I was lucky: Lance Armstrong's pre-existing condition

Lance Armstrong's letter of October 2, 2009:
Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don't know is that at the time, I didn't have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it's a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American.
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We'll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate.

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.

Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.

It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.

-Lance and the LIVESTRONG Action Team

Advice: Please sign the petition and forward it along to your friends and family.

Read another Lance Armstrong story. Thanks to Hari Khalsa for forwarding the email.

My illness was starkly revealing: Cancer survivor Lance Armstrong

Lance's realization:

My illness was humbling and starkly revealing, and it forced me to survey my life with an unforgiving eye. There are some shameful episodes in it: instances of meanness, unfinished tasks, weaknesses, and regrets. I had to ask myself, "If I live who is it that I intend to be?" I found that I had a lot of growing up to do as a man.

I won't kid you. There are two Lance Armstrongs, pre-cancer, and post. I returned a different person, literally. In a way, the old me did die, and I was given a second life. Even my body is different, because during the chemotherapy I lost all of the muscle I had ever built up, and when I recovered, it didn't come back in the same way.

Cancer was the best thing that ever happened to me. I don't know why I got the illness, but it did wonders for me, and I wouldn't want to walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?

Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour [de France], because of what it has done for me as a human being, a man, a husband, a son, and a father.

Read another of Lance’s stories from his memoir, It’s Not about the Bike.

You have to believe, and you have to fight: Cancer survivor Lance Armstrong on courage

When I was 25, I got testicular cancer and nearly died. I was given less than a 40% change of surviving, and frankly, some of my doctors were just being kind when they gave me those odds.

Children [with cancer] have the ability to ignore odds and percentages. Maybe we can learn from them. What other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.

After I was well again, I asked Dr. Nichols what my chances really were. "You were in bad shape," he said. I was one of the worst cases he had seen. I asked, "How bad was I? Worst 50%?" He shook his head. "Worst 20%?" He shook his head again. "Worst 10?" He still shook his head. When I got to 3%, he started nodding.

Lance's Advice: Anything's possible. You can be told you have a 90% chance or a 50% chance or a 1% chance, but you have to believe, and you have to fight. By fight I mean arm yourself with all the available information, get second opinions, third opinions, and fourth opinions. Understand what has invaded your body, and what the possible cures are. It’s a fact of cancer that the more informed and empowered patient has a better chance of long-term survival.

People live, and in the most remarkable ways: Lance Armstrong, cancer survivor

Lance Armstrong on heart:

People die. But there is another truth, too. People live, and in the most remarkable ways. When I was sick, I saw more beauty and triumph and truth in a single day that I ever did in a bike race – but they were human moments, not miraculous ones. I met a guy in a fraying sweatsuit who turned out to be a brilliant surgeon [Dr. Scott Shapiro]. I became friends with a harassed and overscheduled nurse named LaTrice [Haney], who gave me such care that it could only be the result of the deepest sympathetic affinity. I saw children with no eyelashes or eyebrows, their hair burned away by chemo, who fought with the hearts of [five-time winner of the Tour de France Miguel] Indurain.

Advice: Read Lance Armstrong’s book, It’s Not about the Bike: My Journey Back to Life.

Read another athlete cancer survivor story.

He avoided them: Testicular cancer

Dr. Sandra Scantling’s story of her brother’s legacy:

I wasn’t always an only child. I once had a brother, Stephan Wolfe. He died of testicular cancer when he was only 35.

Stephan was nearly 6-foot-4 with an enormously powerful frame. Everything about him was large—his smile, his generosity and his heart. He seemed invincible, and he was the younger sibling. He was never sick a day in his life—or so he claimed.

He was a devoted husband and a terrific brother—but he did have one tragic flaw: He was afraid of doctors and hospitals. He avoided them.

I found out much later that he had a painless swelling in his testicular area that he apparently ignored for months. In the end, this avoidance probably cost him his life.

Stephan had his cancerous testicle removed (an "orchiectomy"). His lymph nodes were clean, and the pathologist determined the cancer—seminoma--was highly curable.

He told me that he only needed a year’s follow-up and no further treatment. No radiation. No chemotherapy. He asked for my support. "It’s my life, Sandy," he said.

After his death, I learned that he had refused further treatment, insisting in his own stubborn way that he would be fine. He didn’t want to become a cancer patient—so he chose to do it his way.

He only lived three more months.

Suffering is witnessing and supporting someone you love make decisions—or fail to make decisions—that affect the length or quality of their lives. The survivor guilt is especially painful with all of the unanswered questions of "why" and "if only."

Advice to siblings: Make sure your brothers know the signs of testicular cancer; see http://tcrc.acor.org/tcexam.html.

Pay attention to change of any kind:
Any enlargement, or significant shrinking, of a testicle;
A feeling of heaviness in the scrotum;
A dull ache in the lower abdomen or groin;
A sudden collection of fluid in the scrotum;
Pain or discomfort in a testicle or scrotum;
Enlargement or tenderness of the breasts.


Read a much happier story about testicular cancer, or read Dr. Sandra Scantling’s source story in the July 1 Hartford Courant.

I didn't actually read it: Wrong site surgical error

Benjamin Houghton had much to be happy about. He was a father of four. He had survived metastatic testicular cancer, having received chemotherapy in 1989. He knew he could function normally with a single healthy testicle.

While there was no sign of the cancer’s recurrence, his left testicle was atrophied and painful, and there was a chance that it could harbor cancer cells, so he had surgery,, though it was not urgent. Surgeons mistakenly removed his healthy right testicle instead of the left, according to his lawsuit.

On the day of his surgery, the consent form stated that his right one should be removed, and a vasectomy performed on the left, when it should have read exactly the opposite. Benjamin didn’t have his glasses on. He explained, "The surgeon said, 'This is what we talked about before. Just sign here and here.' I didn’t actually read it." Benjamin, an Air Force veteran, did as the doctor ordered.

Lacking the testosterone from the healthy testicle, he may have future complications like sexual dysfunction, depression, fatigue, weight gain, and osteoporosis. He is suing for $200,000 for future healthcare costs and damages, hoping to get the healthcare system's attention, according to Attorney Susan Friery, MD.

Advice to surgical patients: Read the consent form carefully.

Read another veteran’s story, or read Mary Engel’s source story in the L.A. Times.

How He Saved his Manhood: Unnecessary surgery

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact.

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

Shock Number Two came six days after that scan, when I went for an appointment at the hospital's urology department.

The Registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion." They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the Internet.

But the Registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, " I think I'd be angry."

This didn't register with the Registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But he promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" -- a consulting physician -- maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consulting physician called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that it was possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

I had the operation. The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consulting physician was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the doctors' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

I thought I knew better - and, thankfully, this time I did.

Nigel’s Advice:

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the Internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.

Read the fuller story.