Wednesday, October 4, 2017

Ten Years After Breast Cancer And Competing In Ironman Triathlon

This coming February will be Julie Desloge’s 10th cancerversary—she had triple-negative—and she’s leading up to the celebration by training for her first full Ironman race. (Shouldn't that be Ironwoman?)  She will swim 2.4 miles, bike 112 miles and run 26.2 miles, all in less than 17 hours.
Julie biking in the Hagg Lake Triathlon in Oregon in July.
            Chew on that a minute. She will be running a marathon plus biking more than a hundred miles and swimming the equivalent of 85 laps in an average swimming pool. If you drove 112 miles in your car at 70 miles per hour, it would take you an hour and 36 minutes. But Julie’s doing it on her bike, plus that marathon and swimming thing. In 17 hours.
            Phew, Julie. Way to kick cancer out of your life.
            We're all doing what we can to recover and maintain our health, but it's nice to have Julie out there overachieving for all of us.
            She also doing it to raise money for The Breast Cancer Research Foundation.  which gets top ratings from Charity Navigator
            You can follow Julie’s blog as she prepares for the race, which is scheduled for April 2018. Julie has been racing since 2010, just two years after her diagnosis. Here’s some of what I wrote about her in my book:
Here’s one way to get over the worries about cancer treatment and the fears of its return: run a triathlon or two. That’s the approach Julie Desloge took—she completed her first sprint triathlon in June 2010, a little more than two years after she was diagnosed with triple-negative.  She participated in two additional races that summer—and her radiation oncologist was her teammate on the third.            On that race, her doctor swam 1.5 kilometers, her husband ran 10 kilometers, and Julie biked 40 kilometers. That translates to slightly less than a mile swim, a 24.8-mile bike ride, and a 6.2-mile run.
            Julie was diagnosed with a 2.6-centimeter tumor in February 2008 when she was 41. She had neoadjuvant chemotherapy—four rounds of Taxotere and Cytoxan—that got rid of all but .3 centimeters of the tumor, a nearly 90 percent reduction.            Easily speaking the jargon on cancer, she says, “No pathologically complete response for me.”  And, while her response was only partial, it nevertheless was significant, offering her a positive prognosis.
            A lumpectomy followed chemo, with radiation after that.
            Risk factors?  She’s negative for the BRCA mutation, but wonders about her reproductive history—she started her periods young, at age 11.  And she’s the mother of three children, who were 11, 9, and 6 at the time of diagnosis, although she breastfed all three for nine to ten months.
            She was about 15 pounds overweight when she was diagnosed; Taxol added another 8 pounds or so.  Her weight continues to be a challenge, even with her high level of exercise.  She now weighs more than she did at diagnosis, although much of that is probably muscle, which weighs more than fat.  I haven't really found the key to unlocking much weight loss,” she says.  Still, we’re talking about being only slightly beyond her ideal—Julie says her BMI is a healthy 24.8.
            She had been exercising regularly before cancer, doing cardio and resistance exercises four to five days a week. But she upped the ante after treatment and hit the triathlon circuit near her Portland, Oregon home.         Cancer, she says, not only gave her motivation to maintain a healthy lifestlye, but it provided a chance to look outside herself at what others are going through. She’s bothered when friends protest that they should not complain about any problems they encounter, given what she faced in cancer treatment.  “Pain is pain,” she says.
             Julie remains grateful for her continued health and her ability to compete, knowing how many other beautiful women have been denied that chance. In a recent post about gratitude, she quoted Psalm 139:14:
“I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.” As a breast cancer survivor, I have been in awe about how fragile and strong the human body can be at the same time, affected with disease, yet able to withstand the rigors of cancer treatment. I have always been grateful for that, and grateful to be able to thrive at life now.
Julie is carrying a list of the names of breast cancer survivors in whose honor she competes and a list of the names of those in whose memory she competes. She'll carry the names with her across the finish line. If you want to add a name, let her know.

Thursday, September 14, 2017

Premenopausal Women with Belly Fat More at Risk of TNBC

Me: Normal BMI, but with
tummy fat. I've had
TNBC twice. I'm 11 years
past the first diagnosis.
two years past
the second.
Women whose fat accumulates around their stomachs and internal organs—called visceral fat—are more at risk of estrogen negative breast cancer, including triple-negative, according to research published in the Oncologist. The increased risk comes even if they are not overweight—that is, if they have a normal body mass index (BMI). The risk increases is they are past menopause. [PAT’S NOTE: This is me.]
            By contrast, overweight women whose fat accumulates in the thighs, hips, or buttocks—called subcutaneous fat—are more at risk of estrogen positive breast cancer. In this case, having a high BMI and being premenopausal increases the risk.
            “A possible reason is that subcutaneous fat is involved in estrogen production, which may promote ER+ breast cancer,” says corresponding author Zhigang Yu at the Second Hospital of Shandong University in China. “Visceral fat is more closely related to insulin resistance and may be more likely to promote ER- breast cancer.”
            For the study, researchers recruited 1,316 Han Chinese women between 25 and 70 in Northern and Eastern China who were newly diagnosed with breast cancer and compared their body types to women who had not had breast cancer.
            Asian women tend to be slimmer than their American counterparts, but those who are overweight typically carry visceral fat. Subcutaneous fat is more common in the United States. Could that be why ER+ cancer is more common here?

To sum up: 
• Women with belly fat who are past menopause are at increased risk of TNBC, even if they are not overweight.
• Women who over overweight, with fat in thighs, hips, and buttocks and who are premenopausal are at risk of ER+ breast cancer.

Tuesday, June 27, 2017

Studies Show Obamacare Improves Breast Cancer Prognosis, Cutting Medicaid Puts Women at Risk

Two separate analyses demonstrate that women with access to mammograms 
and other breast cancer screenings are diagnosed at earlier, more treatable, 
and less costly stages.

More women were diagnosed with early stage breast cancer after the Affordable Care Act took effect, according to a study published this month in the journal Cancer Epidemiology.  Equally important, there was a decrease in later stage, and more serious, cancers.

Late-stage breast cancer is more costly to treat and is more likely to be fatal than early-stage cancer.

Increases in early diagnoses were higher among African American and Latina breast cancer patients. 
In the past, the cost of mammograms has prevented many Latinas and African Americans to receive mammograms overall or at recommended intervals.

The Affordable Care Act eliminated copayments and other out-of-pocket costs for 45 preventive care services, including mammograms, making them more affordable and leading to the potential for earlier diagnoses, researchers say. Diagnosing breast cancer when it is still in Stage 1 could improve the prognosis for thousands of women and reduce the need for expensive and invasive treatments such as chemotherapy, wrote lead author Abigail Silva, PhD, MPH, of Loyola University Chicago Stritch School of Medicine.

The study included 470,465 breast cancer patients between the ages of 50 and 74 who were covered by private insurance or Medicare and were newly diagnosed with breast cancer. Researchers examined two time periods: 2007-2009 (before the Affordable Care Act took effect) and 2011-2013 (after the act took effect). They used data from the National Cancer Database, which includes approximately 70 percent of all newly diagnosed cancers in the United States from about 1,500 hospitals.

Overall, the number of breast cancers that were diagnosed at Stage 1 increased 3.6 percent, from 54.4 to 58.0 percent. There was a corresponding decrease in Stage 2 and Stage 3 diagnoses, while the proportion of Stage 4 cancers did not change.

The diagnosis of Stage 1 breast cancer increased by 3.2 percentage points among whites, 4.0 percentage points among African Americans and 4.1 percentage points among Latinas. 

Historically, more white women are diagnosed with Stage 1 breast cancer, while African Americans and Latinas are diagnosed at a higher stage. This disparity decreased following the Affordable Care Act, as minorities saw improvements in Stage 1 diagnoses.

This is especially significant for triple-negative breast cancer, which has been shown to be more prevalent and aggressive among African Americans.

Cutting Medicaid Puts Women At Risk
Tennessee women with breast cancer were more likely to be diagnosed at later, more dangerous, stages after a substantial rollback of Medicaid coverage for adults in the state, with the biggest effects being among women in low-income areas, according to an analysis published in the journal Cancer.

Researchers analyzed Tennessee Cancer Registry data from 2002 to 2008 and compared women 
diagnosed with breast cancer who lived in low-income zip codes with a similar group of women who 
lived in high-income zip codes, before and after Tennessee’s Medicaid restrictions. They found that 
women were not only diagnosed at later stages but also experienced more delays in treatment after 
the restrictions were imposed. Low-income women had a 3.3 percent increase in late-stage diagnosis 
compared to those with higher incomes.

Tennessee restricted Medicaid enrollment in 2005

The findings suggest that women did not get screenings or other essential primary care that may 
have led to an earlier diagnosis, according to team leader Wafa Tarazi, PhD, of Virginia 
Commonwealth University. The reason: lack of affordable care.

“Medicaid rollbacks may contribute to widening disparities in health outcomes between low-income women and their wealthier counterparts,” said team leaders Lindsay Sabik, PhD, of the University of Pittsburgh, another team leader.

Wednesday, June 14, 2017

Immunotherapy Trials Encouraging for Metastatic TNBC

The first triple negative breast cancer immunotherapy trial to date has yielded some hopeful results for metastatic TNBC, according to results presented at the 2017 American Society of Clinical Oncology Annual Meeting.
The checkpoint-blocking drug Keytruda shrank pre-treated tumors by more than 30 percent in 5 percent and stabilized disease in 21 percent of women in the group. All patients who saw their tumors shrink lived for at least another year. In comparison, the patients who did not experience tumor regression had lower survival rates. (Remember: This is metastatic TNBC, or stage 4, not earlier, or more treatable, forms, such as stages 1-3.)
The trial included two groups of patients with metastatic TNBC. The first consisted of 170 patients who had received earlier chemotherapy. The second group was previously untreated and had tumors expressing the checkpoint molecule PD-L1.
Both groups tolerated the treatment well, with 12 percent of patients in the first group, and 8 percent in the second group reporting side effects such as fatigue and nausea. Four percent of patients in the first group, but none in the second, stopped the treatment because of these effects.

Monday, April 24, 2017

Radiation Recall? A Search for What Caused My Chest Inflammation After A Mastectomy

More than ten years after I had radiation on my breast, I developed a skin inflammation on the radiated site. It came on suddenly, a series of angry red veins branching across my chest where my left breast had been, with occasional darker, pooled spots, all in a rectangular shape matching the area where I had been radiated. My skin was smooth, with no bumps or lumps.

It was November 2016, a year and a half after my second bout of triple-negative breast cancer. My cancer story in a nutshell: I have had TNBC twice: once in 2006 and once in 2015. The second was not a recurrence, but a second primary cancer. For the first cancer, I had a lumpectomy, chemo, and radiation. The second time, with a tumor less than half a centimeter, I had a double mastectomy without reconstruction.

I had absolutely no problems with radiation burns while undergoing my original treatment, nor in the intervening ten years, although I do think it highly possible radiation was one cause of my second cancer.

The mastectomy, though, did not go all that smoothly. I developed seromas for months afterward, the last one being essentially a blood-filled bruise. The surgeon drained it and, within days, it had healed, but for a few days, the skin looked a little like the inflammation I was now seeing. At that time, my surgeon said the skin was weakened by the long-ago radiation and became even more damaged by the more recent surgery.

I went for a year after that last seroma with what might be considered normal healing after a mastectomy: some arm and incision pain, but nothing unusual. Now something was up. But what?

Radiation Recall

After checking online, I self-diagnosed radiation recall, which can occur years after radiation. Most cases are drug-related, caused when patients are given cancer-fighting drugs such as anthracyclines like adriamycin, after radiation. I had been given adriamycin, but that was ten years ago. Why would I now be having a reaction? It had to be something else. Chat rooms were full of discussions of women with radiation recall, with causes all over the board: scented lotions, wool, new prescriptions or over-the-counter drugs. Treatments were equally varied: antihistamines, steroid creams, and anti-inflammatory drugs such as ibuprofen.

Some mentioned that chest inflammation could be lymphedema of the trunk, which made a little sense, as my case was accompanied by pain in my upper arm. But mine was milder than those I saw online. I had none of the swelling that was indicative of lymphedema. 

The basic message from my research, though, was encouraging: Radiation recall is not usually a sign of a new cancer and is most likely a skin issue, some form of dermatitis.

My inflammation looked far, far better than photos I saw online, which showed chests that were completely red, often scaly. Mine looked modest in comparison. The closest was this one, which they call photo recall. Most other images made me thank my lucky stars.

As I was trying to figure this all out, a friend who is 11 years past her TNBC diagnosis messaged me and said that she has been diagnosed with radiation fibrosis. So I researched that, but I had none of the scarring that is characteristic of that syndrome. Still, it is a late effect for some breast cancer patients and seems worse for head, neck and throat cancer patients. Interestingly, a University of Iowa clinical trial recommended Vitamin E for radiation fibrosis, but vitamin E turned my skin red every time. That was one of the few direct effects I could see, and it ran contrary to much of what I read in general about soothing breasts to help them heal after surgery and to reduce radiation effects.

At the same time my chest got inflamed, I had throat phlegm that would not clear up and I remembered my friend Marilyn, who thought she had bad allergies but ended up having a recurrence of TNBC on her chest wall. I decided that was what was happening to me—the phlegm, as in Marilyn’s case, was an indication of a tumor, and the skin inflammation was just verification. Clearly, I was dying, because that is the conclusion we reach in these situations, right?  But I went to my primary care doctor for a professional assessment, just to be sure.

By the day of my appointment, the inflammation had almost disappeared—only a couple inflamed veins remained. The doc had to use a flashlight to see the reddened veins and was, not surprisingly, skeptical of my worries. As for the phlegm, she looked down my throat with a scope and felt my lymph nodes. Nothing again.  

“Could this be stress?” I asked her. This happened right after the election and I am a Democrat, so stress is my best buddy these days. “If you want it to be,” she answered. I mentally put that on my list of Obnoxious Things Doctors Have Said To Me.

But she told me that if that inflammation got worse or if the throat didn't get better in two weeks, to come back.

The next day, the skin got redder, but rather than heading back to the doctor, I began a diary of possible causes. The phlegm soon disappeared, so my focus returned to my skin, to this being a dermatological issue.

Searching For a Cause

I had worn a wool sweater the day the inflammation came on, with a nylon camisole underneath. That seemed like an obvious cause, so I stopped wearing any synthetics and used only cotton. I have worse only cotton in the five months since then. No real change, although the inflammation gets better for a bit, then worse again.

I use organic, unscented laundry soap, but I changed brands. No help.

I tried steroid creams and ibuprofen but noted no obvious cause and effect. I upped my dose of antihistamines. Nothing, except I got pretty sleepy.

I began to suspect some of the supplements I was taking, including a new multivitamin I began using the day after all this happened. Why it would have caused anything the day before I started it makes no sense, but I stopped it anyway. I even moderated my yoga, as it often hurts my affected arm and I thought maybe that could be related to the rash. So I cut out anything that put pressure on the arm. 

Again, the inflammation got better, then it got worse, and I could not determine any common factors. I concluded that it must be a mix of causes, some sort of perfect biological storm.

Then, I got a series of bumps along my incision. One was about a quarter of an inch in diameter. Again, I was clearly dying. If cancer recurs, it often comes as a rash at the incision site. This time, I made an appointment with my surgeon. But, by the time that appointment came, the bumps had shrunk and the inflammation as a whole had greatly reduced.

He came in somber-faced and I tried to tell him I was sure I had overreacted, but he wanted to go over my entire medical history before he looked at the rash. I was there with a recurrence, he thought, and that was not good news. Once he saw my chest, though, he smiled and said the bumps were clearly not tumors. Nevertheless, he wanted me to get a chest x-ray. More radiation? I asked. Low doses, he said. He wanted to make sure this had not spread to my lungs. Reluctantly, I agreed, acknowledging that by deciding to go to the surgeon in the first place, I at least subconsciously wanted the kind of answer that additional tests would give.

He called me the next day—my lungs were clear, except for the signs of COPD, which I knew I had. No tumors.

That day, the skin bloomed a bright purple again. A reaction to the x-ray? Who knows, but it’s hard to discount that possibility. But it healed a bit, then bloomed bright and angry again. So I went back to my diary, back to trying to figure out what was going on with my blasted chest.

I began to suspect the tonic water in my nightly gin and tonic, a drink I know I am better off without, so I cut it out and replaced it with healthier black cherry juice without gin. The rash again got better, then worse. There just seemed no pattern.

Three weeks after seeing the surgeon, I had my yearly appointment with the dermatologist. He looked at the inflammation, said it was probably harmless irritation, but took a biopsy nevertheless. Again, I was annoyed at the extra testing, but equally curious to see what it would show. The result: my skin was inflamed, but there were no signs of cancer. The pathologists suggested the inflammation was caused by a new drug or by contact with an allergen of some sort.

So, three doctors, an x-ray, and a biopsy later, I was right back where I was with my original Google search. This was likely caused by something I had injected or exposed my skin to. Except for one thing: after the biopsy, the rash cleared up almost entirely. More than ever before. Now, three weeks later, it is still mostly clear—just a few faint lines remain, but those might always be there. Gone are the red veins, the purple pools.


A Partial Answer

After the biopsy, I was advised not to shower that area—I had to gently clean it with a cloth. No hot water flowing over it. So, my dermatologist might have accidentally solved at least part of my mystery. I had been taking long showers to alleviate my stress after the election and, if all that hot water wasn't the cause, it was certainly exacerbating my inflammation. I’ve cut down on my showers, which is an environmentally kind thing to do in the first place. And my chest now looks almost normal, in the context of chests that have been radiated, deflated, and deformed. 

Eventually, perhaps, I will reintroduce some of the elements—my multivitamins, yoga arm exercises, tonic water—bit by bit and see what happens. Maybe I will eventually figure out what caused this, and maybe eventually my skin will be completely clear and this will all be a weird memory. What is obvious is that docs have no idea.

And right now, the only dark marks on my chest are the two spots where the doc took the biopsy. But even they are healing nicely.

Mystery unsolved, except there are no signs of cancer. And that, as always, is a good thing.