Category Archives: Triple Negative Breast Cancer

The Cancer Book, Part Two | Keeping Track of My Breast Cancer

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Once I was in posession of my perfectly un-pink, spiral bound notebook, I set to filling its pages.  In the early days, it was merely a to-do list: long distance friends to call before anything went on facebook– that’s no way for them to find out I had cancer, letters to write– authorization for friends and family to pick up my kids from school if I were unable, prep for diagnostic procedures.  I carried it with me everywhere, even to the bus stop.  Nurses would call all the time, with very specific prep for upcoming procedures or with more appointments for me, and I liked to have my book so that I could write everything down in the same place.

My cancer book evolved, becoming a place for me to write questions to ask at my next doctor visit.  I was always careful to leave space for the answer below the question so that I didn’t have to turn the page back and forth between questions.  When I sat down in her lovely office for my very first meeting with my oncologist, she saw me pull out my notebook and told me that I didn’t need to worry about writing things down, she would write down everything I needed to know while we chatted and I could take her notes with me.  I tried not to take any notes the first few minutes, but I couldn’t help it.  I’m so glad she didn’t challenge me– taking my own notes was part of my process.

During chemo,  I got pretty hard core with my cancer book.  Each day, I would draw a horizontal line to separate the page for a new day.  Besides the day of the week and the date, each day was labeled to help me track my response to chemo.  “R2D1″ corresponded to the first day of the second round of chemo.  On the left for each day was a column of the meds I needed that day with checkboxes to mark when I took them.  Since I was supposed to take my temperature each day to catch any infections early, I always left a blank where I could record my temperature.  I made notes about my sleep– how long I napped and how well I slept at night.  I would record any symptoms or reactions, things like hot flashes and bone pain, and when I started taking taxol, I also had a section where I recorded the extent of my neuropathy.

Now that I write it all, that seems like a lot.  It really wasn’t that much, but the repetitiveness really helped it become second nature.  Having it all written down made it easy each time I headed to the doctor, I could quickly give her solid details and she could assess if there were things that we should change.  (We changed my meds several times based on how I was feeling.)

Out of chemo, beyond surgeries, the cancer book doesn’t live in my purse anymore. While I don’t write down every single headache, if I notice something a few days running, I make a note. It’s really reverted to the stage where I write down questions or concerns for my next appointment.  Whether it was during chemo or now, in that crucial stage of survivorship where the fear of recurrence is always lingering just beneath the surface, it’s amazing how much easier it is to see patterns emerge when looking at pages in a notebook instead of trying to recall the details on my own.

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Stay Tuned | Run Lipstick Chemo on Let’s Talk Live

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Big news, loyal, local readers! Come Monday morning, I’m totally going to be a huge celebrity. If you want to chat or have coffee, now’s the time.  I’m sure my phone’s gonna be blowin’ up by Monday afternoon.

OK, probably not.  But Monday morning, I am going to be a guest on Let’s Talk Live on NewsChannel 8, discussing  my trip to Vinnie’s Tattoo Shop and nipple and areola tattoing after breast reconstruction. (Yes, I am going to be on TV.  Talking about nipples. What a debut!)  If you have any last minute thoughts/comments/questions on the topic, let me know, and they may make it into the segment.  And if you’re local, tune in Monday morning at 11am.  (If you’re not local, I’ll be sure to post a link so you can watch the segment online.)

So tune in Monday, and check back here next week for a link to the segment and maybe a fun recap!

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Chemo: Before or After Surgery | Neoadjuvant Chemotherapy

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It seems like I’ve been revisiting that morning in the surgeon’s office a lot lately.  After we talked about the fact that I felt pretty sure I wanted a double mastectomy, my surgeon confirmed the other thing I’d been thinking– that I would need chemo. My oncologist would talk to me about the specific drugs I needed, but my surgeon told me that I would have the option of doing chemo before or after surgery.  Again, she advised me that neither option had been shown to increase overall survival.  Again, almost instinctively, I told her that I wanted neoadjuvant chemo– chemo before my surgery.

It’s not uncommon to have the opposite reaction. Many women have a “get it out” kind of reaction and want surgery as soon as possible. But I knew that the only reason a patient receives chemotherapy is if there is a chance that even one teeny cancer cell has escaped past the original (removable) tumor. I couldn’t handle the thought that even one little cell was setting up shop somewhere else, growing and spreading even more while my body was healing from surgery.  I didn’t want to wait a few weeks for surgery and then at least six more weeks to heal before I could start chemo.  My oncologist agreed that was a reasonable conclusion, but also pointed out that she liked the fact that it would enable her to watch how my tumor responded to the chemotherapy in vivo– that is, in living tissue.  (Discovering I was a scientist early in our first meeting, I wonder if she knew how much the words in vivo would mean to me as a scientist? In vitro studies– cells in a dish– are crucial to the research process, but artifacts come along with the artificial environment, in vivo studies have so much more validity.) With breast cancer, tumor dormancy is always a big fear– that there are some cancer cells that can somehow evade chemo and sit dormant for years before they begin to grow again and cause distant metastases that can take a patient’s life. We know, in general, that triple negative breast cancer responds well to the chemo regimen I would be taking. But if I had neoadjuvant chemo, we would get to see how MY triple negative tumor responded.   My oncologist and I agreed, if even one cell of viable cancer made it through chemo, I would do another chemo regimen after surgery.  If that one cell could survive, maybe another one, one that managed to escape my breast, survived, too.  Being able to see how my actual cancer cells responded to the drugs gave my medical team such valuable information.  The only thing the pathologist could find in the breast tissue removed was some scarring– he could see where the tumor had died.  Every last cell was dead.  Of course, there are never any guarantees, but a pathological complete response after neoadjuvant  chemo is the best scenario I could have imagined after hearing the words, “You have cancer.”  If I would have had surgery first, and then chemo, it’s likely that the chemo would have been just as effective.  But with the original tumor removed, I wouldn’t have the confidence that the words “pathological complete response” have given me.  It’s always good to be in a good place, but it’s so much better to know that you’re in a good place, so that you can truly appreciate it.

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Pixie Grow Out Update

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Last week I saw a couple of women I hadn’t seen since the end of April.  They were shocked by “how long” my hair had gotten.  The kids have noticed, too, and Emma Clare thought that she should style it.  It started as one little sprout of a ponytail, but once she saw how easily she could put it up, my head was quickly covered with little sprouts.

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It is getting long, though.  And it’s getting hard to control.  I wanted to share a picture with a real hairstyle, but I don’t seem to be happy enough with it for more than ten minutes after styling it. Thankfully I’m heading to get a haircut this week, maybe Dragan can come up with something to control these locks a little better than what I came up with on Saturday! (I’ll try to have a post-haircut pic up next week!)

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How To Not Get Breast Cancer

I’m getting a little weary of the new story that comes out what seems like every other week about something that is “associated” with an “increased risk” of breast cancer.  I worry that some women might feel to blame for their breast cancer diagnosis, and that others might feel empowered because since they don’t meet the new risky criteria, they are safe and can forgo screening.  I feel like a lot of those studies end up with little validity– they scare, they place blame, they confuse.  So I headed to the CDC to see what changes a woman’s risk for breast cancer, I decided I’d let them comb through all the data and vet all the studies.

They found that breast cancer risk is decreased by being older when you start menstruating, having babies– at a younger age– and breastfeeding them, getting regular exercise, and maintaining a healthy weight.  (For the record, I was the last of my friends to get my period, had my first baby at 27– not super young, but well before my doctor would have to pronounce me of “advanced maternal age”, and I nursed my babies for a total of 26 months. I’ve always been at a healthy weight and have been regularly exercising for at least the last four years.) A woman’s breast cancer risk is increased if she has taken hormone replacement therapy, has a personal or family history of breast cancer, has had radiation therapy to the chest, was exposed to DES in utero, has dense breasts, drinks alcohol, or works the night shift.  (Again for the record, no personal history of breast cancer or benign breast disease, one (ONE!) aunt with breast cancer, no radiation therapy, no hormones or DES, maybe dense breasts, I don’t work the night shift, and I don’t drink alcohol.  Not a drop. Never have.)

Basically, if I were reading the CDC document as a how-to list to avoid cancer, I would have checked almost every single box.  Of course, I am also far younger than the average woman diagnosed with breast cancer, and triple negative breast cancer (with which I was diagnosed) is far more prevalent in the African American population.  And yet, I had breast cancer. I “did” everything right– right down to getting my period super late and being white. And yet, I had breast cancer.  I’m not sure why I bring this up– it’s not very actionable data, after all.  I guess it’s to say that even most of the associations that have been validated are not something we can really do anything about, and even if we could change some of these factors, they’re not a guarantee, either. Though valid, the association isn’t that strong.  Yes, I would love to know what causes breast cancer. But given all the research and time that has gone into its study, I think it is fair to say that it is not one thing that causes all breast cancer.  Which means that it will not likely be one thing that prevents or cures all breast cancer. Certainly, research into the causes of breast cancer will lead to better prevention and treatment of the disease. But in the meantime, women are diagnosed with breast cancer everyday, and we don’t know why.  I guess that’s why, even though data indicate that mammography may not be the holy grail it was once thought to be*, I’ll still err on the side of mammograms. Overdiagnosis and overtreatment aren’t insignificant issues, either to the healthcare system, or the individual.  But neither is cancer. Somehow, I think until I knew for sure that checking off all the boxes on my list would keep me safe, I’d risk a few extra pokes of a biopsy needle, or even a few rounds of chemo.

*This is a good discussion for the patient on the debate on screening mammograms from the Mayo Clinic

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Three Negatives Don’t Make a Positive

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There are days that will live in infamy, everyone knows what happened that day, where they were.  December 7, 1941.  November 22, 1963.  September 11, 2001.  And for me, Friday, October 5, 2012.  A few days before I’d seen a breast surgeon, she was so sure that the cyst she’d aspirated was not anything to worry about that I really wasn’t even thinking about her call.  In retrospect, I think I was very lucky those few days—I felt none of the anxiety that so many women feel waiting for pathology results.  To be sure, I wanted the fluid sent to pathology, but I wasn’t any more concerned than my surgeon.  Early the morning of the fifth, I got up and headed to the hospital for an umbilical hernia repair to make pretty again the belly button ravaged by pregnancy, having totally forgotten about the pending pathology report.  The procedure was quick and easy, and I was home sleeping off the meds by noon.  I woke to a voicemail from my breast surgeon, telling me that her office would be scheduling me some follow up procedures on Tuesday (Monday was a holiday)—a comprehensive mammogram and an MRI, and that she’d call me back when she was out of her afternoon meeting.  Admittedly, those next few hours were pretty anxiety filled.  I was super sleepy from my meds and sore on top of that, but didn’t want to go to sleep and not be able to talk to my surgeon when she called back.  When I finally talked to her, she told me that the pathology revealed an “abnormality,” and I think she wanted to leave it at that until I would see her the following Wednesday.  We had chatted in her office briefly, but she didn’t know my background.  Not quite on the level of Reece Witherspoon and the “do you KNOW who I am?” scene, I gave her a thirty second review of my background and asked her to please explain to me the nature the this “abnormality.”  (I think I’ll forever dislike that word.)  It was like she was the teacher from Charlie Brown.  “Wah-wah-wah-wah…” I had to ask her to repeat herself.  Invasive ductal carcinoma.  I caught my breath and then asked for the ER/PR/HER2 status.  ER: negative, PR: negative, HER2: negative.  Triple negative.  Another deep breath.

Now it’s time for me to don my scientist cap for a moment.  (Feel free to skip this paragraph if thinking about science makes your head hurt!) Most normal adult tissue doesn’t grow much, and when it does, the cells have specific ways of knowing when they should grow and when they should stop growing.  Cancer  cells have figured out ways to exploit or circumvent these normal controls.  Receptors on a cell’s surface are one way a cell is alerted to grow, and having far too many of these receptors can allow it to grow uncontrollably.  In breast cancer, the estrogen receptor (ER) can be over expressed leading to expression of the progesterone receptor (PR) and ultimately, uncontrolled cell growth.  A cell with too much ER tells the pathologist that the cell is using estrogen to grow. Even if the pathologist doesn’t see too much ER,  the small amount present could be very active and make a lot of PR, so again, this indicates that the cell is using estrogen signaling to grow.  Tumors that are ER and/or PR positive are considered hormone dependent.  As a class, these tumors tend to be less aggressive and can frequently be treated with good results using Tamoxifen, which blocks estrogen signaling in the breast.  HER2 is another growth factor receptor, and tumors overexpressing HER2 respond well to treatment with Herceptin which specifically targets that receptor.

And then there’s me.  Triple negative.  There is no specifically targeted therapy for triple negative cancer.  Astute followers of this blog may notice that I haven’t discussed my receptor status here before, even though it was the first question I had for the surgeon.  Put simply: triple negative is bad.  From the instant she said those words, I knew.  Chemo, probably AC followed by T.  Then a double mastectomy.  Then probably radiation.  I allowed my brain to think no further into the future than that.  Triple negative cancer is, as a class, much more serious—treatment is more aggressive and long term survival isn’t as good.  Thankfully, a PET scan a week later showed that I didn’t likely have any nodal involvement—all the cancer was contained in the breast—and that’s very good news.  My doctor was so encouraging.  I can remember her telling me that triple negative was really bad, but when caught early (like mine) it is very treatable.  She told me it would be a rough year, and then it would be over.  And so for those who care about me, those who are inclined to look things up online (yes, that includes you, mom!), I kept those words to myself.  I’ll write later about my thoughts on looking for medical information online, but in general, it’s best not to.  I didn’t want people reading all kinds of horror stories and thinking they would become my story.

In the past few weeks, in preparation for meeting with the Georgetown advocacy group, I’ve started looking into the current trends in breast cancer research, and I’ve found that triple negative breast cancer (TNBC) is a big area of research.  I’ve learned all kinds of things that I still think I might rather not know, at least not now.  It’s not that I believe that ignorance is bliss, but there is such a thing as having too much information.  I’m not sure I was ready to read everything I did.  But if you’re tempted (and I repeat, please don’t be!), I did find one report that spoke to my case specifically and was very encouraging.  It looked at cases of women who received chemo before surgery like me (called neoadjuvant chemotherapy).  Those who had no cancer cells remaining at the time of surgery, who had a complete pathological response, like me, had much improved long term survival.  I’m in good company in the shadow of what could have been a very bad situation.

And so October 5 will be a day, though probably not marked on my calendar, that will be forever marked on my mind.  Maybe I’ll mark it on my calendar after all.  I’m looking forward to being able to celebrate on that day for many, many years to come.

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