Tuesday, June 24, 2014

Oncocyte Score...

The word oncocyte still feels very awkward on my tongue, but I have good news to report:

My oncocyte score is 17 (out of 50).  The lower the better on this evaluation of the exact type of cancer cell I have.

Under 20 is considered low risk.  That is, I have a risk of about 10% of recurrence of the cancer--after completing radiation and after taking an Aromatase inhibitor for five years.

One in ten--that seems pretty scary to me, but I am grateful that my particular type of cell is not the very aggressive type with a 1/3 or 1/4 risk factor.

What random factors go into having cancer--when you discover it, what type you have, whether it's caused by genetic predisposition, by environmental conditions, or by sheer chance.

l'm becoming more grateful by the day for each aspect of my health that goes well.

Tuesday, June 17, 2014

Good news on BRCA 1 & 2

I called my doctor today to find out whether the results of my blood test are available yet.

She said it was negative for the BRCA 1 and 2 genes.  

That means that I don't need to have a mastectomy or double mastectomy.  Hooray!

Instead I will be starting radiation on June 30, five days a week for 4-6 weeks.

On June 23 I will do the prep for radiation, including getting four dots tattooed on the precise area where the x-rays will be aimed.  That will enable the technicians to direct the radiation exactly to the right spot each day.

When she heard about the tattoo, Roz teased me: "Wow, Mom, you're finally getting one!"  (I was not too happy when she acquired a rose tattoo and then a butterfly as a teenager.)

I'm so grateful that she and her sisters now don't have to worry about having the breast cancer genes, at least not from me!


Thursday, May 29, 2014

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).  


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.

Tuesday, May 27, 2014

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 BView ProfileWall Street Journal, Eastern edition [New York, N.Y] 23 May 2014: A.15.

Abstract (summary)

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."

Full Text


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.



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



Wednesday, May 21, 2014

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!

Tuesday, May 20, 2014

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.