Travels with Cancer

My post-op doctor visit after my lumpectomy was May 21, and at 7 pm (after LA's rush hour), I started the drive to Colorado, planning to stay for a month and return for radiation in late June.

However, my radiation oncologist, Dr. Susan McCloskey, wants me to get the breast cancer genetic testing done before the radiation.  There's a small chance I could have the BRCA 1 or 2 gene, in which case I would have a mastectomy instead of radiation.

They couldn't do the blood test on May 21 at the UCLA Breast Cancer Center in Santa Monica for several reasons:
Medicare has to approve it before the blood is drawn.

• Medicare has to approve it before the blood is drawn.
• You need an appointment for a full genetic counseling session along with the blood test.
• It has to be done with the proper kit (from Myriad Genetic Testing, the only place in the US that does BRCA genetic analysis).
• UCLA only does these tests for Medicare/Medicaid/Covered California patients on Fridays.  (Persons with private insurance can get the test on Monday through Thursday).  

See https://www.myriad.com/products/bracanalysis/

I already had a scheduled appointment for the genetic counseling and blood test on Friday, August 1, but my doctor said we need to get the results sooner.  She asked her staff to try to get the Medicare approving done quickly and get my blood test date moved closer. 

I asked her if I could just get this blood test done in Colorado.  "They do have hospitals and clinics there," I said.

"Oh," she said.  "It's not the third world!  But I don't know if it could be arranged...." 

I didn't like the idea of sitting around in Santa Monica waiting for all these things to happen, so I just hit the road with my two dogs.

On Friday afteroon, however, May 23, someone from UCLA called my home to report that they had had a cancellation and could give me an appointment for sometime in the next week.  (Was Medicare approval already granted? I don't know.)

My husband picked up the phone and said, "No, she can't take an appointment for next week.  She's in Colorado and won't be back until June 20."  He emailed me to let me know about this.

I was driving across the Navajo Nation near Medicine Water when the email showed up on my cell phone.  I didn't notice it, of course.  I was trying to listen for phone calls and check text messages in between stopping to walk the dogs, but I sure wasn't checking email.

That night when I reached our second home near Telluride, I called John to tell him the dogs and I had arrived safely.  He mentioned the phone call and the offer of an appointment next week for blood testing.

My heart sank.  Just after doing the arduous drive with two dogs, was I going to have to turn around and drive back?

I knew the health center offices would be closed until after Memorial Day weekend.  On Tuesday morning, I began phone calls trying to figure out whether the testing could be done in Colorado and whether I needed to drive back to California.

The answer was: drive back.  

So the dogs and I are on the road again.  We spent the night at Motel 6 in Flagstaff, and one of them peed on the motel room's floor.  

Off I went to buy dog urine odor remover.  I used my elect-Obama sweatshirt from 2008 as a cleaning rag.

And now we're about to hit the road again for my appointment Friday at 9 am.  

After that, I will turn the car around and start back to Colorado.  Maybe John will come with me and drive part of the way.

The WSJ -- Dr. Daniel B. Kopans

I'm going to choose civil disobedience and copy below the text of the opinion piece by Dr. Daniel B. Kopans in The Wall Street Journal, Friday, May 23, 2014.

I appreciate the Dow Jones Company's need to use a pay wall to support the work of the reporters and editors of the Journal... but most people will have a hard time getting this important information without subscribing to the WSJ in its print or online editions.  

For those who already subscribe online or who would like to subscribe, here is the link to Dr. Kopans' article with another link to subscribe and read the article:

http://online.wsj.com/news/articles/SB10001424052702304547704579564440536353948?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB10001424052702304547704579564440536353948.html&fpid=2,7,121,122,201,401,641,1009

The text for those who can't subscribe:

Mammograms Save Lives

Kopans, Daniel B. Wall Street Journal, Eastern edition [New York, N.Y] 23 May 2014: A.15.

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Abstract (summary)

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A paper in the Nov. 22, 2012, New England Journal of Medicine by Drs. Archie Bleyer and Gilbert Welch concluded that mammography screening was leading to substantial "overdiagnosis" "and that screening is having "at best, only a small effect on the rate of death from breast cancer."

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There is a disconcerting effort afoot to reduce a woman's access to mammography screening for breast cancer by making it seem useless or even harmful. The movement dates to November 2009, during the debate over the Affordable Care Act, when the U.S. Preventive Services Task Force, which reports to Congress, dropped its recommendation for mammography screening for women in their 40s and instead recommended screening starting at age 50.

In 2009 no one on the task force had experience in caring for women with breast cancer, yet the task force decided that it would "altruistically" spare women in their 40s the "harms" associated with mammography. The main "harm," as the task force saw it, was for a woman to be recalled after a screening mammogram for additional evaluation. This was made to seem more ominous by terming every recall a "false positive" if cancer was not found.

The task force neglected to explain that, although about 10% of women are recalled (the same rate as for Pap testing), more than half will need only a few extra pictures or an ultrasound showing all is well. Some will be asked to return in six months to be careful. Only 1%-2% of women screened will be advised to have an imaging guided-needle biopsy using local anesthesia, and 20%-40% of these biopsies will reveal cancer. This is a higher yield of more-curable cancers than when a surgeon would biopsy a "lump" in the pre-mammography days.

Remarkably, this new recommendation came even though the task force's own computer models showed that as many as 100,000 women then in their 30s, whose lives could be saved by annual screening starting at 40, would eventually die from breast cancer as a result of waiting until 50.

The public outcry was immediate. Many saw the recommendation as an attempt to scale back health-care spending at the expense of women's health. The Obama administration eventually said that it did not support the task force's recommendations, and the Affordable Care Act, signed into law in 2010, mandated insurance coverage for mammograms for women in their 40s.

Yet efforts to reduce access to lifesaving screening tests, particularly for breast cancer, persist. A paper in the Nov. 22, 2012, New England Journal of Medicine by Drs. Archie Bleyer and Gilbert Welch concluded that mammography screening was leading to substantial "overdiagnosis" "and that screening is having "at best, only a small effect on the rate of death from breast cancer."

The Bleyer-Welch paper has had a significant impact on the advice being given to women today, yet its methods were unsound and its conclusions mistaken. The analysis was not based on direct patient data, but on summary numbers. Mammography was blamed for "overdiagnosis" -- detecting cancers that would regress or even "disappear" if not detected -- yet the authors had no information on which women had been screened and which cancers were detected by mammography.

All the scientific evidence to date, including large randomized, controlled trials, show that screening for breast cancer saves lives. Screening began in the U.S. in the mid-1980s. In 1990 the mortality rate from breast cancer -- unchanged for 50 years -- began a steady decline. Today more than 30% fewer women die each year from breast cancer than would have died had the pre-1990 death rate continued. That's about 15,000-20,000 lives saved annually, in large part due to screening.

Yes, cancer treatments (chemotherapy and radiation) have improved. But treatment saves more lives when a cancer is identified and treated earlier. Clinical studies in Sweden, Holland, Norway and Canada have shown that screening is the main reason for the decline in breast cancer deaths for women who begin screening at age 40. In one Swedish study, published in the journal Cancer (Feb. 15, 2011), researchers found that 30% fewer women in their 40s who were screened died from breast cancer compared with those who were not screened. Crucially, all had the same access to treatment.

In a study published last year, my Harvard colleagues reviewed 7,301 women diagnosed with breast cancer at major Harvard Medical School hospitals from 1990 to 1999 and the 609 women who died from these cancers (Cancer, Sept. 9, 2013). We found that 71% of the women who died from breast cancer were among the 20% of women who were not participating in screening. This relationship was particularly clear for women who were not being screened in their 40s compared with those who were being screened.

Nevertheless, a new effort to limit access to screening, called "risk-based screening," is upon us. Such screening would mean regular mammograms only for women who have a high risk of developing cancer and not bother those who are not at high risk. That may sound reasonable until one discovers that women at high risk account for only about 10%-25% of everyone diagnosed with breast cancer each year.

The American Cancer Society and the U.S. Preventive Services Task Force are currently reviewing their breast-cancer screening guidelines, particularly for women ages 40-49. These guidelines are important because they can affect what procedures will or will not be covered by insurance companies and the state and federal health-care exchanges in the future. One hopes that both groups would recommend regular screening for all women starting at age 40. Women should be informed that there is no biological, medical or scientific reason to delay screening until age 50.

Mammography is not the ultimate solution to breast cancer. Screening doesn't find all cancers and doesn't detect all cancers early enough to result in a cure, but it has been rigorously tested and proven to save thousands of women's lives each year. It would be unfortunate to deny women access to screening based on flawed analyses or rationing in the guise of altruism.

---

Dr. Kopans is professor of radiology at Harvard Medical School and senior radiologist at the Breast Imaging Division of Massachusetts General Hospital.

Credit: By Daniel B. Kopans

Saving Money, Not Lives

Insurance companies don't want to pay for mammograms for women ages 40-49.

Neither does the federal government--we have to reduce the national debt, right?

Never mind that 100,000 women who could get regular mammograms during that decade of their lives "would eventually die from breast cancer as a result of waiting until 50," according to computer models of the US Preventive Services Task Force, as reported by Dr. Daniel B. Kopans in last Friday's Wall Street Journal.

In spite of these statistics, the Task Force in 2009 changed its recommendation to screening only at age 50 and older.

Fortunately, the Obama administration did not support the Task Force's recommendation, and when the Affordable Care Act was signed into law in 2010, insurance coverage for mammograms for women in their 40s was mandated.

You can find more details in Dr. Kopans' article.  Here's a link that leads to the WSJ but there's a pay wall between you and "Mammograms Save Lives."  If you have access to a school or college, you can get the article through ProQuest Newsstand.

http://online.wsj.com/news/articles/SB10001424052702304547704579564440536353948?KEYWORDS=daniel+b+kopans

Both the American Cancer Society and the US Preventive Services Task Force are currently reviewing their guidelines on this issue, according to Dr. Kopans.  Insurance companies base their coverage decisions on these guidelines.

It behooves all of us who care about this issue to call, write, email and otherwise lobby to make sure the screening guidelines return to coverage for women ages 40-49.

Thank you to my husband, John Arthur, for telling me about the article by Dr. Kopans.

Below is the letter to the editor I sent today to the Wall Street Journal:

To the editors:

As a woman whose breast cancer was detected by ultrasound screening recommended after a mammogram, I want to thank Dr. Daniel Kopans and the WSJ for his opinion piece "Mammograms Save Lives" (May 23, 2014).

Actually, the article has more facts than opinion but its message is loud and clear: "Criticism of breast-cancer screenings is more about rationing than rationality."

My mammogram in March was "normal" but because of dense breast tissue, a follow-up ultrasound was recommended.  It clearly showed the mass, which after biopsy was confirmed as stage 1 cancer.  If an ultrasound had not been recommended, my cancer would not have been detected until a year later.

I have learned that 40% of women have dense breast tissue, which makes not only a mammogram but follow-up screening critical.  Many times I've been informed about the density of my tissue, but only once in the past has follow-up screening been suggested (in that case, an MRI which my health insurance did not want to pay for).  

I am so grateful that mammograms for women 40-and-older and follow-up screening in about 10% of mammograms are paid for by health insurance.

I will begin working to make sure the US Preventive Services Task Force restores its screening guidelines to cover women ages 40-49.  I have a blog on breast cancer (http://doingthecancerdance.blogspot.com/) and can use media such as Twitter and YouTube.

I am currently 65 years old but care deeply about the 100,000 women whose lives could be saved by screening at 40 but "would eventually die from breast cancer as a result of waiting until 50" (according to the Task Force's own computer models.

My daughters could be among those whose lives would be lost by a lack of insurance-covered screening.

Anne Eggebroten

Santa Monica CA 

"The important thing is that when you come to understand something you act on it, no matter how small that act is." --Sr. Helen Prejean

Hitting the Road

After rush hour and I'm about to drive to Needles, California, with Na'ilah and Stormy.

The next day-- Cortez, Colorado?  Farmington, NM?

The next day--Telluride.

I had a good post-op check-up with Dr. Kusske and Dr. McCloskey.

Radiation will start June 30--and until then, I'm a free bird!

Feeling Good on Day 4

I woke up today feeling rested and normal.  Wow!

Had to laugh when I read Mary Jo Cartledge-Hayes' Facebook comment on lumpectomy: "like having a splinter removed"!

Well, not quite, but not too big a deal either.  

It's great to look down and realize that the cancer is not there any more.

I'm wondering why they don't give women antibiotics after a Wide Local Excision (lumpectomy).

I know we are not supposed to overdo antibiotics and make bacteria more resistant to them, but after being cutting open, I would have appreciated some help for a few days.

Maybe that's why I wasn't tired on Day 1 post-op but was very tired on Days 2 and 3.  Maybe those were the days when my body was fighting off a lot of germs.  

Now I'm feeling confident about getting on the road to Colorado tomorrow after my post-op appointment with my doctors.

Day 3 Post-Op

After 8 hours of deep sleep, I woke to a phone call from the nurse at 8:15 am. 

That gave me a chance to ask my questions about the surgical vest.  The answers were:

• Continue to wear it 24/7 until your post-op check-up.
• No reason for it to have been put on inside out (must have been a mistake).

I stayed in bed another hour, just wanting to sleep more, but finally got up and had an active morning walking around the block with the dogs and watering all my flowers and newly transplanted vegetables.

The underarm incision still hurts, but ice packs help.  

I drove Roz to Starbucks at 1 pm and then went back to bed, exhausted.

At 4 pm I visited my neighbor Lani, who is a veteran of stage 1 breast cancer that occupied most of 2008 for her.  What a pleasure to compare notes with her and vent on all the little irritations of what was actually a very successful surgery!

She told me about the next step: radiation.  You're really tired and you need to start putting Aveeno cream on the area two weeks ahead so your skin won't dry out too much.  

Back to bed 7-8:30 pm... at this rate, I won't be driving to Colorado on Thursday.

My big question: am I a survivor yet?  When do I get the official designation: Breast Cancer Survivor?

Is it after surgery?  After radiation?  

I want a badge to wear, but maybe I haven't earned it yet.

Sleepy Day

I never got out of the house today, not even to check on my new vegetable garden.

I slept until nearly noon because I napped yesterday evening from 7 to 9 pm and then stayed up until the wee hours.  

At about 2 am I wondered why my right underarm hurt as much as the left one, where the lymph node had been removed.  Upon investigation I realized that the surgical vest has straps that can be lengthened.  They were still at the shortest position though I have a long torso.  I loosened them and felt a lot better on the right side.  

Yesterday was pain-free, but today my left underarm did ache as if it had been cut open, which it had.  Cold packs helped; pain pills did not seem warranted.  The small breast incision did not hurt.

I just wished the surgical vest had come with instructions: 

• Wear for the first 24 hours?  
• Wear 24/7 until my post-op appointment?  
• Wash, dry, and wear again if desired?

With the still-tight underarms it was a strait jacket, the most uncomfortable part of the WLE experience.   

Breakfast in bed at 1 pm was a treat--grits with cheese and bacon chunks from Ellen.  What a comfort food!

Reading every inch in the LAT and NYT about California Chrome at the Preakness was the best part of the day.

I spent a few hours at the computer, making a first post-op appearance on Facebook and in the EEWC-CFT community group as well as checking my email, that first duty of every 21st-century citizen.

Then I talked to my cousin Becky on the phone, slept a a few more hours, and took my first bath since Friday.

Becky was a bridesmaid at my wedding in 1972 and is also the survivor of thyroid cancer in her late 20s.  She's inspiring!