Wednesday, December 2, 2015

Six Months Post-Mastectomy: Seromas and Serenity

I watched the calendar a lot more carefully with my first cancer, counting the days until I reached the magic three-year mark for TNBC, then the five-year mark. This time, meh.

I’ve been doing fine, healing well after six months, with a few mild complications, as is to be expected with major surgery like a double mastectomy. But I am less attuned to this cancer than the last. I take fewer notes, do less research, just basically live my life with cancer in the rear-view mirror.

Enough, already.

I sort of think I know enough: eat well, exercise, breathe deeply, love, and laugh. That’s basically it, with or without cancer.

I am blessed with only occasional discomfort and no real pain. My chest is still pretty numb, but I am getting a bit more feeling. I have learned to gently massage the area formerly known as my breasts, which eases discomfort. If I get ahead of the game, it can prevent it. I use vitamin E oil on my scars.

Both give me a sense of pampering myself. Both feel good, period.

I wear my fancy breast prostheses sometimes, and sometimes not. No big deal either way.

But because I had already had a lumpectomy and sentinel node dissection plus radiation, I had to have a radical mastectomy on the affected breast the second time. This meant the possibility of more complications, especially seromas, or a build-up of fluids at the surgical site. That’s why we get the wonderful drains during surgery—to draw the liquid, or serum, from the wound. Sometimes, though, seromas return. Again and again, as they did in my case.

I was given the all-clear from my surgeon a month after surgery—no fluid build-up. All was good. We headed to our Colorado cabin where I apparently forgot about my surgery a tad too much. We’ve been trying to rebuild our land after a forest fire in 2013, and this year meant weed control. I tried to be reasonable and not pull the giant thistles , as I would otherwise have done. Instead I clipped their heads off. I also hiked a lot.

More damningly, possibly, I took several trips on the incredibly bumpy road to town—16 miles of a mix of dirt and gravel that has been worn by fire and logging trucks and torrential rains. Once I wore my Fitbit on the trip and it recorded that I climbed 52 sets of stairs, even though I was sitting in the car. Plus, I wore a seatbelt that dissected my chest, adding even more pressure. 

So, who knows exactly which of these activities caused it—maybe all, maybe none—but I ended back in the surgeon’s office with a 50 cc seroma. Then it was back to the land, with a somewhat modified routine. 

But we had no choice but to use that road. On one trip back from town, I was in huge pain by the time we got to the cabin. I pulled out the ice and Tylenol, but the next day I had a big red bruise in the crescent where my left breast had been. It got more colorful the next few days, and I could feel the fluid building up. It was nearly time to leave anyway, so we closed up the cabin and headed back to Iowa and the surgeon’s office.

This time he diagnosed it as an ecchymosis, basically a bruise, or a large hematoma. And he drained 165 cc of blood from it. Two weeks later, he drained 50 cc, but two weeks after that, nothing. I went another six weeks without a problem. Six weeks in which we drove more than 2,000 miles, exercised a lot, and acted normal, doing things like picking up my adorable grandsons (4 and 6) whenever I could—or whenever they would let me. No problems.

Then I got an interminable cold with a nasty cough that lasted more than a month. I hacked and wheezed and, soon, there was the red crescent on my chest again. Ugh. Did I cough so much I bruised my chest? Was it the drugs I was taking?  Both? Neither? Whatever, this time the doc drained 60 cc. I went back the next week and he said there was too little to drain.

So, a few steps forward, a few back. Quite the dance, but I have decided to stay home from this particular prom from now on.

I plan not to go back to the surgeon. He’s a great guy and I like him a lot, but I am tired of needles and other sharp things on my chest. I have returned to my acupuncturist, who is working on getting my lymphatic fluids moving. I am beefing up my mobility exercises and my pampering.  Should I get the bruise again, I will ice it and massage it more regularly and help it resolve itself.

I will be more proactive, less reactive. But I will always go on with my life.

Enough of the rocky road, figurative and real. Docs are not sure why seromas dog some women and not others. I certainly was at risk because of previous treatment, including radiation that weakened my skin. But, sometimes this just happens, and stewing about it gets you nowhere.

The fact is that seromas are not life-threatening. They are uncomfortable and annoying and, as a doctor friend told me, “frustrating for patient and doctor alike.” But I have never worried that they were a precursor of something more serious. There is no evidence of that.

I remember a moment when I was undergoing treatment for my first breast cancer, when I had this overwhelming feeling come over me, the certainty that I would be fine. And I was. Nine years with no recurrence. The second cancer certainly was a shock, but it was a tiny thing and was a second primary cancer, not a recurrence, so my prognosis has always been good.

The other day, I was engulfed in the same sort of feeling: that this was a turning point and things were going to settle after this. That, again, I would be fine. It just came over me unannounced, leaving me in spontaneous smiles. I am not sure of the source of this sense of wellness, goodness, and positive energy. Whatever it is, I will take it and run with it. Or, probably. walk.

Friday, August 28, 2015

Recovering in the mountains

We finally got to our Colorado cabin a couple of weeks ago. This is the meadow in front of the cabin. It's a great place to recover.  We had a forest fire here two years ago, so the land itself is recovering. We're quite the pair.

Monday, August 3, 2015

What Caused My Cancer?

When I speak to groups about breast cancer, I always make one important point: “You didn't cause your cancer.” I say it because I know women think it. What did I do? They beat themselves up with the what ifs and whys at a time when they need to be focused on building their physical, mental, and spiritual strength.

So, when I was diagnosed with a second primary cancer last month, one of my first thoughts was, “What did I do to cause this?”

Yeah, well. Do as I say and not as I do, I guess.

It’s inevitable that we go there, though, and it might even be somewhat worthwhile, if we can pull off an honest analysis without whipping up the blame. I did beat triple-negative breast cancer the first time nine years ago and plan to beat it again. But, to be truthful, the healthy lifestyle I adopted after my first diagnosis, which I credited with my ongoing good health, became a bit difficult to sustain. Was that a factor?

As you’ll see, just about everything could have caused this. If only I had been perfect.

1. Too much alcohol. The World Health Organization considers alcohol a carcinogen and says there’s no safe level of alcohol use, especially for those at risk of breast cancer. The more you drink, the greater your risk. Immediately after my first diagnosis, I had wine only on special occasions; at dinner I had organic black cherry juice in a wine glass, which was pretty delicious. Over the years I gradually started drinking more, adding martinis and an occasional shot of whiskey. At home I kept myself to one drink, but at dinners with friends, I had two or three glasses of wine. And this past winter I had some back problems and wine was the only sure-fire painkiller, so I would have only a glass, but it was a big one.

Research shows that alcohol is a bigger factor in estrogen-positive breast cancer than in TNBC, but it is still a factor. 

But here’s the thing about research on alcohol: It is done largely using surveys, so participants self-report their alcohol use. And human nature is such that we typically underestimate our bad behavior. So people who usually have three glasses of wine a day might report that they have one, and when they get cancer, that one measly glass is seen as dangerous, whereas the actual amount was three times that much.

2. Too few vegetables. And too many French fries and tacos. My original post-cancer diet nine years ago focused on at least five servings of vegetables and fruits, which has been shown to counter breast cancer, especially triple-negative. Eventually, I got a bit lazy and replaced some of the healthy stuff with unhealthy foods.

And I especially didn't eat enough dark, leafy greens, which are high in folate that can reduce breast cancer risk. Also, my stomach had been given me problems because of too many pills, so I even stopped taking the 600 micrograms supplement of folic acid that has been shown to reduce the effects of alcohol.

3. Change in exercise routine. This one is seriously weird and counter to all the research, but I think I finally figured it out. A year before my first diagnosis, I had begun to work out with a personal trainer and ultimately lost 50 pounds by jogging, increasing the length and speed of my walks, and eating fewer calories.  In the nine years since then, I had gained back 15 of those pounds, so this winter, I got a Fitbit and started increasing my exercise and reducing my calories. By the time I was diagnosed the second time, I had lost 10 of those pounds.

Why, with both of my diagnoses, did weight loss and increased exercise end up in cancer? I think it was because I had gained the weight in the first place and the cancer was already starting when I began to lose the pounds. So the weight loss probably helped me fight the cancer and kept it from returning, but it came too late to stop it from growing in the first place. Weight gain is directly associated with all forms of breast cancer, including TNBC.

My takeaway: Keep the exercise up and the pounds off. Don't get to the point at which increased exercise and reduced calories constitute a change. Make that the standard.

4. Radiation. The irony of breast cancer treatment is that it tends to put you at risk of second cancers. The National Cancer Institute warns that its Risk Assessment Tool for breast cancer is not appropriate for women who have had previous radiation treatment to the chest because this increases their chances of cancer. Not only did I have the standard 35-day radiation therapy, but I have had multiple chest x-rays since then for COPD. So my chest has had a lot of radiation, and radiation can cure as well as cause cancer.

5. Genetics. I have no family history of breast or ovarian cancer, although my Eastern European heritage puts me at increased risk of the BRCA1 or 2 genetic mutation. I really don't think this is genetic, though. I was 60 at the first diagnosis and 69 at the second, plus I have plenty of lifestyle issues that point to an increased risk.

Still, I think I live a lot healthier than most people I know—people who, by the way, don't get breast cancer twice—so there has to be some inherent tendency toward cancer in my DNA. Cancer, researchers say, is as unique as our DNA, so I have to factor in my own inherent whatever here. Plus, our DNA can be affected by factors in our broad environment—air, water, food, diet, stress—as well as by inherited traits. I was the fifth child, born when my mother was 40, so I often kid my siblings that I got the bad eggs. 
Also, I was born in December, and winter babies are more prone to sickness later in life, perhaps linked to winter illnesses, cold temperatures, and indoor pollutants while still in the womb.

Healthy lifestyle can combat DNA damage, which is good news, and reason to return to taking good care of my body.

So, no, I didn't cause this. Maybe I didn't do all I could to prevent it. I got sloppy and cocky and apparently I don't have the leeway I thought I did. I don't believe in guilt trips, but making this list has reminded me of all the good things I can, and should, do for myself.

That French fry or glass of wine is nowhere near as rewarding as a healthy body.

Friday, July 3, 2015

The Odds Are Overwhelmingly In My Favor

When the radiologist used the ominous “I’m very concerned” about my latest mammogram, my mind just stopped. He kept asking if I had questions. “No,” I said. No, I thought. Again? No, not again. My surgeon, whom I had not seen since he had given me my all-clear four years ago, made time for me that afternoon. He looked at the films and ordered a biopsy, but he began talking treatment immediately. Yes, again.

Eventually I caught my breath and cleared my head, and then I called Pat Jones, one of the many virtual friends I have met since my first breast cancer diagnosis in 2006.

In addition to sharing a name and being the same age, Pat and I now share a diagnosis: two different bouts of triple-negative breast cancer.  Pat was diagnosed the first time in 1987, the second in 2003. She’s 28 years past her first diagnosis and 12 past her second.

I am nine years past my first and three weeks past my second.

Oh, and ugh.

If I have to follow Pat’s footsteps by getting TNBC twice, I plan to also follow her long disease-free lifeline.

To be clear: This is a second primary cancer, not a recurrence. My original cancer is long gone, but I am special and get to have a second serving. The second cancer was tiny—4 mm, or .4 cm. Miniscule. So small that the surgeon couldn't even feel it, despite knowing exactly where it was. My prognosis is excellent. We got it exceptionally early.

It was in the same breast as the last one, so I could not have a lumpectomy, as that breast has already been radiated; radiation only works once.

Still, I would have chosen a double mastectomy even if a lumpectomy had been an option. I would have done this with my first diagnosis had I been better informed. (Lumpectomies plus radiation are as effective as mastectomies on treating individual tumors, but they leave breast tissue that can get a second cancer later.)

I now know the territory much better and felt it was time to send both sisters packing, including the healthy one. I didn't want to worry about the possibility of cancer in the other breast, plus I didn't want to be a one-breasted wonder. I did not have reconstruction. I have never defined myself by my breasts, and I did not want to add more foreign elements to my body, so I am good with my new boyish charm, some occasional polyester fiberfill and eventually, perhaps, breast prostheses.

Talking to Pat was a godsend—she made me laugh, she sent me pictures of cheap padded bras she gets at Walmart, she told me about her full life after a double mastectomy, and she encouraged me to blog about this. We talked for more than half an hour and I got off the phone with renewed faith and energy.

Our talk and subsequent emails made me realize how much I have gained from my relationships with other women on this little journey of ours. My introduction to Pat came six or seven years ago, when I saw her comments regularly on various breast cancer discussion sites, encouraging others with TNBC under the name Noni Jones. I contacted her, asking to interview her for my book, and she agreed. Her daughter Candy was also diagnosed with TNBC several months after Pat and she is also 12 years past diagnosis, cancer-free.

How fortunate I am to know just who to contact to calm me. To provide the been-there-done-that-and-moved-on.   

For a remarkable professional perspective, I also emailed Carol Scott-Conner, a surgeon at the University of Iowa Medical Center, who wrote the foreword of my book.  Carol is, first, a warm and wonderful woman who, interestingly, is also my age. Equally important at this point, she is a breast cancer surgeon who also became a breast cancer patient; she had a mastectomy in 2013. She called me right away. Her assessment of my prognosis: “The odds are overwhelmingly in your favor.” Yes! I hung up, reassured and blessed to have this caring woman in my life.

So this was a shock and not how I planned to spend my summer. But, hey, as Pat reminds me, I am “one lucky chick.” This puppy was in its infancy and it is now gone. Had I put the mammogram off until this fall, as I had considered, I could be facing a different scenario.

As it is, the odds are overwhelmingly in my favor.

The Details
I had a routine mammogram June 3, then was called back the next day because the radiologist had seen calcifications. Most women have calcifications at some point and the great majority of them are benign. They come and go and are more common as we age. Some, though, spell trouble. I had a close-up mammogram that showed dense tissue behind the calcifications. An ultrasound didn't help much—the mass was so small the technician had trouble finding it.

(One annoying, sort of heartless tidbit: The technician called in another woman to help her find the mass. The second woman zoomed in and found it right away. “There!” she said, with smug satisfaction, obviously pleased with her success. Good for her, she found that I probably had cancer. Glad it made her day.)

The radiologist invited me into his lab to look at my film. My calcifications were linear, with uneven sizes and shapes—he made it clear he thought I had breast cancer again. Very small, very early, perhaps DCIS. But breast cancer nevertheless.

My surgeon ordered a stereotactic, or mammography-guided, biopsy. That didn't work because the calcifications were so close to the skin the radiologist was afraid he’d tear a hole in me with the machine. So I ended up with an ultrasound-guided biopsy.

The radiologist who eventually did the biopsy was the same one who did my original and who told me, at that time, encouragingly, “This is not that bad.”  This time, she said, “You know this is tiny, don't you?” So I again was benefitting from her positivity, again benefitting from a strong woman I had met through my first cancer.  She said the calcifications could actually be benign lines caused by the radiation. Think about that, though: caused by the radiation.

She called the next morning, June 12, with the results. From her tone, I knew what was coming: It was cancer. Infiltrating ductal carcinoma, 5 mm, with accompanying DCIS. It was high grade, which told me it was likely TNBC again, although receptor status was not yet indicated.

My surgeon was on vacation in California, but called when he got the results. I scheduled the surgery for ten days later, June 22. Surgery was a success, with no lymph node involvement, and the tumor was even smaller than they thought: 4mm. It was indeed TNBC again. I had the dreaded drains for a week, but blessedly had them removed three days ago. No more treatment is needed. It’s too small for chemo to be worth the risk and tamoxifen does not work on TNBC.

I am thankful for that eagle-eyed radiologist who first saw my weird calcifications and called me back in, and for the timing of my mammogram.

I am once again going for daily walks with my husband. Today we did two miles and I hope to keep pushing that until I get back to the four miles that had been our standard.

Family and friends have surrounded me, reminding me I am cherished. Our daughter came to pamper us with love and life and amazing food. And for days after the surgery, our doorbell regularly rang with floral deliveries. I’ve illustrated this post with some of them. I got personal and virtual hugs galore; happy, funny, and thoughtful cards; and I have celebratory lunches with friends every day next week. Soon we will finally head to our Colorado cabin for the rest of the summer.

Now that I have processed it all and got the final, encouraging pathology report, I have regained my perspective. On a scale of one to ten of the worst things that could happen to me, I would rank this at about a four.

My morale is great and I am healing well. I am usually surprised when I try to reach something and it hurts. Then I remember, "Oh, yeah, surgery." 

But I know I got this sucker.


Saturday, April 25, 2015

When And How You Eat May Affect BC Risk

Women who fast for at least 12 hours overnight—from 7 p.m. to 7 a.m., for example—may reduce their risk of breast cancer, according to research in the journal Cancer Epidemiology, Biomarkers & Prevention and presented at the American Association of Cancer Research’s annual meeting in Philadelphia.
They also reduced their blood glucose, which helps fight against diabetes. And some forms of breast cancer, especially triple-negative, are linked to insulin resistance, including high glucose.
And get this: Each three-hour increase in nighttime fasting was associated with a 4 percent lower glucose level after eating, regardless of how much the women ate.
“The dietary advice for cancer prevention usually focuses on limiting consumption of red meat, alcohol and refined grains while increasing plant-based foods,” said co-author Ruth Patterson, PhD, UC San Diego Moores Cancer Center associate director for population sciences and program leader of the cancer prevention program. “New evidence suggests that when and how often people eat can also play a role in cancer risk.”
Women in the study reported eating five times per day with a mean nighttime fasting of 12 hours. Those who reported longer fast durations also indicated they consumed fewer calories per day, ate fewer calories after 10 p.m. and had fewer eating episodes.
Source: News release from the American Association of Cancer Research

Early Stress Management May Reduce Cancer Risk

Managing stress early on has long-term benefits to women undergoing treatment for breast cancer, according to the online journal CANCER.
Patients who learned relaxation techniques and new coping skills in a supportive group over 10 weeks were less depressed and had a better quality of life up to 15 years later.
“Women with breast cancer who participated in the study initially used stress management techniques to cope with the challenges of primary treatment to lower distress. Because these stress management techniques also give women tools to cope with fears of recurrence and disease progression, the present results indicate that these skills can be used to reduce distress and depressed mood and optimize quality of life across the survivorship period as women get on with their lives,” said lead author Jamie Stagl, who is currently at Massachusetts General Hospital, in Boston.
Women with breast cancer worry for years about recurrence, which can strongly affect their view of life after cancer and this research may guide docs in warding off some of those most serious effects. The key: deal with the issue of stress directly, professionally, and early on. And this may do more than improve our moods. It may reduce risk of recurrence, says Michael Antoni, PhD, of the University of Miami, who developed the stress management techniques used in this research:
“Because depressive symptoms have been associated with neuroendocrine and inflammatory processes that may influence cancer progression, our ongoing work is examining the effects of stress management on depression and inflammatory biomarkers on the one hand, and disease recurrence and survival on the other.”