "I would not do to much research, this could make you confused and you could make the wrong decision." This comment made me do more research then I would have performed normally. I began reading articles and books on Prostate Cancer and became an educated consumer. I contacted some of the references provided by the Urologist that had undergone surgery to find these patients were either incontinent and/or impotent neither issue I wanted to deal with at such a young age. I continued to do research on Prostate Surgery and related procedures; many medical professionals I discussed Prostate Surgery with came back with the term have surgery done by a doctor that does Prostate Surgery all the time

I chose the Mayo Clinic for surgery; they have an excellent reputation and my surgeon is a full Professor in Urology at the Mayo Clinic. The surgical date was scheduled for September 18th, due to the circumstances that occurred on September 11th my wife and I had to drive from the Boston area to Rochester, MN. Surgery occurred on schedule and I was discharged on September 20th. The surgeon requested that I have two follow-up visits on September 21 and 22nd before flying home. We had to stay in Rochester over the weekend and flew home on Sunday, September 23rd. I visited another Urologist in Boston that had volunteered to take over the case following surgery, the drains were removed one week after surgery and the catheter was removed in the third week.

Lymphedema What is Lymphedema?

Swelling began in the inner upper thigh area when the catheter was removed. I began to correspond with my surgeon at the Mayo Clinic; he felt I either had Lymphedema or a Deep Vein Thrombosis (DVT), which is a blood clot in the leg. I received an Ultra Sound which checked the leg for a (DVT), the results were negative. I could find the term (DVT) on the web, which provided excellent detail that explained this condition. On the other hand, information about Lymphedema was difficult to find and very little information was available on the web at this time. I made an appointment with my primary care physician, he felt that the swelling was part of surgery and would eventually subside during the healing process. Within the next two months the swelling spread down the inner thighs and walking became uncomfortable, I knew that I had Lymphedema. The issue was to find someone that understood Lymphedema and who could treat this disease. I found a local hospital in Boston that treated Lymphedema, I contacted the Lymphedema Therapist who described a process called Manual Lymphatic Drainage, in most cases would reduce the swelling and move the lymph fluid. I had a consult with the therapist and the physician managing the Lymphedema Program. Yes, I did have Lymphedema and fortunately it was diagnosed before getting out of control. Lymphedema is a collection of Lymph Fluid in the skin that isn't carried away by the blood vessels, this can occur from birth, injury and also from the treatment of Cancer, as in my case.

The treatment for Lymphedema was a three-week process that required visiting the therapist each day for a Manual Lymphatic Drainage (MLD) and wrapping that leg with special foam and bandages prior to leaving the hospital. The therapist treated the worst leg first (right) and worked on the other leg during the second week. The remaining visits were required for measuring compression stockings and getting the correct fit. I currently use the stockings each day, perform the (MLD) in the evening and wraps during sleep as required. The constraints of Lymphedema have an effect on your life style, the swelling seems to be aggravated by the heat and humidity and extreme cold.

The swelling has remained in a controlled state and I am very concerned with diet and following my therapist and physician's orders. Unfortunately, Lymphedema isn't widely known by many physicians and in some cases misdiagnosed. My physician does review Lymphedema as part of her lectures to medical students that will assist patients in future.

I live a normal life with Lymphedema; my lifestyle involves sailing, scuba diving and working out at the gym. I cannot lay on a beach all day due to the risk of sunburn and swelling from the heat. I started a Yoga Class 12 months ago, which seems to help with lymph flow. In retrospect, I feel very fortunate with the early diagnosis of Cancer and the results of Prostate surgery. I hope this article helps someone with Cancer, Cancer Treatment or Lymphedema. A patient should be his or her own advocate and ask any questions that you feel are necessary to aid in your cure or life style.

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