Our 10 and 13 year olds returned from a 12 day stay at their grandparents’ house in Dallas yesterday. While there, our children were treated to what amounted to a loving sleepaway camp hosted by their grandparents and aunt. As always, the big attraction for any travel to Dallas was spending time with our relatives, especially their three paternal cousins. They swam almost daily in the backyard pool, tried out fencing, watched movies, took horse riding lessons, worked on the computer, devised elaborate stories based on Lego creations, played board games, and feasted on a multitude of foods and treats at every meal.
My brother David and his son (who live in Austin) met our two at the DFW airport and escorted them back to the Bay Area. David and his son will stay with us for a week to help out while also unwinding from a luxurious Caribbean vacation. And now that our kids have returned home, they have their Austin cousin to continue the summer fun. It had been unnaturally quiet around here for the past couple of weeks and we’re so happy (understatement here) to have them back.
Meanwhile, I’ve been a little less stellar since yesterday. I’m feeling a bit achy, running a low grade fever, experiencing some tenderness in the incision area, and wanting to sleep more. Furthermore, the output from my JP drain actually doubled over the previous day, so there’s no hope I will have the drain taken out this week. I don’t know whether I’m fighting off an infection or perhaps this is more typical of how mere mortals react to surgery. After having discussed my symptoms with a couple of advice nurses, I was scheduled for an appointment with Dr. Bitar tomorrow morning to make sure everything is still ok.
A week ago, I finally summoned enough courage to take a gander down yonder under the gauze at TAFKAMRB (see Surgery Day – Part III). Let me be upfront about this: it ain’t pretty. [Sentence censured to protect my sqeamish readers.]. Keeping it all in perspective though, the Frankenstein look is still a heck of a lot prettier than a diseased breast, and I’ll gladly choose the disfigurement any day. Plus don’t forget I plan to tidy up down the road with some good ol’ plastic surgery.
In the meantime, I might as well have some fun milking a little amusement out of my new normal, so here goes.
1) Time to update the credo — When we announced I was pregnant with our last child, we were greeted with enthusiasm and friends cheerily proclaimed “three is the new two.” Clearly, however, we are overdue in concocting a new aphorism to reflect the times. Whereas conventional wisdom accepts that more perfect symmetry equates to greater beauty, our society does make allowances in admiring the askew uniqueness of Ellen Barkin’s smile, Kate Gosselin’s previous haircut, and Teri Hatcher’s mismatched eyes. But why shouldn’t we take the next step and celebrate people with even grosser imperfections? Let me join the ranks of comely notables Heather Mills, Aron Ralston (from the book Between a Rock and a Hard Place and movie 127 Hours), and Bethany Hamilton (who returned to surfboarding just 1 month after her left arm became a tiger shark’s morning snack) as we proclaim: Asymmetry is the new symmetry!
2) Keeping up with the sisters — Did you know that in ancient Greece the word Amazon was derived as a mazo or without breast? Furthermore, rumor has it the warrior superwomen routinely removed their right breasts to improve archery skills. Looks like I have unwittingly qualified myself to join my mythological sistren, if not for the fact that I’m a foot too short. But this does propose another sport to explore after I fully recover: archery biathlon!
3) New career as super-hero —
Faster than a rapidly dividing cancer cell,
More powerful than a heinous disease,
Able to restore sanity with a brisk morning walk,
Look, over on the jogging path!
It’s a Picasso painting!
It’s Julia Child, Shirley Temple Black, Nancy Reagan, Montel Williams, Christina Applegate, Betty Ford, Olivia Newton-John, Lynn Redgrave, Sandra Day O’Connor, or Richard Rountree! (Yes, all these people had mastectomies.)
Yes, it’s Unimast, lopsided patient from Kaiser Permanente Santa Clara who returned to Palo Alto missing body parts but in full possession of the resilient spirit typical of most mortal women. Unimast, who can slash away years of malignant growth with a single operation, continues the brave fight against residual uncontrolled cell division and will one day triumph in the name of truth, justice, and the Amazon way.
Oh what a difference a day makes. I visited with Dr. Bitar yesterday morning and detailed my new symptoms from the previous couple of days. I think my body was fighting the infection off somewhat competently even before I went in to see my surgeon, because my fever and body aches had decreased a bit, I was more energetic, and the output from my drain suddenly plummeted. But TAFKAMRB was still quite warm to the touch and very sensitive, though fortunately no longer throbbing.
Noting that the skin around the drain was reddish, bruised, and puffy and taking into account the mostly steady and dramatic drop in drainage, Dr. Bitar elected to remove my JP drain immediately and prescribe antibiotics. Fortunately, the drain removal involved minimal discomfort and was completed in under 2 minutes. A few hours later, my pain level had almost returned to its original numbness. Aaaaaaahhhhh.
Earl made sure to ask whether my infection might be related to my walking (answer: no). I also took the opportunity to inquire whether Dr. Bitar had an easy time finding my sentinel lymph nodes, since she ended up removing 8 instead of the expected 1-4. She wryly replied that in fact it was difficult to find them, and removed what she thought was 1 node plus maybe 1 more, where the 1 more ended up being a total of 7 (they can be pretty small). Of the 8 nodes, 4 were died blue (and therefore true sentinel nodes) and the remaining 4 were uncolored. My right arm has not a full but a respectable range of motion, considering the number of lymph nodes removed. Special exercises and, even better, swimming in a few weeks will help reduce these limitations. Anyway, I can’t complain since I’m thrilled to know that all 8 nodes were clear.
I am closer to normal.
True, I still cannot raise my right hand as high as my left (~6″ difference). Yes, I am not unlike your average toddler in dozing off to a regular afternoon nap. And, sure, those unfamiliar pectoral contractions stunned me tonight with their odd rolling sensation when I was chilled biking home in the cool evening air.
But just 14 days after major surgery wrought a significant, permanent, and life-saving change to my anatomy, I feel great. The removal of the JP drain, the effectiveness of the antibiotics on my infection, and the return to normal showers all contributed significantly to a marked improvement in the past few days alone.
Just this morning, I returned to walk the Stanford Dish (close to the same route we used for the Bosom Buddy Walk) with my brother David … at normal speed. I sometimes forget (particularly when I am sitting) that anything is different, that I am different, especially since there is no pain. If it weren’t for Earl’s periodic reminders of my doctor’s prescribed limitations, I could easily push past the delicate threshold between comfort and overdoing, between recovery and setback.
It’s all just in time, by the way. Tomorrow afternoon, Earl and I will be meeting with my oncologist, Dr. Jeske, to discuss the possibility of any adjuvant, or additional, therapy. You can bet I will be bringing in yet another long list of questions, detailed and culled over the past week since the receipt of my pathology report. Chemotherapy, radiation therapy, targeted therapy, cardiotoxicity, cytotoxicity, neutropenia, alopecia, clinical trials, standard of care, disease free survival, overall survival, recurrence, prognostic subgroups: it’s a lot to mull over.
I met with my medical oncologist, Dr. Jeske, yesterday afternoon. Earl recorded our conversation so that I could concentrate on comprehension rather than on note taking. She first went through the pathology report with us and then proceeded to a physical examination.
Dr. Jeske was very happy with the pathology report because of the negative nodes and the “microscopic” size of the invasive tumor. She told us that when she first met us at the breast cancer clinic (see Time to Meet My Oncology Team) well before my surgery, experience led her to guess that not only would they find invasive cancer within my extensive DCIS, but that it would be on the order of T1b or T1c (0.5cm – 2cm) or even much bigger or in the nodes. She admitted to being a pessimist, which is key to remember for the following.
“It’s true [that your cancer is Her2+], but I’m not sure there’s a lot we can do a lot about it. The cancer is so small, that the risk of recurrence is incredibly low, and so then you start to weigh risks and benefits, and the risks of treatments against the benefits of treatments.”
“When the recurrence rate is as low as this kind of a cancer’s recurrence rate is, which is probably on the order of 10%, then the benefits of treatments like chemotherapy and Herceptin start to become minimal. And the risks, of course, are real. These treatments all have side effects, all have toxicities. And so there is no real meaningful expectation that there would be enough benefit from treatment to undertake it.”
“We are left with sort of an uncomfortable position ’cause we’d love to have something we could do. We’d love to use some hormonal therapy, we’d love to use something … But the reality is your cancer is too good to use any treatment because the benefits of the treatment really don’t outweigh the risks of the treatment.”
“Now you’ve done a mastectomy on this side. So you’ve dramatically lowered your chance of this cancer ever coming back on this side, by nearly 100%. There is no such thing as 100% in medicine, but nearly 100%. The other side though is a real risk. That’s where your age really plays in. You know, the reality is we do have to watch that other side very closely over time ..”.
“If you were going to recur and we were playing the odds, where are you going to recur. By your path report, the most likely place for you to recur at this point is with a noninvasive cancer under that [superficial/skin] margin. That we’re going to take care of. I mean, I’m not comfortable with that just being the way it is right now. We either have to radiate it or we have to, which I think is reasonable, just take it out with the reconstruction. And then it’ll be gone, too. And there may be nothing in there. They may take it out and find no cancerous cells, which is a very common phenomenon. Especially because when you have cancer right at the margin, even for a positive margin, and you cut there, the inflammatory response of the healing process can often eliminate any residual cancer. So it’s very possible that when they do the reconstruction we won’t find anything …”
“That [mastectomy site] is probably, as we’re looking at that path report, your bigger chance of recurrence risk [which] would be a local recurrence, rather than a systemic recurrence. There isn’t anything thankfully [in the path report] to suggest that a systemic recurrence is likely.”
So there you have it. She encouraged my seeking a 2nd oncology opinion if I wanted, and at my request she also sent in a request for another pathologist to look at all of my samples (not just the invasive portion – there were two pathologists looking at that). I have set up not one but two additional appointments for the second week of July. One is with another Kaiser oncologist in Walnut Creek, at the other large Kaiser breast cancer center in Northern California (besides Santa Clara). The second appointment is with a medical oncologist at UCSF whose research specialty is actually Her2+ breast cancer, Mark Moasser [a].
Dr. Jeske said my overall risk of recurrence is in the single digits, citing a recent Kaiser Permanente study . Remember that she is a pessimist but still recommends no chemo, no radiation, nothing (aside from removing some extra skin during the reconstruction). So that makes me feel better about taking no additional action. However, I will be analyzing data from the Kaiser and other studies to further evaluate my risk in the next week or two before gathering recommendations from the other oncologists and then making a more educated decision about future treatment.
BTW, Dr. Jeske said that the incision area looks fantastic, and that I am “well above the curve” in healing. She said that whatever I have been doing is working and to keep it up. (This includes my self-mandated 5-6 mile a day walk.)
At my appointment on Tues., Dr. Jeske mentioned a retrospective study  which looked at all 17,000+ breast cancer patients treated at Kaiser Permanente Northern California during the time period 2000-2006. They divided those patients into subgroups to study the recurrence rates for women with very small Her2+ invasive tumors but no lymph node involvement. To better understand my specific risk, I contacted the study’s authors requesting additional information. One of the researchers called me back this morning and here are the facts pertaining to my case (0.3cm tumor, ER-/PR-).
Of the 17,000 patients, 116 had invasive Her2+ tumors <=0.5cm in largest dimension (<1%!).
Of the 116 patients, 18 had tumors <0.1cm and 98 had tumors >= 0.1cm and <= 0.5cm.
Of the 98 patients, 7 had chemo, 8 had chemo + Herceptin, and 83 had neither chemo nor Herceptin.
Of the 83 patients, 36 were ER+ and 47 were ER-.
Of the 47 patients in a 5 year period, 3 had local/regional recurrences, 1 had a distant recurrence, and 43 had no recurrence.
Of the 3 local/regional recurrences, 2 had tumors>0.3cm and 1 had tumor=0.2cm (but had declined part of the recommended treatment – radiation to treat an unclean margin).
The single distant recurrence occurred in a patient whose tumor was 0.5cm.
So of this tiny subset of 47 [Her2+, ER-, >=0.1cm, <=0.5cm] patients like me, foregoing adjuvant chemo and/or Herceptin treatment resulted in 1 distant recurrence and 3 local recurrences. With the exception of the 1 case where the patient chose a suboptimal follow-up treatment, all 3 remaining recurrences occurred in patients with tumors 33-66% larger than mine. Even if we include those 4 recurrences,
P(5 Year Recurrence Free Interval | [T1aN0M0, ER-, Her2+, No Chemo, No Herceptin]) = 1-(4/47) = 0.915, so there would be an 8.5% chance of my having a recurrence (local or distant) in the first 5 years if I choose no adjuvant treatment.
Clearly, if you discount the recurrences where the original tumor size was larger than mine, you get an even more favorable number:
P(5 Year Recurrence Free Interval | [>=0.1cm, <=0.3cm, N0M0, ER-, Her2+, No Chemo, No Herceptin]) = 1-(1/44)=0.977, so a 2.3% likelihood of recurrence (local or distant) in the first 5 years if I choose no adjuvant treatment.
Dr. Jeske contends that neither 2.3% nor 8.5% warrants the risk of significant side effects from chemotherapy or Herceptin. I will be asking the other oncologists whether they agree.
Rats. I just checked. I neglected to put that clause into the marriage vows Earl recited exactly 16 years ago at Stern Grove in San Francisco. Luckily for me, he’s an engineer and not a lawyer.
Here’s what he (and I) did promise:
“I, Earl/Susan, take you, Susan/Earl,
to be my partner in marriage as you have been my partner in life.
To continue to love and respect you
Give thanks for you,
Serve you with my wit, my strength, my heart, and
Stand by you always.
I will continue to listen to you
Labor with you
Believe in you even when you doubt yourself
And hold myself beside you always.”
Thank you, Earl, for the 3 children, 1 house, good times, bad times, richer, poorer, countless arguments (but many more agreements — especially on the important stuff), and (I’m being serious here) 16 years of marital bliss (and many more to come). And thanks for reading between the lines.
Lovingly and cherishingly yours,
Last weekend I finally got around to reading Lance Armstrong’s inspiring It’s Not About the Bike. The book chronicles his struggle with late stage testicular cancer and the amazing tale of recovery and cure, winding through his nascent biking career and triumphing (post-cancer) with his lengthy Tour de France domination, doping notwithstanding. While absorbed by the details about his diagnosis and treatment, I was also amused by a few coincidences in the book.
I had already heard that he spent his teen years in Plano, TX, but read that he actually studied at the same high school, albeit 5 years later: “Plano East [Senior] High School, one of the largest and most football-crazed high schools in the state, a modern structure that looks more like a government agency, with a set of doors the size of loading docks.” Yup, that sounds like my alma mater. Lance Armstrong, however, is not a Plano East graduate. A 6-week trip to Colorado Springs and Moscow for training and the Junior Worlds during the spring semester of his senior year apparently didn’t pass muster as an excused absence with the Plano ISD. Faced with the arduous prospect of making up 1.5 months worth of school work in short order, he instead transferred to a private school and graduated on time.
Before he moved to Plano, he lived with his mother in an apartment building just south of Plano, in Richardson. His mother purchased the young Lance his first “serious” bike, a Schwinn Mag Scrambler, across the street at Richardson Bike Mart. Later, after his move to Plano, he continued his affiliation with the store, competing on its club team and supported by its owner. Where’s the coincidence? Earl grew up just down the street from the Bike Mart.
After high school, Mr. Armstrong cycled through Europe and Japan and set down roots in Austin, TX, in a small house near UT Austin, where Earl and I had just finished college. Call me paranoid, but does this all not verge on stalking? Next thing you know, he’ll be purchasing a house in our neighborhood, right next to Mark Zuckerberg’s current digs!
Reading about how he forced himself to continue biking throughout grueling, poisonous chemo sessions, I was inspired to test whether I could manage a ride 3 weeks after my own surgery … yes! I began by tracing the same route Anna and I took the day before surgery, from Stanford through Menlo Park, Woodside, Portola Valley and Palo Alto. Still energized close to the end of that first stage, I peddled on through Los Altos and Mountain View, until my rumbling stomach guided me back home. At 25 miles, this petite Tour de France was just 1% of the real deal but no less significant. Cycling back along my own Champs-Élysées, I grinned with the realization of yet one more common link between Lance Armstrong and me now far more rewarding than any yellow jersey: cancer survivorship.
I am currently in the middle of a two-week effort to gather information and opinions from 4 additional oncologists and 1 more pathologist.
1) This week — I conversed via email with the lead author on the aforementioned Kaiser study . Dr. Fehrenbacher, a medical oncologist at Kaiser Vallejo, provided me with more specific data from his research so I can better evaluate the odds of recurrence for my situation. He also recommended closer pathological scrutiny of my DCIS lesion to more exhaustively screen for any other invasive cancer that might be lurking in the 5.5 x 4.0 x 1.8 cm mass. The discovery of any additional, larger invasive tumors would materially change my adjuvant treatment plan. (Currently, my primary medical oncologist recommends no adjuvant treatment, based on the 3mm invasive component and cancer free lymph nodes.). Dr. Fehrenbacher emphasized the need for further surgery to remove extra skin close to original location of tumor in order to create wider clear margins and deemphasized the call for prophylactic contralateral (left) mastectomy.
2) Next week ??? — waiting on 3rd Kaiser pathologist to look over breast tissue.
3) Next week ??? — anticipating recommendation via email from Stanford medical oncologist specializing in breast cancer in response to my case synopsis which I submitted this week.
4) Tues., 7/12 — seeing medical oncologist at Kaiser Walnut Creek for opinion on adjuvant therapy.
5) Wed., 7/13 — meeting with medical oncologist (Her2 specialist) at UCSF for opinion on adjuvant therapy, especially Herceptin.
6) Fri., 7/15 — conversing with genetic counselor and geneticist at Kaiser San Jose to review family cancer history, discuss genetic testing, and submit blood sample for BRCA 1 & 2 mutation testing.
7) September ??? — hearing from surgery scheduling dept. hopefully next week. As of right now, it appears surgery might possibly take place in September. As with the originally planned surgery, calendars for both the breast surgeon and plastic surgeon need to be coordinated for what will be an approximately 623 minute surgery. Any chemo or Herceptin therapy would further delay this surgery for reconstruction and additional skin removal (to remove close margin).
I’ve hit the slot machine carcinoma jackpot. This recent study concludes that Asian American/Pacific Islander (ding!) women (ding!) born in California (ding!) during the 1960’s (ding!), especially those of Chinese and Filipino (ding, ding!) descent, are much more likely than originally thought to develop breast cancer. Overall, Asian American/Pacific Islanders are 62% more likely than Caucasians to develop invasive breast cancer. Filipinas in particular were 72% more likely (Chinese 23%, Japanese 59%) than their White counterparts to be diagnosed with breast cancer.
I myself bought into the stereotype that Asians are less likely to develop many kinds of cancer. Our foremothers ate more vegetables and less meat, were more active, weighed less, had more babies, breastfed those babies, and led generally healthier lifestyles. Turns out it doesn’t work out for us US born kids. We’re overachievers in many ways, including it now appears, the incidence of invasive breast cancer.
I first noticed an over-represented proportion of Asians in a breast cancer group in the Kaiser study. Although the Kaiser membership was 57% White, 16.7% Hispanic, 16.9% Asian, and 7.7% African American, of all Asian invasive breast cancer patients 19.9% were Her2+. For Whites that figure dropped to 12.1%.
Yeah, we’ve got the sunshine, we’ve certainly got the tans, we might be the cutest girls in the world, but more breast cancer’s in the clan.