An experience with

Testicular Cancer


    This page is not intended to substitute for expert medical evaluation or treatment.

    Instead, I am sharing with you what I learned as a cancer patient, about how to advocate for the best possible treatment of not only my cancer, but of all of the conditions, questions, and decisions associated with my cancer.


    I am going to speak bluntly and honestly about my experience, because I remember how much I wanted to be able to connect with someone who could tell me what I was going to experience with my cancer.

    Your experience may not be just like mine, but you and I both know the emotions of (1) learning that one has cancer, and (2) specifically learning that there is a cancer in one's testicle. It's not a life experience that any man would choose, but it helps to know that other men have experienced it, and therefore understand what you are feeling.

    I'm sure that most physicians understand. On the other hand, the first urologist I saw dismissed my efforts to discuss the psychological aspects of testicular cancer and surgery ---- even though I am a psychologist.

    Sigh .....

    But, I'm not offering psychological services. I'm offering the understanding of someone who has been there. So, I'll be happy to share personal info and support for anyone who is concerned about testicular cancer, testosterone levels, and/or testicular implant. In addition to the obvious medical concerns addressed by your medical team, there are important practical, emotional and psychological issues for men dealing with cancer of the testicle.

    I had surgery for testicular cancer. My tumor was a stage I seminoma. I have finished the course of radiation therapy. And, my CT scans and other tests recently indicated that I am still cancer free.

    And ...... believe what they say about the importance of monthly testicular self-exams for men, and breast self-exams for women and men. -- I found my own tumor.

    So, I'll be glad to communicate with anyone who has concerns about facing testicular cancer, testicular implants and/or testosterone level.

    Just send an e-mail to me at:


First, Here's My Story

    In the case of my own cancer, I had been telling myself for a long time that "One day I'm going to do one of those testicular self exams that men are supposed to do. One Sunday in December of 2003, after a shower, I finally decided to check.

    My left testicle felt normal -- rounded, smooth and soft. But something was different about my right testicle. I felt a hard lump, about the size of a garden pea, on the front side of the right testicle.

    It was a Sunday, so I couldn't contact my doctor that day, but resolved that I would call him the next morning. As the day went on, I read about testicular disorders on the Internet, and realized that I might have testicular cancer.

    The next morning I repeated the self exam -- hoping that maybe I had been wrong. But, no, the lump was still there. I called my physician's office, and they gave me an appointment for later that week.

    While waiting for the doctor's appointment that week, I didn't tell anyone about the lump. I didn't know much to tell anyway, and I needed to sort things out in my own head before I was ready to help someone else understand.

    When the appointment finally came, my physician acknowledged that the lump could be problematic, and said that I would need to see a urologist promptly.

    The first urologist that I went to ordered an ultrasound image of my testicles, to get an initial view of the problem. That procedure was not at all uncomfortable, and I was beginning to get desensitized to a growing number of medical people viewing and feeling my infected testicle.

    The ultrasound image suggested that the tumor was probably a seminoma, and in the rare cases where someone as old as me gets testicular cancer it is usually a seminoma. That was a little comforting, because seminomas are at least the slowest growing of the testicular cancers. On the other hand, we had no idea how long I had actually had cancer, and the infected testicle had atrophied.

    I went home and studied even more on the Internet, and in books I had purchased about cancer and testicular cancer. I also scheduled an appointment with a second urologist. The second urologist agreed that the lump was probably cancer. I ended up staying with the second urologist, because I felt more comfortable with him.

    At the time that I initially discovered my tumor, I had no pain or discomfort. But by the time I saw the second urologist I was having some continuous discomfort. It was not unbearable pain by any means, but a discomfort that never really let up.

    Every man is familiar with occasionally feeling discomfort when his testicles are positioned wrong in his clothing, and he hopes that no one notices as he tries to subtly move them. It felt like this, all the time. There wasn't a comfortable placement anymore.

    The day of surgery came. The procedure is called an inguinal orchiectomy, and involved an incision in the lower abdomen so that the diseased testicle and related spermatic cord can be pulled up through the lower body. It seemed that it would have been a much simpler procedure to go through the scrotum, but they explained that they needed to get the spermatic cord that extended up into my lower abdomen, since that area was most vulnerable if the cancer had spread.

    I had a testicular implant done at the same time, because I didn't want to have a separate period of recovery for this second procedure, which did involve a small incision in the scrotum.

    After having some time to heal, I had CT Scans (pelvic and abdominal) as well as chest x-rays, to see if the cancer had spread. The lymph nodes were all clean, which was wonderful news. However, the abdominal CT Scan revealed a tumor on my right adrenal gland. The radiologist who interpreted the x-ray suggested that this new tumor could be metasthesized testicular cancer. The urologist didn't agree, but said it could be a separate adrenal cancer.

    Well, I started reading again, and learned quickly that the prognosis for adrenal cancer is much less optimistic than the prognosis for testicular cancer. That was the first time that I seriously considered that I might be terminally ill.

    I next had an MRI and laboratory tests. The MRI interpretation suggested that the adrenal tumor probably is not cancer. However, the laboratory tests revealed various hormones out of balance, and my urologist suspected that my adrenal tumor is probably a functional tumor, meaning active and causing problems, but not malignant.


    So, the next step was to see an endocrinologist. Again, I got opinions from 2 endocrinologists, and went with the second one. By that time, my blood tests were all normal except for testosterone level, which was slightly below the criterion for hypogonoidism.

    I began regular testosterone injections and was amazed at how quickly I felt better.

    • My energy returned.

    • I was able to stay awake all day.

    • My depression lifted.

    • My hot flashes stopped.

    • My mood stabilized.

    • I was able to use my muscles more normally in every day activities.

    • My libido returned to normal.


    Interestingly, the hormone problem was the problem that took longest to resolve, simply because it took a while to find a physician who was knowledgeable about, and therefore not fearful of, testosterone treatment.

    That's sad, because all of the symptoms I mentioned above quickly went away when my testosterone levels were restored to normal.


    • I wonder how many men go on to live with unnecessary depression, fatigue, lack of energy, lack of strength, hot flashes, and suppressed libido because they encountered a encrinologist like the first one I saw, who told me that this issue "isn't a priority."



    • Do you suppose she would have said the same thing if it was her estrogen that was out of balance?

    • Guys, you don't have to accept a dismissal like that. Find a physician who is able to treat your symptoms, then get on with your life!


    Please note that depression and Cancer Fatigue Syndrome can cause many of the same symptoms as a low testosterone level.

    But, don't rule out the possibility that you might have more than one, or even all, of these. I did.


    Meanwhile, I was referred to a radiation oncologist, and went through a course of 17 radiation treatments to reduce the chance that the testicular cancer would spread into relevant lymph system. I was more fortunate than some radiation patients, as my medication did a good job controlling the nausea, and I didn't have any skin irritation. My main side effect was stomach cramps that became continuous after 2 weeks of treatment, and continued, around the clock, for about 3 weeks. Oh well, this too shall pass, right? It did.

    My adrenal tumor is apparently benign, and I'll have periodic CT scans and X-rays to ensure that the testicular cancer is not showing up in other places, and that there are not changes in the adrenal tumor.

    The average man has one chance in 450 of getting testicular cancer. My odds are now reduced to one chance in 20, since I've already had it once. But, it helps to look at the other side of the equation and realize that there are 19 chances in 20 that I won't get it again. I certainly feel better.

    If the cancer returns, it can show up in the lymph system, the lungs, the brain, or other body organs. But, treatment prognosis remains good, if the recurrence is found early.

    I have now had my 6, 12, 18 and 24-month tests and learned that cancer has NOT returned. That's as good as the news can get.



Some Facts


    Testicular cancer is the most common form of cancer for males between the ages of 15 and 35, but it can occur at any age.

    Testicular cancer is usually curable, but some men die from it. Early treatment greatly enhances the chances for a happy outcome.

    Men who were born with an undescended testicle have a greater risk of getting testicular cancer.

    Men who have a close male relative with testicular cancer are more likely to get testicular cancer.

    Caucasions are more likely than others to get testicular cancer.




    Some common symptoms of testicular cancer are:

    • A painless lump or swelling in either testicle
    • A change in how the testicle feels, such as a hardening of the testicle
    • A change in size of a testicle
    • A dull ache in the lower abdomen, back or the groin
    • A feeling of heaviness in the scrotum
    • A build-up of fluid in the scrotum
    • Pain or discomfort in a testicle or in the scrotum


    Less common symptoms of testicular cancer are:

    • Enlargement or tenderness of the breasts
    • Testicle is swollen and tender



    If you discover a symptom, keep your cool ......

      Although most testicular tumors are cancer,
      most testicular cancer can be successfully treated
      --- especially if treated soon enough.

      Early diagnosis of testicular cancer is extremely important.
      If testicular cancer is not treated, it will spread.

      Go to your primary care physician right away. He or she will then probably refer you to a urologist who has experience in diagnosing and treating testicular cancer.


Types of Testicular Cancer

    Among men less than 60 years old, 95% of testicular tumors originate in the germ cells where sperm are formed.

    These tumors are categorized into two groups: seminomas and nonseminomas (or, teratomas).

    About 40% of these germ cell tumors are pure seminomas, which are composed of immature germ cells. Seminomas usually grow more slowly, and spread more slowly, than other forms of testicular cancer.

    Nonseminomas are a group of cancers, which can occur together in various combinations, in the same tumor. Types of nonseminomas include choriocarcinoma, immature teratoma, embryonal carcinoma, and yolk sac tumors. Nonseminomas arise from more mature, specialized germ cells and they usually grow and spread faster than do seminomas.

    The other 5% of testicular tumors are usually leydig and sertoli cell tumors, but in rare case can also be PNET, leiomyosarcoma, rhabdomyosarcoma, mesothelioma and other types of tumors.

    Men older than 60 can develop germ cell tumors, but are more likely to develop leukemia, lymphoma, or a benign tumor called spermatocytic seminoma.

    But, when we are talking about testicular cancer, we are usually referring to the types most commonly seen, which are testicular germ cell tumors, including both seminomas and nonseminomas.

    My own tumor was a seminoma.



    Oh my word! -- Despite the fact that most testicular cancer is treatable if treated early, The Scotsman reports that only 3% of men regularly check their testicles for lumps.

    Only three percent!



Deciding whether to have a testicular implant

    Whether or not you want to replace a removed testicle with an artifical testicle, is your choice -- not your doctor's choice.

    Some men choose to have the implants and are happy with them. Other men choose not to have the implants and are at peace with their choice, too. Only you can decide what is important to you.

    The new saline-filled prosthetic testicles are FDA approved, and they don't carry the same risks as the old silicone-filled testicles. And, you won't have an extra recovery time if you have the implant done at the same time as the orchiectomy.

    Believe it or not, some urologists are uncomfortable enough with human sexuality that they actually try to dissuade men from having implants. You don't have to settle for such disrespectful treatment. It's your body. It's your life. They're your choices. They're your risks. Educate yourself and make your choices.




    This is a photograph of the testicular implants sold by Mentor at http://www.mentorcorp.com/index-aesthetics.htm

    Although the surface of the implant is silicone, risk is minimized by the implant being filled with a simple saline solution.

    If you decide to have an implant, you'll want to talk with your urologist about which size you want.




Testosterone Level




  • The Testicular Cancer Resource Center has noted that between 10 and 30% of men having orchiectomies will have a problem with testosterone or LH levels after the surgery. I did.

  • You may have trouble finding a physician to help you if you discover that the cancer or the surgery has left you with a lowered testosterone level.

    I was having several classic symptoms of low-testosterone such as fatigue, depression, concentration difficulties, hot flashes, lack of energy, lack of strength, lack of libido.

    But, you might never know your own healthy baseline for testosterone level, because if you have a level checked before the surgery, your cancer may have already lowered your testosterone level. Unfortunately, no one has a testosterone level done when they are healthy, and an optimal level may vary from man to man.

    During this period of time I had two testosterone levels done at labs. One showed a result of 291 ng/dl and the other showed 290 ng/dl. Believe it or not, both a physician and an advanced practice nurse, told me that these results were normal.

    Fortunately, I had done enough reading at this point to know that levels below 300 ng/dl qualified one for a medical diagnosis of hypogonoidism. I also had found several sources indicating that my level should probably be within the range of 600 ng/dl to 900 ng/dl.

      NOTE: Physicians often look nervous when you mention testosterone levels, worried about things such as ---- if you should ever get prostate cancer, testosterone makes that cancer grow faster.

      Yeah, and if you restore a crippled man's ability to walk, you may have increased his chances of getting hit by a bus, but I'll bet he'd still elect to have his legs restored.


    Again ......... It's your body. It's your life. They're your choices. They're your risks. Educate yourself and make your choices.



Some Tips
from one who's been there



  • There are competent, sensitive and enlightened physicians out there. Find them. The first Urologist I saw dismissed the idea that a man might want an implant to replace the diseased testicle, and the first Endocrinologist I saw did not consider testosterone level a priority, despite my significant symptoms.

  • Rather than accept those patronizing attitudes, I found progressive physicians. With the implant to replace the diseased testicle, my scrotum now looks like it did before the cancer and surgery. I now get an injection of 125 mg. depo-testosterone every week, and I am alive again.

  • Read. Ask Questions of a well-informed physician. Ask questions of somene who has already faced these questions and choices in his own life. Make informed decisions. It's your body. It's your life. They're your choices. They're your risks. You are employing the physician. Employ one who will respect your wishes.


  • Before the day of your orchiectomy, ask your urologist to go ahead and give you the prescriptions for pain medicine and antibiotics, so that you can get them filled ahead of time. This will prevent you from having to go to the pharmacy after the surgery.

  • Have a testosterone level drawn before surgery, in case you have a drop in testosterone after the surgery and need to know your pre-surgery level.

    But beware ---- My level was already lowered before the surgery, apparently because of the cancer and atrophy of the cancerous testicle. Unfortunately, no one has their first testosterone level drawn until after they've had a testicular problem or until after they're already showing symptoms of low testosterone level.

My Experience with Testicular Implant

    Before the surgery, I wondered if my implant would look and feel real?

    Actually, my scrotum looks exactly the same as it did before the surgery.

    In fact, I can't even see the incision scar.

    I've been very pleased about that.

    Now, I can tell some difference in how my real testicle feels compared to my artificial testicle.

    The artificial testicle feels harder to the touch. And, it occasionally feels slightly uncomfortable to have the plastic sphere pressed against my body.

    But, that has been easy to deal with.

    • I have started to wear boxer shorts instead of briefs, to avoid that feeling.

    • At night, I tuck a bit of the blanket between my knees when I lay on my side, which is all it takes to prevent that pressed feeling.


    Again while acknowledging that different men make different valid decisions about testicular implants, I want to note that in my case, I am quite happy with my implant. Yes, there was pain from the implantation surgery, but I was hurting anyway from the orchiectomy. And, yes, it does feel a little different than my healthy left testicle.

    Do I feel okay about losing one of my real testicles?

    No, frankly I don't. But, the implant helps in how I feel about the loss. My personal sense of well being and normalcy is enhanced by having things look the same as before, and I've had no complications at all.

    I'm glad I decided to have the implant, and I'm also glad that I had it done at the same time as the orchiectomy, so that I only had one period of healing from surgeries.

    My oncologist has suggested that my urologist should have hung my artificial testicle a little lower.

    And, when the urologist couldn't exactly match the size of my healthy testicle, he chose a size slightly smaller, rather than slightly larger for the artificial one. (I would have made the opposite choice --- heck, if one has to go through this, you might as well get as big a one as possible. Smile.)

    But, that's not too big of a concern since most men's testicles hang at different points, and most men's testicles are slightly different in size.

    Now, implanting an artificial testicle does hurt for a while ---- but it gets better quickly. In my case, I was hurting anyway from the orchiectomy, so I was glad to get both hurts over with at once.

    An inguinal orchiectomy does not interfere in sex drive or function ---- although a drop in testosterone level does. Most men don't even have the testosterone problem. I was just one of the unlucky ones whose healthy testicle did not start producing enough for both testicles. I don't know why. I've wondered if my level dropped so gradually with the cancer that my other testicle was never jolted to take over.

    Now, if the cancer has spread into the lymph nodes, requiring a more extensive surgery called RPLND (Retroperitoneal Lymph Node Dissection), some men do experience an interference with ejaculation, but even they don't lose function in terms of arousal, erection and orgasm. And as for the ejaculation issue, some urologists are using a cautious procedure to avoid even that effect.

    Now brace yourself for some swelling. But, that went away soon, too.

    I'm glad that I had the implant, although there are plenty of men who didn't have an implant who are also happy. It's a very individual decision. I decided that it did matter to me to have my scrotum look and feel as much as possible like it did before the cancer and surgery.

    The first urologist I saw doesn't like to do implants and tried to disuade me, telling me that I "wouldn't know the difference." I found a new urologist.

    Most important, I'm a cancer survivor and I'm feeling good.


    Some men may feel shy or embarassed about having a physician examine their testicles,

    or about having any kind of problem with their sex organs.

    Don't die of embarassment!

    Check out these famous mens' stories .....

      Anyone can get testicular cancer ...

      At 25-years of age, Lance Armstrong was a world reknowned cyclist, having won the World Championships, the Tour Du Pont, and multiple Tour de France stages.

      However, Lance initially ignored the symptoms and by the time Testicular Cancer was diagnosed, his cancer had spread to his abdomen, lungs and brain.

      Nevertheless, his treatment was successful, and he has founded the Lance Armstrong Foundation to help others who develop testicular cancer.

      Lance was treated right here in Indiana, at the Indiana University Medical Center, which is recognized for leadership in the treatment of testicular cancer.

      Lance Armstrong won the Tour de France after being treated for testicular cancer.



"Understand that it will be a hard episode in your life.

Understand that the treatment will try to defeat you and damage your spirit.

But you can fight back and win."


-- Scott Hamilton

Gold Medal figure-skating champ

diagnosed with testicular cancer (nonseminoma)
in March of 1997

he had an orchiectomy and retroperitoneal lymph node dissection (RPLND)
and he received chemotherapy.

Scott Hamilton Cares Initiative






MSNBC Chief Legal Correspondent, Dan Abrams, is another public figure who has been courageous in sharing his testicular cancer experience in hopes of helping other men achieve early detection.

The handsome and popular newsman was moved by the death of sportscaster Sean Kimmerling from testicular cancer at the same time that Dan went through successful treatment.

Dan has since alerted others about this example of the difference that early detection can make --- both in reducing the severity of treatments required and in successful treatment outcomes.

I am grateful to heroic men like Dan for the lives that he has saved with his public efforts to alert other men of the need for self-exams and early intervention.

Dan's tumor was a nonseminoma type in 2003. He had a second surgery, a retroperitoneal lymph node dissection (RPLND).

Learn more about Dan's journey at http://www.msnbc.msn.com/id/5952314/.


John Kruk


first baseman for the Padres, Phillies and White Sox


diagnosed with testicular cancer in 1994

His cancer was a seminoma
treated after surgery with radiation









Louie Aguiar

Punter

for

the Kansas City Chiefs

and the Greenbay Packers


Diagnosed with Cancer in his left testicle

in 1998


His cancer was a seminoma

He was treated after surgery with radiation










    We've come a long way since testicular cancer killed Chicago Bears running back Brian Piccolo, subject of the film "Brian`s Song," back in 1970.

    Actor James Caan starred as Piccolo in "Brian`s Song."

    Brian Piccolo's cancer was an Anterior Mediastinal Nonseminoma
    treated with surgery and chemotherapy




Links


Testicular Self Exam

  • The best time to do a self exam is right after a warm shower when the scrotal skin is relaxed.

  • Hold your scrotum in the palm of your hand to compare the size and weight of your testicles. While it's normal for one testicle to be a little larger, or hang a little lower, any big change in the size of one of the testicles could indicate a concern.

  • Examine each testicle gently with the fingers of both hands by rolling the testicle between the thumb and forefingers. (See diagram below.)

  • Look for a small lump about the size of a pea on the front or the side of the testicle.

  • A natural rope-like structure, the epididymis (see diagram above), is on the back and top of the testicle. Learn what it feels like so that you do not confuse it with an abnormal mass.

  • Complete this test each month, because early detection usually means a successful outcome.

  • Be sure to thoroughly check the front, sides and bottom of each testicle for lumps.

  • Promptly contact your physician if you find a lump.



    • I have had my 6, 12, 18 and 24-month tests (CT-scans, X-rays, lab tests) and learned that cancer has NOT returned. That's as good as the news can get.

      And, again, I'll be happy to communicate with anyone who is facing testicular cancer, or who is facing decisions about testosterone level or a testicular implant.

      Just send an e-mail to me at








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    Copyright 2008, Mark Ellsworth Hickman, PhD

    You are welcome to contact me at