I regretfully report I have but a sporadic history of performing random acts of kindness. My good deeds are usually of the garden variety: feeding coins into an expiring parking meter, holding open doors, letting other people go in front of me in line, taking pictures of tourists (with their cameras), helping a fellow parent with a rambunctious child, handing out extra coupons/tickets, or being extra polite or friendly when the other party is most definitely not. I don’t volunteer when I’m in a hurry or struggling with my own rambunctious child, and the gesture is never extravagant or particularly noteworthy. I have been on the receiving end of many RAOK, and every single time, I am reminded of why I should offer more often. Just like today.
Regardless of what I wrote in my Unimast post, I have been more self-conscious about my appearance over the past month. Truly, it’s hard not to be when the landscape has changed because the mountain has been replaced by a valley. For comfort’s sake, I have been sporting jog bras for the past 4 weeks, compensating for my new deficiency with a carefully arranged sock or some other convenient stuffing, just like a hopeful prepubescent girl.
Enter Whole Foobs. No, that’s not the real name for the breast prosthesis boutique I had visited just before my surgery (see Foobfest post), but it really should be. (And perhaps Foob 4 Less for a sister outlet store. With advertisements on the Foob Channel.) Anyway, I returned last Wednesday to be fitted for my prosthesis and accompanying bras. With more purpose and less jest than my last (whole body) trip, I earnestly investigated my choices, understanding they would have to serve me for at least a couple and perhaps many more months until I can have the reconstructive surgery. My needs more apparent than during my first visit, the products seemed less comical, the proprietress more compassionate and genuine, my mission more directed. The mirage offered by the new fake breast soothed my wounded ego and permitted me the opportunity to reemerge from my recent wardrobe of loose t-shirts and baggy tops, chosen for masking ability rather than fashion sense.
And then came today. Now more confident with my new acquisitions from Whole Foobs, I dared to wear one of my favorite summer outfits: a swingy, clingy, empire-waisted dress the color of sunshine paired with strappy white sandals. Just before noon, I was finishing up shopping at Trader Joe’s before dashing home to meet our youngest after his playdate. As I reached for a carton of organic free-range eggs, my grocery list reverie was interrupted by a woman confiding to me in a hushed tone. She complimented me on my outfit (Me! Unimast!), saying that I looked stunning! With a spring in my step and my crushed ego re-inflated, I promised myself to pay it forward. Who knows? Maybe I can make another cancer patient’s day, too.
I met with Dr. Moasser, a medical oncologist specializing in Her2 breast cancer, at UCSF Medical Center yesterday. He gave me a short physical exam, reviewed my mammogram, MRI, surgical, and pathological records with me and then issued his opinion. Despite the positive factors (clear nodes, small invasive component), he recommends a combination of Herceptin + chemotherapy [b] due to the aggressive nature of Her2. He offered 3 different regimens:
1) ACTH — Adriamycin and Carboplatin followed by Taxotere and one year of Herceptin (higher likelihood of heart toxicity side effect)
2) TCH — Taxotere and Carboplatin with one year of Herceptin (lower angiotoxicity regimen than #1)
3) Taxol/Herceptin — Lower toxicity than both #1 and #2, becoming more popular for lower recurrence risk cases.
He said there is a roughly 15% recurrence risk for my case with no chemo or Herceptin, based on the MD Anderson study  of recurrence risks for node-negative, <1cm tumors; that research found a significantly higher rate of recurrence of Her2+ breast cancer, compared with otherwise similar Her2- cases. Looking back at my notes for that publication from a couple of weeks ago, I think the 15% figure included all invasive tumors up to 1cm in size, thus both T1a and T1b tumors. Keep in mind the T1b (>0.5 cm, <1.0cm) are generally associated with higher risks of recurrence when compared with T1a (<0.5cm).
Dr. Moasser postulated that with such an extensive DCIS lesion, it is very possible for more invasive components to have been missed by the pathologists, simply because it’s infeasible to exhaustively examine every cell in a sizeable sample divided into a finite number of slices. These additional invasive components, furthermore, could be larger than the 0.3cm x 0.2cm tumor that was found, which would then put me at an even higher risk of recurrence.
In other news, Dr. Jeske said through email: “They have resubmitted additional sections from your pathology specimen and these show no evidence of any invasive cancer. In addition, the entire specimen was reviewed by a second pathologist who concurs with the diagnosis.”
On Wednesday I drove to the Kaiser Walnut Creek facility to meet with another oncologist, Dr. Huang. She inquired about the reason for my visit (2nd opinion) and began the conversation by concurring with Dr. Jeske’s recommendation of no further treatment. She said the data for small-sized, node-negative, Her2 positive breast cancer is limited because of its relative infrequency. Since there are not many cases, there is less call for research and therefore very little data on outcomes with or without treatment. She stated that her department’s oncology practice is literature-based: published results -> treatment; no published results -> no treatment. She said that if I do insist on pursuing adjuvant therapy, Kaiser would provide treatment, and she would recommend TCH (taxotere-carpoplatin-Herceptin).
In addition, I spoke with Dr. Moasser over the phone yesterday to clarify a few additional questions. I asked whether I could email him the Kaiser study  so he could compare those more favorable statistics with the ones from studies which he cited on Wednesday. He declined, upon realizing the data came from a mere conference poster versus a peer-reviewed journal paper. Also, he said that research is still inconclusive about whether a higher IHC score (measures Her2 status; possible values are 0, 1+, 2+, and 3+; mine is the highest at 3+) correlates with better Herceptin response. Finally, I asked about the discrepancy between the 15% recurrence rate he quoted from the MD Anderson study  and the 13.6% figure I actually found in that paper for risk of recurrence for both T1a and T1b, node-negative, Her2+ patients. He said 15% was his educated guess given I’m only T1a (improving the 13.6% figure) but also hormone receptor negative (worsening the 13.6%). He planned to fax Dr. Jeske his patient notes (attempting to persuade her of his opinion) yesterday afternoon.
If you were offered a crystal ball which could predict whether you will eventually develop cancer, would you accept?
Approximately 10% of breast and ovarian cancers can be linked to some hereditary predisposition. Some of the signs that a person might be at this type of risk include personal or family history of:
1) Breast cancer under age 50
2) Ovarian cancer
3) Multiple breast cancer patients in a family
4) Breast cancer along with Central or Eastern European Jewish ancestry
5) Male breast cancer.
Today I went to have a small vial of blood drawn so that I could submit a genetic sample to Myriad Genetic Laboratories in Salt Lake City. Over the next few weeks, scientists at the lab will be closely scrutinizing my DNA to help determine whether a mutation or mutations in my genetic makeup might have been at least partially responsible for my breast cancer. In particular, they will be looking at two tumor suppressor genes called BRCA1 and BRCA2 for any deletions or alterations. Mutations in these two genes are responsible for the majority of hereditary breast and ovarian cancers.
A mutation does not mean that the carrier will develop cancer; it merely implies an increased risk. For example, the probability that a woman without a mutation in BRCA1 or BRCA2 will develop breast cancer before age 50 is roughly 2%. A change in the genetic code, however, raises that <age 50 probability to the neighborhood of 33-50%. The risk for breast cancer up to age 70 is even more significant: without a BRCA change, it is 7%, but with an alteration in BRCA 1 or 2, it jumps to 87%. This would be a 13% chance that an affected woman would not develop breast cancer by the age of 70! Mutations in BRCA1 and BRCA2 also pose additional risk for ovarian cancer (2% for mutation-negative and up to 44% for mutation-positive patients), and to a lesser extent, for colon, earlier-onset prostate, pancreatic, and other cancers.
The gene mutation is handed down with 50% probability from either mother or father to child. My family history exhibits at least a couple of the risk signs listed above; Earl’s family shows even more. Both I, and Earl in the near future, are being tested not only for our personal health concerns, but even more for the welfare of our children and their children.
A few important caveats must be allowed. Test results range from negative to uncertain to positive. The uncertain category means that some alterations to the genetic code were detected, but the implication of those is unknown (i.e., no yet known effect on cancer risk). Even if the test result is negative, there might be a mutation in a completely different gene causing hereditary breast or ovarian cancer. And, again, testing positive does not indicate certainty of an eventual cancer, merely an elevated risk. Even if someone doesn’t end up developing cancer in his/her lifetime, that person’s mutation can still be passed on to children, thus “skipping” a generation.
So perhaps the prognostication is closer to a Magic Eight Ball than a crystal ball. Just as likely as “Without a Doubt” is “Reply Hazy – Try Again.” Personally, I’m hoping for “Outlook Good.”
Sorry if this post is a bit cryptic, but I wanted to mention that I had a long and interesting phone conversation with Dr. Jeske today. I have been mulling the adjuvant therapy decision for the past couple of weeks, seesawing between for and against, and talking with her might have helped me to clarify my thinking. I still have to do a bit more research and check out some numbers that she gave me. Anyway, I believe I might be on the cusp of making heads or tails of my situation, which is fortunate timing since I was about to start flipping a coin.
In the meantime, I heard from the surgery scheduler today. If I decide to forego chemotherapy and radiation therapy, I am to return to the operating room for a marathon re-excision plus free-TRAM reconstruction procedure on Monday, September 19, starting at 8.30am and running about 10.5 hours (I made a mistake in an earlier comment, now corrected, where I thought the surgery would be a mere 8 hours. Silly me!). Alas, this is not the type of marathon I had planned on doing this fall, but I’ll run with it.
Judging by the number of phone calls I’ve been receiving over the past couple of days, I feel I should let everyone know that I’m still alive and kicking but have been sucked into a black hole of indecision. Or perhaps that’s the wrong analogy. I’ve made up my mind several times with conviction, only to retreat upon learning a new statistic or hearing a different opinion. So maybe I’ll instead say that I’ve been surfing in an ocean of treatment studies and risk data, riding the crests and hoping not to drown.
Last Thursday I spoke with Dr. Jeske on the phone for about an hour. First, she described the latest pathology review. Whereas the specimen had originally been sliced into pieces no thicker than 1cm, it was newly cut into pieces no thicker than 5mm. All of the sections were viewed by one or two additional pathologists who found no additional foci of invasion. This news was quite reassuring, because I can now conclude there are most probably no hidden invasive tumors exceeding 0.5cm in size, thus removing an uncertainty of great significance.
To answer some of the questions about treatment, risks, and side effects I had emailed her, she said that the leukemia risk with both AC-TH and TCH is real and not just theoretical. A local recurrence might be treated with re-excision, radiation, or possibly systemic (chemo/Herceptin) therapy. Herceptin, and sometimes the chemo drug paired with it, is cardiotoxic. It can affect up to 22% of treated patients significantly, reducing the left ventricular ejection fraction (the amount of blood pumped out with every contraction), though not atypically with reversibility of damage. Neuropathy (loss of feeling or function in the fingers and toes) is another serious and common side effect, and of course death is a nasty side effect that is always possible when injecting poisonous substances into one’s body.
She had consulted with several colleagues about my case and all of them concurred on not recommending adjuvant therapy. She does have one fellow oncologist who would treat me if I insist, but it would be against that physician’s better judgment. When I asked what a reasonable recurrence risk vs. treatment risk threshold might be (10%? 15%?), she replied that there is no magic number and that the level of recurrence risk at which one would decide to treat is a very personal decision, but that my level might be lower than others’ since I’m younger and healthier than many patients as well as hormone receptor negative.
BTW, my deadline for starting chemo would be two weeks from today, exactly eight weeks after surgery. Of course, I really have maybe just a few more days to work out a plan since it would take time to finalize treatment with a doctor, possibly have a port inserted (for easier injections), and schedule the first injection. So no pressure there.
In summary, if the cancer doesn’t kill me, the stress might. Or, quite honestly, if I don’t stop pestering her with questions soon, Dr. Jeske just might have to do it. At least then I won’t have to make up my mind.
Whoohoo! Yesterday marked the 6 week post surgery mark, so I celebrated the lifting of my exercise restrictions (no running, no swimming) and went out for a low-key 5 mile run with Truc. The weather was a bit cloudy and cool as we zigzagged around Stanford campus, dodging groups of picture-snapping tourists and sunblock-smeared and backpack-laden summer campers. Walking is a effective form of exercise, but it’s not nearly as efficient time-wise in burning calories as running. I’ve been spending around 1.5 hours every day walking or biking and it’s liberating to pare my workout back down to under an hour.
Today Anna and I went for my first swim since the day before surgery. The transition back into swimming was not as easy as for running. This is probably because I’ve kept up a lower body workout in the past few weeks with plenty of hill-hiking and just plain old walking but I’ve been extra gentle with the upper half of my body especially around the incision area and also to prevent lymphedema. Anyway, I took it easy in the pool and found that the range of movement of my right arm is plenty wide enough for the backstroke. Also, I’m not a very good swimmer but prior to surgery I regularly swam laps for 40 minutes with no great difficulty. Today, however, I felt a little off-form and ended up swimming every other lap without my arms. Hopefully tomorrow will be better.
I was so anxious to get back into the pool that I didn’t even wait for the new mastectomy-friendly swimsuit that won’t arrive from Lands’ End until later today. The new swimsuit will have a special foob pocket already built in. This morning, I didn’t want to scare anyone at the pool with my misshapen form (in actuality, there was only one other swimmer when we arrived and it was still dark outside), so I crudely carved a breast shaped blob out of an (unused) O-Cello kitchen sponge and safety pinned it into an old swimsuit. I did give Anna a heads-up to please retrieve any purple sponges she might find floating in the pool should mine inconveniently dislodge.
Oh, sorry. I suppose I’ve had the grocery sack question answered for a while already (paper never, plastic occasionally, cloth almost always). The decision that I have focused on recently, of course, has been whether I want to go through adjuvant therapy.
Answer: Yes. But no one at Kaiser Santa Clara wants to treat me.
So Dr. Jeske has put in a referral for Kaiser Redwood City to see whether anyone at that facility will do it. If Redwood City doesn’t work out, I can also try Kaiser San Jose. I know at the very least I could go back to Kaiser Walnut Creek. The Walnut Creek physician I met with for a 2nd opinion, Dr. Huang, implied that she would treat me even if she didn’t recommend chemo or Herceptin. However, I don’t really care to drive >1hr each way to get weekly treatments for 4 months and then every 3 weeks for the rest of the year.
UCSF is an option for treatment since Dr. Moasser is the single physician so far who actually recommends adjuvant therapy. The big (ok, enormous) downside would be having to pay out of pocket outside the Kaiser system, as I’m not too keen on forking over what I’ve read can be $150,000 for the Herceptin alone (not including the chemo and other drugs, oncologist, infusion facilities, etc.). Making that long drive to Walnut Creek is starting to look a world more attractive.
Conclusion: further treatment is most definitely not yet in the bag.
On Dr. Jeske’s referral, I am scheduled to meet with a medical oncologist at Kaiser Redwood City on Monday morning to see whether someone there would like to treat me. I will be armed with copies of the Kaiser, MD Anderson, and Canadian studies along with Dr. Moasser’s letter which estimates my recurrence risk at 15% and presents a case for chemo + Herceptin therapy. With the help of my supporting documents, I hope to be able to convince Dr. Semien (who I believe is the breast cancer specialist at the Redwood City facility) that despite the diminutive size of my invasive tumor, the positive Her2 status, negative hormone receptors, and large DCIS size (which implies uncertainty regarding exact size and number of invasive component(s)) are all compelling enough factors together to amplify assessed risk and therefore warrant treatment. The clock is still ticking. I have just 11 more days within which to start treatment.
The culprit: Colonel Mustard in the kitchen with two soup spoons and a dinner fork.
Of all the ridiculous accidents.
I have been a model patient in taking care of my right arm to help prevent lymphedema after having the 8 lymph nodes removed: no vacuuming or weed picking, no heavy lifting, no blood pressure cuffs, no blood draws, no repetitive motions (aside from swimming, which is good, right?), no professional arm wrestling. I actually think twice before engaging in any even remotely risky everyday activities because I have to baby this dominant limb of mine. But I didn’t hesitate for a second when emptying the dishwasher this morning. Aside from the dish running away with the spoon, what can possibly go awry when moving dishware 4 feet or less to its storage location?
See, that’s what I thought, too. So as usual I emptied the bottom rack and placed the cutlery baskets on the counter while I put the glasses and mugs away, and just as I was almost finished, my right arm journeyed down from the upper cabinet and struck the felonious spoons and fork dead-on with my funny bone. Only there was absolutely nothing humerus about it. Clutching my stunned elbow and seeking refuge in a fetal position on the kitchen floor, I waited for the familiar but 10-fold intensity of the frenetic neurological messaging from elbow to pinky and ring fingertips to die down. And waited. And waited some more.
After about 5 minutes, I dragged myself up, kicked the dishwasher closed, and collapsed into a chair while still cradling my arm. At Earl’s urging, I called a Kaiser advice nurse and explained the situation. She asked some pointed questions (you have to love these nurses; I’m sure they get all kinds of crazy medical inquiries day after day but they always mete out helpful and caring advice as if you don’t really sound like a lunatic or hypochondriac) and suggested that I take 2 Ibuprofens and ice the elbow to help prevent swelling (which is bad news if one is trying to avoid lymphedema).
Now a few hours later, the pain has disappeared except when I try to bend my elbow all the way. Earl was sufficiently worried about me that he insisted we postpone our fun outing to SF with the kids. We were planning to bring our bikes to Fort Mason, pedal along the Marina, through Chrissy Fields, over to Fort Point at the base of the Golden Gate Bridge, and then return just in time to grab dinner at a large conglomeration of specialty food trucks at Fort Mason. We’ll try again tomorrow (if anyone wants to join us, shoot me an email), but by then the food trucks will be gone. Foiled by Colonel Mustard, yet again.