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Are We Overdiagnosing, Overtreating Breast and Prostate Cancer?

That's been my own personal nightmare for the past 8 years.  

For two decades, healthcare professionals and organizations have been making a concerted effort to increase participation in breast and prostate cancer screenings, and the numbers have increased. About 50 percent of men at risk of prostate cancer have a routine prostate-specific antigen (PSA) test and about 70 percent of women older than 40 report that they have had a recent mammogram.

It was hoped that increased screening would result in a reduction in deaths from breast and prostate cancer, yet overall cancer rates are higher, more men and women are being treated for breast and prostate cancer, and the incidence of later-stage or aggressive disease has not declined significantly.

One possible reason for these unexpected results is that breast and prostate cancer screening may be overdiagnosing low-risk cancers, and thus leading to overtreatment, without significantly reducing the burden of aggressive or more serious cancers. “So the basic assumption of these screening programs that finding and treating early stage disease will prevent late stage or metastatic disease may not always be correct,” the authors [of an article in the latest edition of the journal of the American Medical Association] state. [LINK]

Testing

Trying out a new toy. Posting from an iPod Touch. 

Going to spend the day trying to forget what I made the great mistake of reading about endometrial biopsies. Quotes from various women: "The worst pain i've ever felt," "Worse than childbirth," "I almost passed out," etc. I am a terrible coward when it comes to things like this. Going to ask Doc for a horse tranquilizer. 

Medical Math

Recent physical symptoms + elevated serum cancer markers = several medical tests/procedures in my near future 

Might end up being nothing.  I'll know more over the next few weeks as tests are completed.

  

Breast Cancer Claims Another Victim

I remember reading about this.  What a shame she didn't make it.  She was quite a woman:

Nearly a decade after she was rescued from a remote Antarctic research station after diagnosing herself with breast cancer, Dr. Jerri Nielsen died early Tuesday, her brother said. She was 57.

Nielsen had been fighting the latest round of cancer for the past five years, brother Eric Cahill said. She died just before 4 a.m. in Massachusetts, surrounded by her family, he said.

"She would want to be remembered for the adventure and, you know, living every day, and not just the sickness," said sister-in-law Diana Cahill. "She was very much active and still even doing talks as late as March of this year. Then the last month or so, she was pretty sick."

Nielsen caught the nation's attention in 1999, when she found a lump in her breast as a 47-year-old physician stationed at the Amundsen-Scott South Pole Research Station.

After finding the lump in June, she diagnosed herself with breast cancer and began treating herself using chemotherapy agents that the U.S. Air Force parachuted to the station the next month.

It was later revealed, according to a March 2009 article in the Detroit Free Press newspaper, that Nielsen -- an emergency room doctor from Cleveland, Ohio -- performed a biopsy on herself with the help of non-medical crew, who practiced using needles on a raw chicken.

While treating herself, Nielsen carried on her duties as the sole doctor for the 41-person research group. She consulted with her doctors in the United States by e-mail and teleconference. They recommended that she return as soon as possible for treatment.

Although flights in support of the South Pole program don't usually begin until late October or early November, the start of Antarctic spring, it was October 6 when two planes set out on what was dubbed Operation Deep Freeze.

Ten days and a handful of stops later -- California, Hawaii, Pago Pago, New Zealand and then Antarctica -- rescuers braved temperatures of nearly minus 60 degrees Fahrenheit to land a ski-equipped plane at the pole, drop off a replacement doctor and pick up Nielsen. It was the earliest such flight attempted.

Once she returned home and was treated, Nielsen's cancer went into remission, and she wrote about her experience in a best-selling book, "Icebound." She married and became a public speaker, Diana Cahill said.

But in 2005, Nielsen's cancer returned in her bones and liver, later spreading to her brain. [link]

I was diagnosed with infiltrating intraductal breast CA with micro-metastasis to the lymph nodes in August of 2001.  The tumor was triple negative, it had infiltrated into tissue outside of the ducts, it was multi-focal (there were several tumor sites throughout the breast) and they found cancer cells in the one of the sentinel lymph nodes. 

Triple negative breast CA doesn't respond to hormonal treatment, leaving one of the big guns of preventive maintenance out of the treatment arsenal. This kind of tumor grows at the same rate regardless of the level of estrogen and progesterone in the host's body.  Some tumors are only grow in the presence of those hormones.  So they give women with that type of tumors medications to decrease the hormone level in their bloodstream.  This is of no help with triple negative CA, which is also usually a more aggressive and faster growing cancer, especially in younger women (at 45, I was still considered a younger woman when it came to CA).   

I underwent a modified radical mastectomy and a course of chemotherapy consisting of 4 doses of Adriamycin and Cytoxin spread out over 3 months.  For the first 5 years after treatment, I had a 22% chance of recurrence. That might not sound like a big deal, but considering the probability of getting cancer to begin with was 14% at the time (not sure if that has changed since then), it wasn't much comfort.  Plus, if the Adriamycin and Cytoxin failed (the atomic bomb mixture of chemo treatment at the time), there weren't many other options.  But I once read that after the 5 year point, the chances of recurrence decreases year by year.  

I rarely think about it, until reading about someone like Dr. Nielsen. I don't think cancer will be returning.  If it does after all this time, I will probably be nearly as shocked as I was learning about it the first time around.  However, I will never again be in the same position as I was when first diagnosed - the doctor told me over the phone while my husband was at work and I was home alone with my children who were ages 10, 12 and 17.  Now there was a test of motherhood.  Learning news like that without losing it in front of the kids.  

Whatever doesn't kill you makes you stronger. I think there's some truth in that.

Do You Know Someone Undergoing Cancer Treatment?

Cleaning For a Reason is an organization that provides free house cleaning services for people who are being treated for cancer.

Oh My

One of my doctors, a dermatologist I've been seeing for at least 20 years, was diagnosed with breast cancer around the same time that I was (2001).  I see her once or twice a year - she's an excellent doctor and I like her a lot.  She must be in her mid-late 50s. 

I just called her office to renew a prescription, and was told she retired due to "medical reasons."  When I expressed my dismay, they told me she's in treatment, but doing fairly well considering.

 

My oh my, that just sucks. Awful for her, of course. 

I will miss her as a doctor. 

Quite frankly it shakes me up to her about people who've been in remission and have cancer come back.  

I consider myself cured.  Period, end of story. 

I never think about it coming back. 

Until I hear things like this. 

The Artfull Bras Project

Members of Quilters of South Carolina have created one-of-a-kind bras for Breast Cancer Awareness. The exhibit consists of fifty original works of art which are unique, entertaining, humorous, and beautiful to make the public aware of breast cancer, to memorialize those lost to the disease, and to honor survivors.

"Support your favorite boob" by Kathy Hauser

Click and scroll down. 

August 27, 2001

The date I was diagnosed with breast cancer.

There's a long, a very long,  story associated with this, but I am not sure I feel like writing about it. I have trouble writing personal stories without feeling hideously self-indulgent.  This obviously doesn't keep me from writing personal stories, but I do try to stick to brief ones, at least, and this one would not be brief.

But hold on.  I just figured out a way to tell the story and make it very brief:

No recurrence.   : )    

In the end, that's all that matters.

Just Sent This to My Daughter

You may find it interesting too:

Get your daughters off the couch: New research shows exercise during the teen years — starting as young as age 12 — can help protect girls from breast cancer when they're grown. Middle-aged women have long been advised to get active to lower their risk of breast cancer after menopause.

What's new: That starting so young pays off, too.

...Women who were physically active as teens and young adults were 23 percent less likely to develop premenopausal breast cancer than women who grew up sedentary, researchers report Wednesday in the Journal of the National Cancer Institute.

Read the whole thing.

Reach to Recovery

Reach to Recovery is a program from the American Cancer Society which matches up breast cancer survivors with women who are newly diagnosed or undergoing treatment.  I'm a volunteer and I've worked with a few women.  Tonight, I had an especially moving and emotional phone call. 

The woman lives in my town, is 62 and just lost her husband recently.  She had a mastectomy this past February and is debating whether to undergo chemotherapy. 

Her will to live was lost with her husband. She could barely talk about him - they'd had a long and happy marriage. She felt alone and lost.

What could I do?  What could I say?  How could I help?

In her case, chemo will give her a 5-7% improvement in odds of not having a recurrence.  I said everything I could think of to convince her to do it.   I could really understand how she felt, but as I told her, one day she will wake up and it will be spring and the sun will be out, the flowers will be blooming, and she will be glad to be alive and glad she gave herself a better chance for a long life.  She has 2 children, one grandchild and another on the way. I shamelessly told her to do it for her children, and that she shouldn't deprive her grandchildren of their grandmother.

She said she has friends who have offered to help, but she hated the thought of asking them for anything.  I suggested that instead of thinking she was asking for help, she was instead providing an opportunity for others to feel needed and good about themselves. That people like to help others and they would especially like to be able to help a friend. And of course I told her she could call me.

I suggested that she consider thinking about trying one dose, and seeing how it goes.  People react in different ways - maybe she would be one who got through it more easily. She said she hadn't thought of that, that maybe she would try it. 

I'll call her back in a few days to see what she decides.

FYI: Breast Cancer Facts 2007

From the National Breast Cancer Coalition (NBCC), a grassroots organization dedicated to ending breast cancer through action and advocacy:

• The National Cancer Institute estimates that a woman in the United States has a 1 in 8 chance of developing invasive breast cancer during her lifetime. This risk was about 1 in 11 in 1975.
• More women in the United States are living with breast cancer than any other cancer (excluding skin cancer). Approximately 3 million women in the U.S. are living with breast cancer: about 2.3 million have been diagnosed with the disease and an estimated 1 million do not yet know they have the disease.
• Breast cancer is the most commonly diagnosed cancer among women in the United States and worldwide (excluding skin cancer). In 2007, it is estimated that 240,510 new cases of breast cancer will be diagnosed among women in the United States: 178,480 invasive breast cancers and 62,030 cases of in situ breast cancer (of which, 85% will be ductal carcinoma in situ (DCIS)).¹ 
• Breast cancer is the second leading cause of cancer death for women in the U.S, after lung cancer. Approximately 40,460 women in the U.S. will die from the disease in 2007. Breast cancer is the leading cause of cancer death for U.S. women between the ages of 20 and 59, and the leading cause of cancer death for women worldwide.
• Approximately 11% of women diagnosed with invasive breast cancer die from the disease within five years; at ten years, 20% will have died. The most recent available statistics show that 40% of all women diagnosed with invasive breast cancer died from the disease within 20 years.² 
• Older women are much more likely to get breast cancer than younger women. Most breast cancers (about 80%) occur in women ages 50 and older. About 5% of all breast cancer cases occur in women under the age of 40. However, younger women who get breast cancer have a lower survival rate than older women who get breast cancer.
• Combining all age groups, white (non-Hispanic) women are more likely to develop breast cancer than black women. However, black women are more likely to die of breast cancer than white women.
• Black women have a higher breast cancer mortality rate at every age, and a lower survival rate than white women.³ The five-year survival rate for white women diagnosed with invasive breast cancer is 90% while the five-year survival rate for black women diagnosed with invasive breast cancer is only 77%.
• Between 1994 and 2003, the mortality rate for women of all races combined declined by 2.4% annually. In white women, breast cancer mortality declined by 2.5% annually. In black women, mortality declined by 1.4% annually during the same period.⁴ 
• Mortality has declined faster for women under the age of 50 (by 3.3% annually), regardless of race/ethnicity.
• The current methods of treatment in use in the United States are surgery (mastectomy and lumpectomy), radiation, chemotherapy, hormonal therapy, and biologic therapy (e.g. monoclonal antibody therapy).
• Mammography screening does not prevent or cure breast cancer. However, it may detect the disease before symptoms occur. Breast cancer tumors can exist for six to ten years before they grow large enough to be detected by mammography.
• Mammography is less effective in younger women. In the overall population, digital mammography does not perform better than traditional film mammography. However, among younger women, digital mammography has been reported to detect more breast cancers than film mammography. There are no studies to establish whether screening with digital mammography decreases breast cancer mortality.
• All women are at risk for breast cancer. About 90-95% of women who develop breast cancer do not have a family history of the disease.
• Factors that increase a woman's risk of breast cancer include older age, genetic factors, family history of breast or ovarian cancer, long menstrual history, nulliparity (having no children), older than 30 years of age at first full-term pregnancy, daily alcohol consumption, use of combined postmenopausal hormone therapy (PHT), postmenopausal obesity, and ionizing radiation. Factors that decrease a woman's risk of breast cancer include breast-feeding and physical activity (exercise).
• Recently, higher breast density has been show to be strongly associated with the risk of breast cancer. It was found that breast cancer rate was almost four times greater in those with extremely dense breast tissue as opposed to those with fatty breast tissue. It is important to remember that since mammography is less sensitive in detecting breast cancer for dense breasts, the effect of breast density may be somewhat underestimated.
• Although scientists have discovered some risk factors for breast cancer, the known risk factors account for only a small percentage (~30%) of breast cancer cases. There are few interventions with limited value that reduce risk, and none of them prevent breast cancer.

Link

Three Strikes

...and you might be out:

Women with what is referred to as "triple-negative" breast cancer are more likely than other women with breast cancer to experience a relapse, a new study by Canadian researchers shows.

Triple-negative breast cancers are estrogen receptor-negative, progesterone receptor-negative, and HER2-negative.

The study shows women with triple-negative breast cancer were almost twice as likely to develop distant relapse even after accounting for other factors related to relapse such as tumour size and involvement of lymph nodes.

"To confirm both the aggressive nature of triple-negative breast cancers regardless of other tumour features, and the distinct pattern of relapse will help identify those patients who need aggressive treatment up front," said Dr. Rebecca Dent, a medical oncologist at Sunnybrook's Odette Cancer Centre.

Dent collaborated on the study with Dr. Steven Narod at Women's College Hospital. 

Their study found that the pattern of relapse had a rapidly rising rate in the first two years following diagnosis and a peak at two to three years followed by a decline over the next five.

Link

My CA was triple negative. But I am almost 6 years out from diagnosis.   

Chemobrain

Yeah. I know it well. This writer describes it just as I experience it:

First, I became aware of gaps in my memory. People would mention an event or conversation that I had been party to and I would have absolutely no memory of it. I was reminded of the movie "Memento," in which the main character has lost the ability to store anything in short-term memory. When he met someone new he would take a photo of them and write their name on it because he knew that by the next day he would have no recollection of having ever met them.

I have no way of predicting what I will remember and what I will forget. It isn't really the same as ordinary memory lapses -- forgetting one thing from a long list or forgetting something because you were distracted and not really paying attention when it happened. I think I am paying attention, but ... poof! No memory of whatever I was supposed to do, no recollection of a conversation or event. And it is usually so completely erased that I am initially incredulous. "I already told you? Are you sure?"

So, if I repeat myself or if I have forgotten something you've told me, this is why. I don't dislike you, you are not boring to me, you do make an impression - my mind has simply become a sieve and things sometimes slip through the holes. 

Oops, I almost forgot this.

Am I upset over it?  I've learned to accept it.  I don't like it, but what choice do I have? Life is a challenge - never boring.  One more stumbling block in the "whatever doesn't kill you makes you stronger" path to...to...where am I going again?

When Cancer Strikes

I read of the passing of Cathy Seipp and the recurrence of Elizabeth Edward's cancer with great sadness.  I'd read Seipp's blog from time to time.  She was a great writer and a beloved member of the blogosphere and there has been a tremendous outpouring of grief at her passing.

In a matter of moments, Elizabeth Edwards discovered that a killer has spread to her bones.  I sincerely hope she is one of the fortunate few who survive stage 4 cancer and go on to live for many years.

Lately I've been feeling very much like a regular person instead of a cancer survivor, but I feel a bit brought up short and unnerved by this news - particularly Edward's recurrence.