Dr. Guru calls me at work with the pathology report.  “I just got it,” he stresses.

(So he did read my  blistering email after my first surgery. Then I complained about him not sharing the pathology results until two weeks after he himself received them.)

“Everything completely clear, just as we knew it would be. Margin a bit larger than 2 mm.”

“Good job then, “I say.

Dr. Guru asks if I have decided to fore go chemo and when I say yes, he tells me it would have been of  little or no benefit in my case.

“Why add all those toxins to your body?” .

“Why did you not say so right away? I ask. “You knew I was terrified.”

“I wanted you to make up your own mind,” he says. “Some people will agree to chemo for a one percent better chance of survival.”

This is nonsense. How can a patient, a lay person,  “make up her own mind?” Even someone like me, someone who has cruised the interned “ad nauseam” cannot really decide. A lay person will often misread statistics and project wishful thinking into her readings. This is natural. This is why a doctor will see another doctor when she is sick. A lawyer will not represent himself. You need a professional, someone with experience and perspective.  Preferably a professional with no skin in the game.

But I say nothing

Dr. Guru tells me I may start radiation “any time.” “Your choice of hospital is fine,” he assures me. “Alpha is excellent. Many of my patients go to him.”

(Suddenly, he no longer refers to Dr. Alpha as “that radiation oncologist.”

Dr. Guru sounds upbeat. And I am amused. Now that the icy patches between us have been salted and sanded, everything is on the up and up.

That night, I go to bed relaxed and content.  For the first time since I received my breast cancer diagnosis,  I do not wake up in the middle of the night. Not even briefly.

The sign “Magnolia Cancer Center” does not look as surreal as it has during my previous visits. After all, I do have breast cancer and this center is for me. Although I do not yet have the hollow eyes, the waxy complexion, the bloated body, or the shuffling gate of so many of the other cancer patients I see here. I suppose it is because I have yet to start my treatments.

A large black woman with a gap between her teeth greets me. Her look is that of kindness and concern, but not pity. I must have “new patient” written all over me. Eventually, I ,too, will be ground down by all the chemicals and look like the others: a shadow of former self.

The oncology department’s reception is as spacious as a hotel lobby, and lit by large windows. Someone has obviously dumped a serious amount of capital into this interior. (Although not enough money to allow the purchase of scanners to allow the doctors to email reports to patients.) Yet, the setting is remarkably different from Dr. Weary’s crowded, and a bit shabby, office.

The first person to check me is not Professor Oncology. It is a short, slightly round faced man in a white coat. I assume he is a student at first. Then I notice his  name tag.  He is already a doctor,  a  fellow in oncology, he explains. He seems kind, serious, and gentle. He weighs me in fully dressed and I wish I had kicked off my shoes to reduce my chart by a pound.

Professor Oncology looks Indian and seems too young to be a full Professor and Cancer specialist . Had I met her in a hospital corridor I would have taken her, too,  for a  medical student. Her black straight hair hangs down below her shoulders as does her drab navy skirt which goes inches below her knees and her white coat.  Her face is completely devoid of makeup. Her hands have a pianist’s sinewy, long fingers. Carefully, she feels about my neck, looking for signs of swollen nodes. She feels my breasts, and my armpits. She asks for permission for Dr. Fellow to examine me also.

Dr. Fellow stops with both hands around my neck and looks over at the Professor. He must think that he found something. I tense up, but she shakes her head. I immediately relax as does he.

The professor does not print out an adjuvant online graph like both Dr. Guru and Dr. Weary did. Instead, she  scribbles a few things on the back of a piece of paper. She tells me what I already know: stage 1, node negative, ER/PR + strongly so, HER/2 neg. grade 1 tumor. Like Dr. Weary, she is a bit baffled by my relatively high oncodx score.  It is 23. But she is still convinced that chemo would only improve my odds by 2%.  The professor, more than any of the others, stress the toxicity of chemo therapy: Leukemia, heart problems, bone marrow loss, risk for other infections.

Unlike, Dr. Weary, she does not agonize even a bit about skipping chemo. To my immense relief, she seems to have no doubts. She does not wring her hands, does not stand up only to abruptly sit down.

She draws up a five-year plan for hormone therapy: five years on Tamoxifen.  Or, she suggest,  we can do 21/2 years  and then switch to Arimidex, an aromatase inhibitor. I look aghast. “Oh well, Tamoxifen then,”  she shrugs. She does not ask what I have against Arimidex. She gives me an appointment for two months later when radiation will, supposedly, be over. She does not explain why I can not be on hormone blockers while on radiation. She does not bring up insufficient margins. I do not tell her about Dr. Alpha other than to mention that I will have radiation at a hospital closer to home.

Dr. Alpha, my new radiation oncologist, flips back and forth  in my pathology report. He seems annoyed. Not with me, but with the report. He pushes the reading glasses back on top of his head. “I don’t understand this,” he says. His tone bristles, but he looks kindly at me as he stabs his finger at at the bone of contention, my pathology report and the words “all other margins free of carcinoma.”

I am a bit embarrassed because in the margin I have scribbled: WTF.

“Oh no!” I hurry to explain everything, not  to defend Dr. Guru but  to sooth Dr. Alpha. I don’t want him to get more agitated and annoyed with Dr. Guru. I fish the Vanderbilt report out of my purse and show him  exhibit number one: Vanderbilt confirmed the first pathology report from my lumpectomy.

“Dr. Guru explained everything in his emails.” I tell Dr. Alpha. “I can send you copies. ”

Dr. Alpha does not seem convinced.

“Well, something is wrong.”

He starts to explain why my pathology report  is wrong, then abruptly stops himself.  He realizes that I can not process the meaning of his words so he draws a picture. “Here is the lateral margin,” he begins and goes on to explained how there has to be one. Then he goes back to the report, flips back and forth before he, frustrated, tosses the pages back on the table. Obviously, the answer he wants is not there.

“Either your pathology report is wrong or your surgeon is wrong,” he says firmly. Although he seems irritated with the report, a bit angry even, Dr. Alpha manages not to be the least bit unpleasant. “This is not right and I can not treat you like this. I read these reports all day long.  All day long. That is what I do for a living and I have seen everything.”

I am tempted to ask him about “everything,” but I guess that it would take an eternity and be way over my head anyway. Darn I wish I had paid more attention to science and not blown it off as “nerdy.”

“Forget Vanderbilt! They just confirm tissue cells. They don’t confirm margins,” he says and hands back the Vanderbilt result.

“Either the pathologist marked the slides wrong or the surgeon is wrong and has to redo it and give you a re-excision.” says Dr. Alpha.

“But that will take for ever? He is busy.”

“Not at all. He owes you. He will just have to get up a bit earlier in the morning. I am here till seven or eight at night. My colleague, Dr. E’s car never leaves here before 7.30 PM either.”

I mildly defend Dr. Guru. “I am sure he works that late too. In fact, some of his emails are sent late at night.”

“I will put in a call to him right now.”

“Good luck!”

“Let’s start with your pathologist then. Do you have her number?”

I scroll through my Blackberry while Dr. Alpha in a typical Type A fashion watches over my shoulder. “No, not that number, that’s not it. Oh, so you don’t have it,” he says while I am still scrolling. “Well, I will take care of it and I will call you by Friday. This will be cleared up by then, one way or the other. Either you have to have another surgery next week or we can start your radiation.”

I leave Dr. Weary to meander through the bowels of the hospital until I end up in its basement.  “Radiation” reads one arrow pointing down yet another hallway.  Around that corner another door:  “Environmental Services.”

Toxic waste? Then I realize it is only a euphemism for the janitor’s office. Around the next corner from the janitor’s closet a sign reads: “Radiation Oncology.”

The ceiling is low, the tiny waiting room has a few wooden arm chairs, all empty, and a floor to ceiling aquarium with what looks to be salt water fish. The receptionist is heavy set, slow, none too friendly. She waddles off to make a copy of my pathology report before she sends me next door.

Inside the door, a figure, slightly bent forward, comes steaming towards me in the dark hallway,  walking with a bit of a limp. Hip injury? Knee? Still, Dr. Alpha looks fit and tall, dressed in a short sleeved silk shirt, well fitting slacks and a cool belt. Hugo Boss?

At first glance, I expect him to be “a man’s man” and a bit full of himself, someone who talks “at” women, or above their heads.

Wrong.

Dr. Alpha pulls up a chair, right next to mine, by the large conference table. He  is informal and attentive,  seems sincere as he immediately engages me. He asks how I discovered my cancer. We chat about my oncodx test result? What about my visit with Dr. Weary? Like Dr. Guru and Dr. Weary, Dr. Alpha carefully probes my neck. I dare barely breath as his large hands searches for a swelling or a node perhaps missed by the others.  But without as much as a glance at me, he sits back down and again checks the “shared decision chart” that I just received from the oncologist.

“I don’t want chemo,” I tell Dr. Alpha.

“There is this study from your neck of the woods,” he says. “It shows chemo at your stage to be of very little benefit.”

“From the Karolinska Institute?”

He nods.

Like with Dr.Weary, I have no sense that Dr. Alpha’s “patient time management clock” is ticking, even though I have been dropped into his schedule without much warning.

“Do you happen to have your pathology report with you?” he asks.

Although his receptionist just copied it for him, I fish out my own copy from my purse which by now is an ambulatory file cabinet. Dr. Alpha adjusts his reading glasses. In one nano-second, he is hung up on the “less than 1 mm margin all other sides free of carcinoma” issue,  the one issue that bothered me for weeks, the one issue  I just had given up on.

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?

No Pathology report .  It seems that I am off Dr. Guru’s radar screen.

Who cares? Not me! I am upbeat and sure of myself, thanks to the book “What Your Doctor Didn’t Tell You About Breast Cancer.”  I have been devouring it the past couple of days while waiting for the pathology results.

Tamoxifen — pouf — out the window  for sure.  I, for one, do not plan to  poison my body just to enrich Astra Zeneca’s corporate pockets. Now I question even the wisdom of radiation. Is that really going to be necessary?

I feel better than ever. Better even than before the  Breast “Care” Center called to tell me that they “regretted that the biopsy results were not what they had hoped.”

I grouse, around family and friends, that the service level at the University Medical Clinic is worse than  at a two star hotel. My insouciance is totally based on the assumption that no news is good news.

Instead of margins and oncogenes, I focus  on  a trip that my husband and I will take to visit old friends. The question is when? I am on the phone with our friends to figure this out.

“But what about your radiation schedule,” asks my friend M. “When can you get away?”

“Radiation,” I scoff. “Not even scheduled yet. Terrible service. No communication what so ever.” I am all bravado on the phone, but my friend M, a cancer researcher and biologist, is not amused.

“You have to take your care into your own hands,” he says. “Nobody else will do it for you.”

His words stick.

Of course. Who could care more about me than me?

Right then and there, I decide to step up my level of “care.” But how? Not only don’t I have the pathology report from my July 14^th lumpectomy.  ( I do  not  even have the first pathology report from the Breast “Care” Center .)

It is as if my pathology report has nothing to do with me. Everyone can read it, but me.

I have no idea if I have the oncogene. I have no idea what my margins are. I have no idea if I need chemo, after all. Or when it would start. I do not even have an oncologist!  How  can I take charge of my care when I don’t even know what my breast cancer care is supposed to be?

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.”

Dr. Guru calls at 9 AM. Less brusque than during post-op a few days ago. (Less stressed out, I suppose.)

“No cells in the margins.”

What are the margins? He does not say and I do not think to ask.

(Before the tumor is removed, the surgeon inks a line around it. A clean margin means that no cancer cells are found in tissue samples within 2 mm on the inside of the ink line.)

I hang my hat on the report he gave my family in the waiting room after surgery. Wide clear margins. Pressed by me, nobody seems to remember his exact words. But certainly “wide” must mean more than 2 mm even in obscure medical lingo.

“No lymph node involvement, ” Dr. Guru says.

What a relief! I am ready to click my heels and do a victory lap around the office with him still on the phone. After all, his words: “one single cell in your lymph node means chemo,” have raked havoc with my mind ever since. The truth is that I have been dreading chemo more than hospice. Now it looks like I am safe.

“At this time, we’re only waiting for the report on the oncogene,”Dr. Guru tells me.

“You mean Her-/2?”

He does not answer.

If he does not refer to the HER-2/neu, does he mean that I need to be tested for the BRC1 or BRC2 inherited cancer gene? I am confused.

“Am I likely to have it?” I ask, still not sure what he means by “oncogene.”

“Not likely, given how slow the cancer is. I will call you back Friday.”

He hangs up.