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 Big Consultation

I met at 9 am with four doctors, a coordinator, and a nurse today at the UCLA Breast Center, 1223 16th St., Suite 1000, in Santa Monica :

1)  Amy Jacobson, RN and Nurse Practictioner, who is doing a study of breast cancer patients pre-and post-surgery

2)  Parvin Peddi, Medical Oncology -- head of the team;

3)  Amy Kusske, Breast Surgeon;

4)  Charles Tseng, Plastic and Reconstructive Surgery;

5)  Susan McCloskey, Radiation Oncology;

6)  Robyn Dvorak, Breast Center Coordinator, and

John Arthur (my spouse) accompanied me.  The room was about 8' x 10'.

I sat in a white-covered examination chair as each doctor came in one by one, introduced herself, explained the procedure, and explained her role.  John sat slightly away from us, forming a triangle with us, and remained quiet during most of the hour and a half.

The doctors were each different but all very warm, engaging persons sitting face to face with me, almost nose to nose.  There was no big desk between us, no big impressive office.  The intimacy of each woman-to-woman encounter was delightful and made me feel confident in their decisions and their abilities.  I was so happy to have an all-female team (almost).

1)  Amy Jacobson, a nurse practitioner and researcher at UCLA, came in and asked if I would be willing to participate in a study of the physical and emotional health of women with first-time breast cancer shortly before and shortly after their surgery.  I said I'd be happy to participate.  

2)  Dr. Peddi was ethnically from India or Pakistan or an area near there and outlined the general plan.  She did an intake interview, which included me reporting three childbirths, 9 lb. 15 oz, followed by 9 lb. 3 oz. and 9 lb. 10 oz.  She said she had recently had her first child and compared her baby's weight.  It was a pleasure to talk woman-to-woman like this.

She reported that my cancer is invasive ductile carcinoma, the most common type of breast cancer (80% of breast cancer cases).  It's "been around for a while," is slow-growing and considered low-grade, and is estrogen-positive.   

Furthermore, breast cells depend on estrogen, and "estrogen-positive" means that the type of cancer cell I have still has its estrogen receptors, so cutting off its supply of estrogen is a way to kill off any cells that remain in the body after steps 1 and 2.

Step 1:  The tumor itself - "It's easily taken out."

Step 2:  The area around it - Radiation of the entire left breast in case any cancer cells have moved away from the main mass.  This will be done 5 days per week for about 5 minutes for 4-6 weeks.

 Step 3:  The rest of the body - Killing off any cancer cells that might have moved through the bloodstream or lymph system to the right breast or anywhere else in the body by taking one tablet per day of an aromatose inhibitor (Arimidex) for five years.  The aromatose inhibitors block formation of estrogen from hormones produced in the adrenal glands.  In post-menopausal women, these drugs cause a 99% reduction in estrogen.  They are more effective than Tamoxifen (a selective estrogen reception modulator) with fewer side effects.

3) Dr. Kusske was Caucasian with chin-length brown hair, maybe 50 years old.  I liked her as much as Dr. Peddi--nice to be looking into her light brown eyes.    

She explained that I would have a wire inserted before the surgery to specify the location of the tumor.  In addition to removing the tumor (7 mm x 4 mm x 5 mm), she would be sampling 1-3 lymph nodes.  If there is no invasion into the sentinel lymph node, that would mean that probably there are "no little tumor cells floating in the lymphatics in the breast tissue."  

She seemed very experienced and competent; I felt I was in good hands.

4)  Dr. Tseng, the plastic surgeon, was next.  He talked about "breast conservation therapy," "restoring shape after lumpectomy," "deformity," "improving the symmetry and shape of the breasts," and "rearranging tissue," which would only leave a "scar around the nipple and bottom of the breast."

I listened to him politely, but no way am I going to have any of this done.  John watched me as I listened to Dr. Tseng and knew exactly what I was thinking.   

5)  Dr. McCloskey will be in charge of my radiation.  She was much younger with blonde straight hair elegantly coiffed and with a Southern accent.  She said that during their preliminary conference before talking with me, the doctors had noted how I had "interestingly" and "fortuitously" chosen to have the ultrasound screening when receiving the letter with that option after my mammogram report was "normal" but with dense breast tissue.

Radiation is needed because there could be "small sub-centimeter tumors" remaining in the left breast after the lumpectomy.  "The lumpectomy with radiation has been shown to have absolute equivalence with mastectomy in six randomized trials with thirty years of follow-up," she said.

The full mastectomy is a risk-reducing decision, but she compared other risk factors:

• 10% of the general population of women will develop breast cancer over their lifetime.
• 10-15% of women treated for breast cancer will have a recurrence.
• 25-30% of women with breast cancer will have a recurrence if they don't have radiation.
• Under 10%--even as low as 2%--will have a recurrence if they have radiation.

She earnestly explained the radiation and its side effects.  The breast may have redness, like with a sunburn, and some change in texture.  There will be some tiredness and some weakening of the immune system.  They try to avoid exposing the left lung and heart to radiation, but they will receive some.  

All this begins in the fourth week after the surgery.  I asked her if I could have some of it done in Colorado, where I like to spend my summers, but she explained that you get measured and tattooed to hit the right spot using a particular radiation machine, and changing to another machine could affect the accuracy of the treatments.

Oh well-- half of June and all of July in busy Los Angeles instead of the mountains.  I should be able to live with that for one summer of my life.

6) Robyn Dvorak then worked with the doctors to determine the date of my surgery.  They had told me that it could be scheduled for Tuesday, May 20, at the earliest, but I explained that I would like to be in Colorado over Memorial Day weekend.  

"Can I leave by Thursday?" I asked.  "If my husband does the driving?"  Dr. Kusske said okay, but I needed to have my post-operative exam about a week after the surgery.  

I said that I had hoped to stay in Colorado for a week or two and just return for the radiation.

After some consultation with Robyn, suddenly I was offered Friday, May 16, instead.

Hooray!  My post-op will be Wednesday, May 21, and I will be alllowed to drive to Colorado after the appointment.  Without John... (with two dogs--well, I didn't mention the dogs).

I will get there in time for Telluride's Mountainfilm Fest, and a couple of friends are planning to stay at my house there.  Also I will visit my brother Bill, who will be in town that weekend.  I will stay another two weeks and report back for radiation at 4-5 weeks after surgery.

I am so grateful to be given this earlier date.  All the rest of what I heard doesn't bother me--well, the information about recurrence was big news.  

I'd been thinking that doing surgery, radiation, and either chemo or Tamoxifen/Arimidex would pretty well wipe out stage 1 cancer.  The statistics about recurrence mean my chances of recurrence will be somewhere under 10%. 

Hmmm.  Good, but still 1 in ten.