After more than a week of somewhat tense waiting for my MRI results interspersed with polite emails and phone messages from me inquiring about the results, I finally received a call from the surgery department with the news.
Thankfully, there was nothing visible in the left breast. The area of irregular calcifications (where cancer is suspected) in the right breast was larger via MRI than mammogram, but that was not unexpected. MRI tends to provide better detection in cases of high-grade DCIS like mine. It can overestimate the extent of disease, but of course we won’t know the real answer until after my surgery and the pathology is done.
The report also said that my lymph nodes (left and right) were slightly enlarged (especially on the right). This could be attributed to skin abrasions (both sides) and reaction to the biopsy (right). At any rate, the plan is to take out at least one or two lymph nodes at my surgery and check for cancer involvement. I might have a CT scan to further evaluate my nodes prior to surgery, pending a request by my oncologist if it’s appropriate.
The other news was that I’m currently #2 on the list for surgery scheduling. All of a sudden apparently there are several women awaiting mastectomy + reconstruction, so the scheduling team is working on opening up more spots for all of us. Is breast cancer diagnosis seasonal?
Who knew? Even as a cancer patient, I’m a green consumer.
I try to be good to the Earth. I tote my groceries home in reusable bags, bike or walk whenever I can leave the car at home, eschew resource intensive meat and poultry, frequent my nearby farmer’s market, patiently separate out plastics, metal, and paper from the trash, keep the thermostat down in winter months, and periodically donate money to Forests Forever.
But apparently I’m going one step farther than your typical consumer and am now poised to extend my environmentally conscious habits to … my own body!
Cancer in the breast? Have a mastectomy. — Reduce!
Wanna know how far the cancer has spread? Use the breast tissue for diagnosis. — Reuse!
Silicone implant? No need, when I already have a naturally replenishing supply of rebuilding material, my own abdominal fat. — Recycle!
Top that, Ed Begley, Jr.!
June 22nd it is. I could have had a simple mastectomy with no reconstruction one week earlier (that was the earliest available), but I declined that option.
My preop appointment is on June 16. I check in at 6.30am on June 22 with my actual surgery starting at 8.30am.
This afternoon, I had a long, very informative (and positive) phone conversation with Dr. Kavanagh. Here are some notes on our discussion (her quotes aren’t exact; I paraphrased extensively). Feel free to skip the rest of this post unless you’re especially interested in the nitty-gritty.
1) Should I be concerned about the 8 week time span from diagnosis to treatment?
“No. Studies [See links at side.] have shown that even a modest wait between breast cancer diagnosis and treatment resulted in no change in prognosis.”
2) Is it possible or likely that there is a >1cm tumor hiding in the right breast that we cannot visualize via mammogram or MRI?
“No. It is very unlikely we will find any masses >1mm. The MRI can find masses down to 1mm in size or smaller and nothing was detected.”
3) If my nodes are positive, is there any reason to not do the reconstruction?
“Based on the MRI, there is maybe a 1% probability of lymph node involvement. If a node is positive, we have to assume there are some foci of invasive cancer. In general, if 4 or more lymph nodes are positive, radiation is very beneficial. So you could decide prior to the surgery that if we find involvement in multiple lymph nodes that we should delay reconstruction until after radiation treatment to prevent radiation damage to reconstruction.”
4) Is there any reason to cancel a prearranged trip to Texas?
“No, as long as you can be contacted by phone during your travel and return by the week or so before the appointment to attend a preop appointment.”
5) The MRI shows the “mass posteriorly broadly contacts the … pectoralis major fascia.” Will you have to resort to a radical mastectomy instead of a simple mastectomy?
“The fascia, which is taken out as a standard of care, forms a natural barrier to the pectoralis muscle. A cancerous penetration of the fascia can be easily seen if present and removed along with a small portion of the muscle adjacent to the penetration to create a clear margin.”
6) The MRI shows “portions of the mass laterally extend just deep to the skin surface.” Is a skin sparing mastectomy still appropriate?
“Yes. I don’t think yours has spread to the skin because you do not exhibit pulling of the skin or other deformities. If it did extend to the skin, we would judiciously remove affected areas as appropriate.”
7) Would you recommend a bilateral mastectomy?
“I don’t think there is cancer in the left breast. It looks clear in the MRI and mammograms. If you are very nervous about it or if the genetic testing came back positive, which is possible since you are young and have a family history of ovarian cancer, it would be an option. It would be possible to change the June 22nd surgery to a bilateral. The advantage to doing the other breast now as opposed to later would be that the TRAM reconstruction can only be done one time. But there are several other reconstruction options available for a later contralateral mastectomy and reconstruction. I do recommend that you follow up on the BRCA testing and try to get those results in before the surgery.”
8) You are unavailable for surgery on the 22nd so Dr. Bitar is scheduled to perform the mastectomy. How should I feel about that?
“Dr. Bitar specializes in Breast Surgery, which consists almost entirely of Breast Oncology. She is phenomenal. If I had to have surgery on my breast, I would have her do it.”
9) Should I consider Oncotype DX for my cancer?
“Oncotype DX is used when invasive cancer is present. We would revisit this after the pathology report comes back post-surgery.”
10) After surgery, how long until I can resume running? Swimming?
“You will have 2 lines of sutures plus 2 drains. You must wait until all of these are removed before immersing your body in water. Furthermore, the TRAM removes muscle (though usually none or next to none) and your plastic surgeon would have to advise you on the appropriate waiting time to allow the muscle to recover to avoid a hernia. This would probably be 4-6 weeks.”
Update: Since my surgery has been moved up to 6/13, Susan’s Bosom Buddy Walk will instead take place on Saturday June 11th.
Dust off your walking shoes and come join me and a few of my favorite people as we climb every mountain on our way to the Stanford Dish on Susan’s Bosom Buddy Walk. We will depart from my house at 6.15am on Saturday, June 11th. You can alternatively park and meet us at the Junipero Serra/Stanford Avenue access gate at around 6.45. Just look for the yodeling hikers; lederhosen optional.
Or, if the notion of a 6 mile and sometimes steep hike makes you weak in the knees, meet us back at my house around 8.30am for bagels and coffee (and anything else that you’d like to share, like crisp apple strudels or jam and bread).
Please leave a comment here to let me know if you’re planning on coming. And thanks in advance for venturing out so early in the morning to support me. Somewhere in my youth or childhood, I must have done something good to have such wonderful friends.
Update: Since my surgery has been moved up by 9 days, I’ll have to miss this event. Sorry!
Do geographic constraints prevent you from attending Susan’s Bosom Buddy Walk?
If you live in the Dallas area, we will be coming to you live on Saturday June 11, 2011 at the Susan G. Komen North Texas Race for the Cure in Plano, TX. Join Susan, Kelly, Rob, and hundreds more runners and walkers as we all come together to fight breast cancer. Here’s how you can take part.
Option 1: Register online or by mail to run or walk at the race or just come as a spectator and cheer us on. After the race, reconvene at a local restaurant (TBD) for brunch.
Option 2: Sleep in, skip the Race for the Cure, but meet us for brunch around 10am at a nearby restaurant.
Option 3: Donate to a good cause in my name. Your contribution will help other women like me via breast health education, screening, and treatment.
Top 10 reasons I should not have breast cancer:
10) I am at a normal weight. Obesity -> more fat tissue -> more estrogen -> higher likelihood of breast cancer.
9) I don’t drink alcohol, smoke tobacco, or ingest funny-smelling herbs. Women who drink 2-5 alcoholic units per day increase their breast cancer risk by 50% over women who don’t drink.
8) I exercise every day. Just 2.5 hours of brisk walking per week can reduce risk by 18%.
7) I breastfed 3 children for a cumulative total of almost 5 years. Nursing is associated with a slightly lower risk.
6) I eat plenty of fresh fruits and vegetables every day. A healthy diet helps to ward off obesity.
5) I am only 43. Eighty-five percent of breast cancer patients are diagnosed at or above the age of 50.
4) I maintain a low-fat vegetarian diet. Again, the point is to avoid obesity.
3) I haven’t had any unusual chest radiation exposure. Radiation treatment in a child’s or young adult’s developmental years leads to a much higher risk.
2) I had my first child at the age of 30. Some studies cut the low risk group off at 30 and some at 35, so this might be a neutral point.
1) I’m a nice person. Personally, I think this is justification enough, but I guess I’m not in charge here. And, anyway, I couldn’t think of a 10th point.
Obviously these reasons were insufficient in staving off an insidious genetic mutation deep within a single (or maybe a few) breast cell years ago. The troublemaker then propagated itself through millions of cell divisions to land me in the pickle I find myself today. Therefore, to balance out the above list, I now propose the
Top 3 reasons I have breast cancer anyway:
3) I have a family history. I have no grandparents, parents, siblings, or children with breast cancer. However, 5-10% of breast cancer cases are inherited, my mother is an ovarian cancer survivor (diagnosed at age 70, fairly late), and I have a first cousin who is a breast cancer survivor (notably, not a first-degree relative). Those data points together with my relative youth are weakly convincing arguments to suggest a potential hereditary genetic mutation.
2) I have dense breast tissue. The less fatty, denser, and more glandular a woman’s breast tissue is compared to that of other women the same age, the higher the risk of breast cancer. Rather inconveniently, moreover, the denser the breast tissue, the more difficult it is to spot worrisome abnormalities through imaging.
1) I‘m a female. Actually, men can get breast cancer, too (it’s just not nearly as common), so this merely reduces to: I’m a human being. Ok, that seals it; we’re all at risk.
My immensely supportive and very sharp friend Tania (who, by the way, surprised me the other day with a delivery of luscious Godiva chocolates … thanks, Tania!) recently asked me whether Dr. Kavanagh’s diagnosis estimates need to be updated with my MRI results. This table summarizes what Dr. Kavanagh told me at my initial appointment with her:
50% probability – pure DCIS (noninvasive, Stage 0)
40% probability – DCIS with microinvasions (invasive cancer) present (“DCIS-MI,” Stage 1)
10% probability – DCIS with tumor(s) > 1 mm involved (Invasive Ductal Carcinoma (“IDC,” Stage ???).
While MRI turns out to be fairly competent at finding DCIS, with approx. 90% sensitivity (or yields false negatives 10% of the time), it is fantastic at finding IDC and can detect it with close to 100% sensitivity (almost no false negatives). Compare that to mammography which has around 55% sensitivity for DCIS (false negatives for 45% of all cases!) and roughly 80% sensitivity for IDC. The downside to its high sensitivity is that MRI also presents many false positives (hence has low specificity), resulting in unnecessary biopsies, worry, etc. I, however, already know I have cancer and would like to discern wherever and in whichever forms it might possibly lurk.
Let’s revisit Dr. Kavanagh’s table and reassess the assigned probabilities. To start, we can lower the probability for “DCIS with tumor(s) > 1 mm” because my MRI didn’t find any tumors > 1mm. We can’t reduce the probability from 10% to 0% since MRI has <100% sensitivity, thus let’s call it 1%.
MRI can find lesions down to under 1mm, but does not have infinite resolution. So while it can detect my DCIS, it cannot easily distinguish between DCIS and DCIS-MI, as any microinvasions may measure well below the 1mm mark. Consequently, we would not want to alter the relative probabilities of “pure DCIS” and “DCIS-MI.” Proportionally splitting the 9% we’ve recovered from our new “DCIS with tumor(s) > 1 mm” probability leaves us with all new numbers in this updated table.
55% probability – pure DCIS (noninvasive, Stage 0)
44% probability – DCIS with microinvasions (invasive cancer) present (“DCIS-MI,” Stage 1)
1% probability – DCIS with tumor(s) > 1 mm involved, (Invasive Ductal Carcinoma (“IDC,” Stage ???).
I think this is correct, but feel free to let me know if my reasoning is specious. Tomorrow I will investigate the probability of cancer in my lymph nodes … exciting stuff!
Ultimately, the game changer in prognosis and therefore management of my breast cancer vis-à-vis chemotherapy and radiation is whether the cancer has already spread to my lymph nodes. Dr. Kavanagh said in her phone call with me (See It’s a Date post.) that my MRI changed the probability I have lymph node involvement to just 1%. Ever inquisitive, and also hoping I remember enough basic probability theory to execute, I wanted to know whether my diagnosis probability estimates bear that out.
If you look through enough medical studies on breast cancer, you can find the following data.
1) For patients with pure DCIS, the probability of a positive lymph node is 1-2% (Let’s say 1%. And, yes, I realize that by definition if the cancer has spread to the lymph nodes then it can no longer be called in situ — the IS part of DCIS.). We’ll call this P(L|DCIS) = 0.01.
2) For patients with DCIS-MI, the probability of a positive lymph node is 3-20% (One study says 7%. We’ll go with that.). Thus, P(L|DCIS-MI) = 0.07.
3) For patients with IDC and lesion <2 cm, the probability of a positive lymph node is 29% (Actually, 29% was the case for all invasive breast carcinoma <2cm, but we’ll just close our eyes here and say it can apply to IDC in particular.). Therefore, P(L|IDC<2cm) = 0.29. There is an overlap between DCIS-MI and IDC<2cm, namely that DCIS-MI is also known as IDC<1mm. To find the probability of positive lymph nodes given IDC and lesion between 1mm and 2cm, simply subtract.
P(L|1mm<IDC<2cm) = P(L|IDC<2cm) – P(L|IDC<1mm) = 0.29-0.07 = 0.22
The updated table from my Number Crunching post can be restated thusly:
P(DCIS) = 0.55; P(DCIS-MI) = 0.44; P(IDC>1mm) = 0.01.
Ideally, I would instead have P(1mm<IDC<2cm) instead of P(IDC>1mm), but we’re going to assume that P(IDC>2cm) is negligible and therefore
P(1mm<IDC<2cm) = P(IDC>1mm) – P(IDC>2cm) = P(IDC>1mm).
Recalling what I know about conditional probabilities:
The probability of my post-surgery pathology showing DCIS and cancer in my lymph nodes is now P(DCIS,L) = P(DCIS) * P(L|DCIS) = 0.55 * 0.01 = 0.0055.
Similarly, the probability of my post-surgery pathology reporting DCIS-MI and cancer in my lymph nodes is P(DCIS-MI,L) = P(DCIS-MI) * P(L|DCIS-MI) = 0.44 * 0.07 = 0.0308.
Lastly, the probability of my post-surgery pathology concluding IDC w/max. tumor between 1mm and 2cm and cancer in my lymph nodes is P(1mm<IDC<2cm,L) = P(1mm<IDC<2cm) * P(L|1mm<IDC<2cm) = 0.01 * 0.22 = 0.0022.
Add those three joint probabilities together to get my total probability of having lymph node involvement reported after surgery:
P(L) = P(DCIS,L) + P(DCIS-MI,L) + P(1mm<IDC<2cm,L) = 0.0055 + 0.0308 + 0.0022 = 0.0385, or 3.85%.
Compare this 3.85% to Dr. Kavanagh’s estimate for my lymph node involvement of 1%. Why the discrepancy? Here are some possible explanations.
1) I made too many erroneous assumptions.
2) Perhaps Dr. Kavanagh did not explicitly state but now assumes that I in fact have pure DCIS, in which case the probability of lymph node involvement is simply the 1% from medical literature.
3) Possibly the MRI results changed P(DCIS), P(DCIS-MI), and P(IDC>1mm) in ways I am inadequately capturing.
4) Or maybe Dr. Kavanagh’s wrong.
At any rate, props to you if you made it this far. And thanks for indulging my inordinate need to make sense of a heretofore unimaginable predicament.
Today I had my first appointment with Dr. Bitar, the breast surgeon who will actually be performing my mastectomy since Dr. Kavanagh is booked through the end of June. I had the option of doing a phone appointment or office meeting and chose the latter since as a general rule I prefer to meet in person anyone planning on slicing me open. As usual, I brought a long list of questions, which were mostly clarifications of answers that I had received from Dr. Kavanagh’s fairly optimistic talk with me last week.
We ended up having a lengthy discussion, around 1.5 hrs, and extended through her lunch hour and deep into the next patient’s time slot. She reviewed my MRI with me, scanning through the cross-sections showing my “large irregularly enhancing mass” (wording from my MRI report), pointing out the locations of the pectoralis muscle wall, lymph nodes, etc. In addition, she tempered my impression of MRI as a formidable diagnostic tool, connoting less confidence in it than does Dr. Kavanagh.
She is a considerably more conservative clinician in comparison to Dr. Kavanagh. Whereas Dr. Kavanagh was happy to place a favorable number on the likelihood for DCIS, DCIS-MI, and lymph node invasion, Dr. Bitar simply said that in my case she is very worried about invasive cancer, although DCIS is still a possibility. When I inquired about my mass “broadly contact[ing] the pectoralis major fascia,” she expressed concern at her being able to cut away a sufficient amount of tissue (muscle or other) in order to create a clear (cancer free) margin completely surrounding my cancer. If she is unable to create that clear margin, radiation would be required to eradicate any lingering cancer.
Because radiation can damage both skin and fat tissue via shrinkage or burning, its application can jeopardize a completed reconstruction. Hence, plastic surgeons will generally postpone reconstruction until all radiation therapy is complete. For me, that could mean a delay of around 6 months between mastectomy and reconstruction. Contrast this with my current game plan of mastectomy + immediate reconstruction, predicated on the assumption that I will not need radiation.
Dr. Bitar will be contacting Dr. Kavanagh, my radiation oncologist, and my plastic surgeon in the next day to discuss the ramifications of possible issues at the pectoralis boundary. Furthermore, she will be forwarding my MRI images to another radiologist in South San Francisco to obtain an additional opinion on the tumor’s extent and boundary.
I do have to say that I entered Dr. Bitar’s examination room optimistic but left a bit stunned and considerably more troubled. However, upon reflection (and after listening to my mother’s and Earl’s sage advice), I realize today’s development can only be a blessing. The whole point of this invasive, painful, life-altering exercise is to eliminate cancer from my body. If there is a good chance that reconstruction delay, radiation, and/or chemotherapy are required to achieve that end, I will do whatever is needed. I just have to get used to the idea first; it’s far better I do that now than after surgery when my options have been reduced.
Incidentally, there is now the possibility that if I delay reconstruction until later in the year, I will move my mastectomy surgery date earlier, perhaps on 6/17 or maybe even before then. I will be hearing from Dr. Bitar sometime Thurs. (6/2) after she has conferred with her colleagues and inspected her calendar for earlier mastectomy only surgery opportunities, should the medical consensus recommend altering our course. This would impact travel to Texas, Susan’s Bosom Buddy Walk, and my participation in the Race for the Cure. I will keep you all posted.
It usually takes a situation like this (along with mystery illnesses, playground fractures, and midnight vomit fests) to make Earl and me to wonder why we didn’t diversify. Yeah, engineering pays well and all that, but isn’t it possible some of our 13 collective years frittered away in graduate school could have been better spent becoming real doctors? You know, the kind that can write prescriptions, do no harm, save people’s lives. We have become competent do-it-yourselfers in many facets of our lives, and yet, realistically speaking, how could we ever learn enough to be able to set our own broken bones, treat our children’s many ailments, and cure my cancer?
Fortunately, where our myopia failed us, technology and others have filled in. For example, I can quickly supplement my meager understanding of genetics or radiology with a Google search. Need to figure out why our 4 year old can’t breathe easily and sleeps more than usual? Easy — bring him to the hospital. But in the hectic pattern of our work and school driven lives, there’s nothing like having expertise at our fingertips, a doctor in the house. Enter my friend Anna (pronounced “on-uh”). Physician by training, cellist extraordinaire by night, she has been a priceless repository of knowledge to draw upon when I’m confused by treatments, pathology reports, and discussions with my doctors.
Anna and I met years ago via a chance encounter involving a French seamstress, a library excursion, and a poodle left shivering in a street-side puddle. Since then, our relationship has blossomed into a celebration of common interests: music, children, walking, classic books, trashy books, swimming, celebrity gossip, food, Regency England.
My breast cancer survivor cousin recently remarked to me that, for good or for bad, cancer diagnosis can stratify relationships in surprising ways. Though cliché, you do find out who your real friends are. I tend to think this results more from people’s varying comfort levels in dealing with serious illness rather than a devious plan to sever ties when the gettin’s good. Ultimately, we all want to do right by our fellow human being if for no other reason than, someday, it might be us lying on the hospital gurney heading off to surgery.
As I could have easily predicted, Anna has never flinched, never wavered. From mammogram to diagnosis and every step of the way since, she has been an anchor when each new medical uncertainty nudges me further into a sea of apprehension. My newly self-styled BrFF (Breast Friend Forever), she doesn’t force opinions or cast judgment but rather offers advice when I ask, listens patiently when I need to vent, provides medical knowledge when I profess ignorance, awaits with compassion when I falter.
Yes, indeed, you do find out who your real friends are.