The Breast Consultants at Vanderbilt University confirm the previous findings in my pathology report. And Dr. Guru assures me that “he would not do a re-excision on his own wife.”  That does it for me. I cancel the appointment  with the second surgeon, the one set by my sister-in-law.

After all, the second surgeon has not been inside my boob. Dr Guru has.  And I find Dr. Guru’s statement that he would “not redo the surgery on his own wife”  more compelling than anything he could have told me. His wife was my anesthesiologist: attractive, funny, smart, a bit sassy. I believe that Dr. Guru has every reason to want her around.

For the first time in weeks, months really, I begin to relax. I don’t have to delay further treatments. I will have radiation for sure, but I can deal with that. No worries.

I still feel tremendously weary and anxious at the mere thought of chemo therapy though.  But Dr. Guru rolls that stone off  my heart with a few words: “Not much benefit for someone like you,”  he says, and shares with me a chart that shows only a one percent benefit of chemo therapy in my case.

-Why did you not say so right away? I ask him. You know I have been petrified.

-Well, I wanted it to be your decision, he says. Some women will opt for chemo even for a one percent benefit.

In a jiffy, life looks simple and uncomplicated.  No speed bumps ahead.  No re-excision. No chemo therapy. Now that I have dodged that scary chemo bullet, I promise myself to be a good person. I will be more patient, kinder, less judgmental. From this day on forward, I will be a new me to show the whole world my gratitude. Always.

I have an appointment, arranged by my sister-in-law, with Dr. Weary a much respected oncologist whose specialty, it seems, is to keep cancer patients alive long after others would have tossed in the towel. The day after, I have an appointment with another oncologist, at the Medical School, arranged by Dr. Guru’s office. I might as well hear two opinions, have two physicians confirm in unison that all is A-OK.

I am on cloud nine.

Although no cancer cells may have been found in a patient’s lymph nodes during surgery, 20 percent of these “node negative” patients still have cancer cells somewhere outside the breast area. Not surprising perhaps, since once a tumor reaches  1 cm, you have one billion cancer cells, like this one below, in your body.

In the past, oncologists have tended to administer chemo therapy to all patients, not knowing which ones were among those 80 percent not at great risk.  They  know that once your breast cancer spreads to other organs, you become Humpty Dumpty. They cannot put you back together again.  At best, they can  keep you stable.

But now one company, the only one in the world, California based Genomic Health has a way to test cancer tumors to predict distant recurrence. Based on the examination of 21 different genes in a tumor, they come up with a “recurrence score.’  The scale goes from 1, lowest, to 100 ( highest probability that your cancer will spread in the next ten years.)

While I anxiously wait for my OncoDX test results, I pour over probabilities and statistics for my cohort. Given the size of my tumor, 1.5 cm, the mitotic activity report, the nuclear grade, etc, I am guessing my score will not be the lowest. Nineteen maybe?  Twenty? OncoDX score 30 or higher: you should have chemo. OncoDx scores under 18, no chemo.  If I have a score of 19 or 20 ,  would it be “safe” enough to skip it? I  keep telling myself it would be.

My score was 23.  Right smack in the  middle of  the intermediate danger zone. Borderline for chemo.

“Right in the middle of the gray area, “ Dr. Guru tells me on the phone. “Do you want me to fax it?” Well, yes,  but my office is big and faxes have a tendency to go astray. He promises that Joy will fax it right away. I worry as I stroll over to the fax room.

Am I  an idiot for trusting that he will do it “right away?” Maybe his “right away” is the same day, not within five minutes. I do not want anyone else to see my OncoDX  fax.  But as soon as I enter the room, the OncoDx test result rolls out of the fax machine. I make a regular copy and leave, clutching it to my chest. Back at my desk I study the $3800.00 piece of paper more carefully than I would a sales contract for a $500,000.00  IBM server.

I note that Dr. Guru’s office   received the score already two days earlier. Do they not have any idea of the anxiety level of a patient who is trying to figure out if she needs chemo?

My recurrence score of 23 means that in the next 10 years I have a 14 % risk of  metastatic cancer, of becoming Stage IV. I read the words “distant recurrence” over and over. I taste lead in my mouth. The taste of fear.

Does this mean chemo? I feel lightheaded. When will it start? How long will it take? Which toxins will they use?

At home, I pour over chemo books and surf the web to try to figure it out. It looks like my stage will require four rounds. I start to feel resigned to the reality of nausea, aches and vomit; to loosing my hair, my mind, my ability to have an orgasm –yes, that is a possible side effect, possibly even permanent– and to gaining  30 pounds without the pleasure of eating more.

But then I read in Dr. Susan Love’s book:  chemo reduces recurrence to one third, i.e only five percent in my case.  And, most importantly, she states “chemo less effective in post-menopausal women.”

If it is less effective, it must mean there is not much help, not even chemo, for post-menopausal women whose cells have spread. Should I been happy or have a heart attack?.

Three weeks after after my lumpectomy, and after some prodding and probing,  my pathology report arrives in the mail. I polish my bifocals. — the better to see you my dear –  and sink down in my favorite reading chair.

On page one, I immediately zero in on these worrisome phrases:

“All other surgical resection edges free of carcinoma”, “cribriform pattern with associated comedo type necrosis”, and “perineural invasion is identified” (slide 3H.)

Cells with cribriform pattern are considered less aggressive. Comedo type cells, on the other hand, are nasty little fellows. They are associated with the most aggressive form of cancers. Comedo-type necrosis, along with  tumor size, nuclear grade, and margin width are all important predictors of the probability of  recurrence.

Necrosis is Greek for death. Comedo type necrosis happens when the cells proliferate so fast they kind of choke on themselves and die. But other type of cells like cribriform, papillary and solid may  also suffer necrosis to a varying degree.

I realize I need to ask Dr. Guru what “my necrosis” means. Guessing is both a scary and an inaccurate activity.  I am a bit annoyed that he did not ask me to make an appointment and offer to explain everything.

Perineural invasion means that cancer cells and nerves are entangled. Do nerves provide the path of least resistance when cancer cells escape the breast, like veins and lymph nodes? I need to defer to Dr. Guru on this one as well.

Before I can compose an e-mail with questions for him, my mind is set on fire by the following:

-tumor less than 1 .0 mm from lateral resection edge

-all other surgical resection edges are free of carcinoma.

Now I am not an English major. English is, in fact, my second language. But “all other edges free of carcinoma” sounds to me as if ONE edge is NOT free of cancer.  Or do I need to take my TOEFL test again?

What happened to my “wide” margins?

“Yesterday was horrific, “ says  Dr. Guru’s assistant when I call to complain that he never called with the pathology results, as promised. “I had to snatch him to even get one second.” She lets out a deep sigh, the kind that seems to come from  the bone marrow, not from the lungs.

I feel guilty for nagging her about my pathology results. I have no problem understanding the plethora of emergencies Dr. Guru must face each and every day.

“And he is going on vacation, you know,” his assistant tells me.

I imagine the scene: Phones ringing. Faxes rattling. Lights flashing. Intercoms blaring: Dr. Guru, Dr. Guru. Line 2. Dr. Guru, Dr. Guru, OR 5. Patients, like me, but a lot sicker, clamoring for his attention. Patients with melanoma cell spreading like wild fires, begging him to intervene.

And here am I, on the opposite end of the spectrum: BC stage 1 . I am  the patient who is never an emergency. Of course, he didn’t call. With only 24 hours in each day, Dr. Guru is forced to set priorities.

And now he is going on a much needed vacation.  How long will  he be gone? Two weeks? Three?   I picture some luxury junket paid for by the scalpel manufacturer.  No, not at all. It turns out he will be gone one week, working in a summer camp for kids with disabilities.

I am ashamed, feel selfish and petty, but I must find out what was in the tumor and what will happen next.

“When will I start treatments? When he comes back?”

“You need the oncogene test first,” Joy tells me.

My blood drains: he wants my oncogene tested?  Is it not the oncogene result I was supposed to get yesterday, the day before, really? Is that not the test result I have been chasing?

Did Dr. Guru not tell me: I am just waiting for the oncogene report? But how could he be waiting for that report if I did not even have the test?

Good grief, why don’t I understand anything?

Friday. No news on the oncogene.  No news from Dr. Guru’s office all day Monday. Finally, I call his assistant just before closing time.

“We are waiting for your pathology report,”  she says. “Have you been to post op yet?”

“Yes, I had my ten second post-op  a week ago.”

It seems like his office should know that. Don’t they have a computer? Don’t they track their current patients? No Outlook Calendar?

“Ten seconds? Sounds normal,” she laughs. She sounds tired. Reluctantly, she puts me on hold to check for my pathology report and finds it in the in-basket.

I want Joy to read the report to me, at least the most pertinent parts, the ones about which I am on pins and needles: The oncogene and the nuclear grade parts.

“No, you will not understand it.”

Then, perhaps sensing that I am about to scream, she quickly changes her response to: “I don’t understand it.”

Of course. Does she think I was born yesterday? Is my age not on the chart? I force her to give me the high lights. She stumbles ahead: ER+, PR + (meaning that my tumor is sensitive to estrogen and progesterone. This is good news. They will respond to hormone treatments.) Lymph nodes negative. This is significant, but I already know that detail.

Dr. Guru’s assistant is clearly struggling. It is as if she is trying to interpret someone’s bad handwriting, not a computer printout.  I have “deja vu all over again.” But Joy is nicer than Dr. Morte. And she is not a doctor. Just an overworked, and probably underpaid, assistant. Out of mercy I free her from her misery.

“Please just email it to me.”

“We don’t have a scanner.”

One of the finest research institutions in the country, well in the Southeast, has no scanner?

“I can fax it to you. What’s is your fax number?”

I don’t want my pathology report to sit around our office mega fax machine for everyone to read. What if someone sees the word breast cancer and decides to swiftly transfer my job to someone with more potential?

“I will put your pathology report on his desk,” promises Dr. Guru’s assistant. “I will put it right on top so he notices it right away when he walks in tomorrow morning.”

“He will call you,”  she says. “He will call you tomorrow and explain everything.”

In the morning, as soon as Dr. Guru’s office opens,  I call to nail down my surgery date.

“We can not plan anything until we have your MRI results,” his assistant sounds tired. “We don’t know what we’re dealing with yet. Yes, you can have a lumpectomy next Tuesday.  Anything more involved, requiring more time, will have to wait until the week after that, possibly until  the end of the month.”

End of the month? I don’t understand why she cannot “book” a couple of dates and then cancel one or the other. That is how you book hotel rooms and air line tickets when you are unsure of date and time, certain of the destination.

“What about all the doctors that need that slot? And what about all the doctors and staff members who need to co-ordinate everything?”

I did not think of those minor details. My line of thinking is more along the lines of me, me, me and now, now, now.

Joy tells me the result of the MRI and the left breast biopsy will be available  within a few days.

“So that is when we can set a firm date?” I ask, full of hope.

“No that is when he needs to meet with you to discuss your options.”

Options?

Since my diagnosis, I have come full circle. I have infiltrating ductal carcinoma in my right breast, and who knows what else might lurk in my left breast.

A month ago, I was declared  a “good candidate” for a lumpectomy. Now, 30 days later, I am being told by Dr. Guru’s office that we’re still considering “options.” I may have lymph node involvement. The MRI may reveal cancer not found on the mammogram or the ultra-sound. I may not just breeze through a lumpectomy, after all. I may face a full mastectomy.

It slowly sinks in: a candidate is not the same as a graduate. A candidate is not the equivalent of a hire or employee, a candidate is the equivalent of an interviewee. It is someone who has high hopes, wishing for the best.

You don’t understand your doctor’s mumbo-jumbo, or have doubts?  You are confused about the correctness of your diagnosis or your pathology report? You are too scared to wait six months to find out what may lurk inside your boob?  You have a family member, or a friend, with breast cancer and you want to figure out what it all means?  Go to:

http://www.hopkinsbreastcenter.org/services/ask_expert/

You can send them an email with your questions and wait for an answer. But chances are that  by reading other people’s questions you may have the answer to your own.

This site is so important that I urge everyone to save it in “favorites.”

When the big C strikes, everything is suddenly confusing and incomprehensible. You will never even remember this link to Johns Hopkins’, if you don’t save it NOW.

I hope you never have an occasion to use it. Unfortunately, though, chances are high you will. One in eight will get breast cancer. Some say the in-official number is now one in six.

The World Health Organization, WHO, estimates that every year,  1.2 millions new cases of breast cancer occur globally. About 200,000 are in the United States, which would indicate that American women have the highest rate of breast cancer in the entire world.

The Johns Hopkins’ life line is free. How amazing is that?

Thank you Lillie Shockney for devoting yourself to helping others. Thank you, Johns Hopkins, for keeping this valuable resource going!

Thanks to you I fought – and won- a re-excision. Had it not been for you, and one radiation oncologist with eagle eyes, I would probably have thought that less than a two mm margin was OK. (It is NOT.)

Ask the Expert is no substitute for medical advice from a physician who has examined you and your records. But you can learn from the questions and the answers if your instincts are worth pursuing. Let WDDD be your mantra: When in doubt don’t delay.

The breast cancer debate circles a great deal around “unnecessary” mammograms and biopsies. You may be “frightened” for “no reason.” Puh-leeeeze!

What is scarier? A biopsy where you find out everything is fine? Or the biopsy you didn’t have that brings you straight to Stage III or IV down the road…What is more alarming: a false positive or a false negative?

I, for one, will take the false positive and do jubilant cart wheels all the way home to uncork the champagne on the news “it” turned out to be “nothing.”

Finally, I meet with Dr. Guru, my surgeon oncologist, after a two week wait. It seems like ten light years.

The waiting room is enormous, empty except for an elderly couple. I notice that they do not carry an over-sized,  brown x-ray envelope, like I do. The staff in the reception  is slow and overweight, not surly but not particularly kind or nice either. They treat me no better, but no worse, than the staff in the post office.

The waiting room is filled with rows of empty chairs with wooden arm-rests. A revival meeting could easily be held here. Are all these seats ever completely filled with cancer struck patients? This is a new world for me and it seems amazingly pedestrian and unremarkable, despite the foreboding sign above the entrance door: Surgical Oncology.

Dr. Guru looks exactly like his web photo – an open, friendly face. He is of normal built, fit without being too gaunt or too muscular. He exudes competence and energy, a no nonsense man.

“I assume you have read up on this,” he says, talking to me, not my husband, although he includes him with a  brief glance.  Dr. Guru’s manner is factual, and he gives me his assessment without sugar coating, he pauses for any questions I may have.  I don’t  have the slightest feeling that Dr. Guru is trying to shoot me with one silver bullet at a time when he lays it on the line: “Clinical Stage I” then quickly adds: “for now.”

“We may find more on the MRI and that could change your picture. We may find cells in the lymph nodes. ” He explains the blue dye he will squirt into me and why.

Unbeknownst to me, I have lymph nodes, like pearls on strings, around my breasts. I certainly don’t remember a word of this from my tenth grade biology class.  (I do remember the 6th grade class about “flowers and bees” and how our teacher managed to transform this fascinating subject  into a jumbo sleeping pill.)

Some of the lymph nodes go from my breast up to the collar bone and neck, supraclavicular lymph nodes. Others go from my breasts to my arm pits, axillary lymph nodes. They are all part of the lymphatic system, and their purpose is to catch debris.  When cancer cells spread from the breast, they take the path of least resistance, and travel along the lymph node system (sometimes also along the vascular system.) At surgery, Dr. Guru’s plan is now to squirt a special blue dye into my breast to see how far the fluid travels. He will then take the lymph nodes with blue dye and dissect them to check for cancer cells. It is called a sentinel node biopsy.  It saves the surgeon from having to remove lymph nodes from your axilla willy nilly since they are so important for the body’s ability to halt infections.

“You won’t die from this,” Dr. Guru finally says. “But we have to get you through it.”

Or did he say: “You are not likely to die from this?”

As we wait for the elevator, I can not remember if Dr. Guru used the word “likely” or the more assertive “won’t die from this.”  My husband cannot remember either. Marie is right. There is so much to keep track of, so many important nuances. I want to write everything down in my blue  journal as soon as I get home, while everything is still fresh in my mind. But here I am walking to my car, already confused, uncertain about Dr. Guru’s exact phrase.

I am reading in the garden, pool side, when I notice the gathering clouds and hear the rumble in the distance, so I dart inside the house to lie down on the living room sofa. My husband is already napping upstairs.

Claps of thunder before rain begins to drum against the tall windows as I drift off to sleep, a rare occurrence. I seldom take naps. When I slowly come to, the clouds have dispersed and the sun has moved from my field of view. It is pre-dusk on a clear summer evening. Suspended between sleep and  consciousness, I hear the children in the neighborhood across  the pond laugh and shriek. Then their shrieks get shriller,  the kind of shrieks that come not from joy but from fear or conflict. Quickly, their squeals  turn back to merriment and laughter.

I try to orient myself in space and time, drifting between the here and now, and previous places and decades. I am back in my own childhood, resting in bed, perhaps with a mild fever. The neighborhood children play kick the can, race across the lawns, hide behind the sloan hedges and among lilac bushes. These sounds from five decades ago  mingle in my mind, not only with the present shrieks, but with shrieks and laughter from my own children, two decades earlier, in a state 1500 miles from here. The same joyful shrieks, the same quick swings between  fear and  laughter.  As I rest on my sofa, the scent of those lilacs from far away and long ago is so intense that  I half expect my mother to enter the room with a glass of lemonade or a comic book, or my three children to come crashing through the back door.

I get up from the sofa to retire up stairs. I continue re-reading Joan Didion’s The Year of Magical Thinking. (I read it already in January, months before I knew, now I have the strong urge to re-visit her experience.)

“Life changes fast” she writes. Life changes in an instant. You sit down to dinner and life as you know it ends. The question of self-pity.”

Only, I don’t feel self-pity, I just feel amazed. I am amazed that this happens to a person, who on the maternal side, descends from a long line of women with dour expressions and whose gloomy longevity allowed them to reach  87, 92, 97, 99 years of age.  Could it be my newly discovered paternal grandmother , Carolina Jansdotter, dead at 39 , who is the culprit, the poison in my gene pool?

Or did the environment throw a wrench into my DNA machinery? After all, what does it matter if your food is cooked from scratch if there are hormones and antibiotics in the meats, mercury and PCB in the fish, pesticides on the vegetables, estrogen in your water, genetic manipulation of grain and fruits, chemicals in your cosmetics and lotions, detergent and soaps. Formaldehyde fumes  in your floors, ceilings and walls.

According to cancer.org you get cancer one of three ways:  inherited,  environmental damage to DNA,  or a combination of both. So, no self-pity -  yet. Just amazement and anxiety, and a great deal of curiosity: how did I get it? Want went wrong inside my breast? The more I learned about the cancer, the more I realize that this disease is highly unpredictable. A Stage I can accelerate without warning and against all odds.   A Stage III can be beaten back , also against all odds. Cancer is still deadly, not much progress has been made towards finding a cure. And it is clear that  a lot of unpleasantness and expense is involved in trying to beat it back.

Three days have passed since my diagnosis. When office work slows down, I feel panicky and restless. I debate whether to leave the office, but instead I turn to Google and type in “ductal invasive carcinoma” and “undifferentiated cells.”

It turns out to be extremely bad news.

Undifferentiated cells are abnormal looking cells that have changed from their origin and spread into the general cell population.  They tend to be the most aggressive of cancer cells and carry a “poor prognosis” meaning they are hard to stop from proliferating.

I am wired and my hands shake as I turn off my computer. Without changing voice mail, or forwarding my calls, I leave the office. I don’t wish anyone a good week-end. As far as I am concerned, my week-ends are ruined for all eternity. Despite the summer heat, I am chilled to the bone and I actually shiver as I walk along the broiling cement path towards the parking garage.

My husband looks up from his laptop, a bit surprised by my early arrival,  then he notices my ghostly expression and immediately stands up and puts his arms around me. In tears, I tell him about the undifferentiated cells, about how scared I am. He holds me, feels so solid and calm that I relax.

“We’ll get through this,” he says. “You will be OK. Why don’t you call the radiologist at the Breast “Care” Center to find out the exactly what is in your pathology report.”

My finger trembles as I dial the number. I am scared, angry and confused. Do I have a good prognosis or not? Or was the talk of good prognosis and slow growth just standard bullshit to minimize the bad news so Dr. Dork could get off the phone without having to deal with a hysterical patient?

“She is working in a different location today. A nurse will call you back.”

Within minutes, a physician calls. He calmly reads: infiltrating ductal carcinoma. He annunciates the key words: “moderately differentiated cells” He repeats Dr. Dork’s mantra: A good prognosis.

Moderately is good news, a lot better than poorly differentiated, and incredibly much better than undifferentiated. Of course, well differentiated would have been better. But my pulse slows down and my hands feel less clammy at the thought of those cells inside my boob being moderate.

But I am still shell shocked and I feel exactly as I once did when I, by seconds, avoided a head on collision at high speed.

I never ask him to send me a copy of the pathology report. How stupid is that? And why did he not offer?