My friend Elise, who had breast cancer more than 30 years ago, sends me an email. Back when she had her first breast cancer bout, she was a law student with two young children. She had a mastectomy. No implants. No chemo therapy. No radiation. Now she has discovered something in the breast she has left.

Right away I pick up the phone to call her.

“ I went over to the Magnolia Cancer Center to get a diagnostic mammogram and to see Dr. Guru,” she says.  “He is not overly concerned but wants me to have a biopsy. Told me it would be the medically prudent thing to do.”

She pauses. I am looking for the right words because I can tell she is more worried than she lets on.

“I must admit I am a bit rattled,” says Elise. “Although Guru seems to think it is highly unlikely this is cancer.”

“So did he look you straight in the eye when he told you it is nothing,” I ask Elise. “Or did he avoid eye contact, shuffle the papers or glance at the cell phone as he spoke? Did he say it was “nothing ” or “probably nothing?”

Elise and I speculate over the phone, like two high school girl friends speculating about some boy. Did he really say he likes me? Do you think he will call? Except Elise and I are now two middle-aged women, not two loved-crazed teenagers. And our speculations are not about a boy one of us fancies. It is about the surgeon oncologist we both share. And we are not trying to read tea leaves about love, but about biopsy results before they are in.

We analyze Dr. Guru’s every gesture as he talked to Elise. Every nuance of his demeanor, of his tone of voice, of the words and how he weighed them. Finally, I conclude: Well, Elise, if that is what guru said and if that is the way he said it, then it is from God’s mouth to your ear. Of course you will be OK. He would never say it that way if he wasn’t sure, I tell her.

Elise sounds relieved. I am relived too. I believe what I just told her. But then again – even if I didn’t – I would have told her that  she would be all right. Just as I would have assured her if she had asked: Do you think he will call? Like any   real friend, I would have said: Of course, he will call you. And then if the call never came: “He didn’t call you? How strange. Maybe he lost your number? Maybe he dialed the wrong number, could he have read your 4 as a 9? You write your fours like nines some time. Maybe he is too shy?”

What is even more typical in my friend Elise’s situation, she would speculate with a friend rather than turn to an expert. Her husband is a doctor, he works with guru, and they are practically neighbors. The most logical step, perhaps, would have been to ask her husband to ask Guru if he really thought it was “nothing” or if he was more concerned than he let on. But no, Elise mulls all these scary details over with someone, me, who is probably the least qualified in the world, medically speaking, to give advice. But I will say what she wants to hear.

“As part of a regular ongoing effort to provide quality patient care,” reads the letter from the Breast “Care” Center. “We encourage annual follow up care.” It then goes on to say that they would greatly appreciate receiving information concerning my health status since last treated there.

Really?

This is the Breast Care Center where I had  mammograms for ten years without ever receiving a bi-rad score, and where they could no detect a hazel nut sized, slow growing, tumor from one year to the next. I was the one who discovered my tumor when it  was T1C-almost Stage 2.

This is the Breast Care Center where the radiologist, as she measured my ominous lump on the computer screen during my biopsy, said: Oh, we saw that last year. But we did not know what it was.  How about finding out? Is that not what radiologists are supposed to do? Are they not supposed to investigate a lump seen on a mammogram? Is that not why women have them?

This is the Breast Care Center where I was sent me home after a biopsy with detailed instructions on how to apply an ice pack on my breast every fifteen minutes. They told me not to have vigorous activity for 24 hours. Told me, that if I had a large area of redness or fever, I were to call them  immediately. But there was not one word what I should do in the unfortunate event the biopsy was not what they had hoped. No instructions at all how I should proceed if my biopsy was positive for cancer.

This is a letter from the Breast Care Center where its own radiologists calls me at work and tells me: You have cancer. Any questions? And hangs up on me when I, too stunned to even understand what she just told me, answers: No, no questions.

Click.

This is a Breast Care Center where a major overhaul of both procedures and training of staff is needed – an overhaul of everything from how to communicate with a patient, how to read an x-ray, what to do when a radiologist sees something “she does not know what it means.” How about consulting with another doctor? How about calling the patient back for additional x-rays? How about a biopsy?

And as part of the general over haul, this Breast Care Center should consider some new magazine subscriptions.

Most women no longer crochet doilies or make many casseroles. At least no one I know.

I will write them back and let them know my status: I will never set foot there, ever, again. The letter came with a stamped return enevelope.

Ever since my surgeon and his assistant started to babble about a “procedure with a wire” I assumed my tumor would be removed with a wire, as opposed to carved out by a razor blade or an exacto knife.  As silly as it sounds, I have been mentally stuck on the image  of a wire lasso slung around my lump.

Children often get stuck on words that will, in their immature minds, take on strange and  incomprehensible meanings. Yet children usually do not ask for clarification, they  just conjure up these bizarre images in their heads. And apparently, so do 60-year olds.

The scene playing out in my head has been this: the surgeon makes a slit in my breast, of the kind I do when I want to stuff a prune into a pork roast.

He then proceeds to take a thin wire and shapes it into a lasso around my lump before he pulls the tumor out,  roots and all, like a radish pulled up from its garden bed.

The mysterious wire procedure (needle localization) turns out to be a procedure where a wire is inserted in each breast before surgery to later guide the surgeon to the right place during the operation. It is important to have the “wire guide” where tissue is to be removed from lesions that cannot be felt, or perhaps not even seen seen by the naked eye. The exact spot where the wire needs to be is identified on a computer monitor, hooked up to either a mammogram or an ultrasound machine, and the wire insertion is preceded by the insertion of a hollow needle.

Before the needle is plunged into my breast,the skin is cleaned and numbed. The doctor and the technician checks a computer screen to make sure the needle is in the right place before a thin wire is pushed down to replace the needle.

Doctor Competent and her nurse, two middle aged women, are both jovial and seem to enjoy working as a team. They banter and tease as would two sisters on good terms, or two old childhood friends. Like a well choreographed dance troupe, they anticipate each others every move. They  respond to each other before a word is ever spoken. And they giggle and laugh a lot while still  maintaining their professional aura.

Despite their pleasantries, the procedure hurts, especially when they try to stick the wire right down in the tumor site.“But of course,” says Dr. Competent, smiling. “It is only natural that it will hurt you more in that area.” It also tickles when the nurse puts her hands on me and tries to adjust my position in the machine. I squirm and the nurse shouts: “You moved!”

“She moved again?” asks Dr. Competent.

They both laugh although they have to start the whole thing over.

Finally, I end up with a bopping extra-terrestrial antenna sticking out of each breast. The nurse bends them down and tapes them to my breast before I shuffle back to my gurney to wait for the “real” procedure.

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.”

I. Nobody in my family has breast cancer.

But: Eighty percent of  post-menopausal breast cancer patients do not have a family history.

II. I need to wait until my son’s wedding, my husbands 50^th birthday, our 20^th anniversary trip/my daughter’s high school graduation/until after my high school reunion.

But: What could have a higher importance than your health?

III. I need to loose twenty pounds. Hate to weigh myself at the doctor’s office.

But:  Mammogram centers don’t weigh you. Be sure you have a digital mammogram. Follow up with your doctor to get the result.  A recent study shows that seven percent of all significant findings don’t get communicated to the patient. No news may not always mean good news. Also, since most cancer does not show on a regular screening mammogram, insist on a diagnostic mammogram if you still have concerns.

IV. Work is crazy busy right now.

But: Won’t get much work done if you end up in hospice.

V. Lumps are usually cysts so no hurry to go now.

But: You cannot tell from the outside. Still check out:

http://www.mayoclinic.com/health/breast-lump/WO00031

VI. I don’t believe in breast cancer because I have a healthy life style.

But: You will be surprised how many skinny women with healthy life styles end up with breast cancer.

VII. I just had a cancerous mole removed and was diagnosed with Squamous Cell Carcinoma. I cannot have two cancers at once.

But: some types of cancers puts you at higher risk for a second cancer.

Check your breasts. The life you save may be your own.

My medical records have evaporated. Buried in some nuclear waste site? My “health file” at home contains a brochure regarding an ancient, and expired, insurance plan. Not a single piece of paper refers to past doctor’s visits or mammograms. Not a single reference to the benign findings of my earlier biopsy. Certainly no pathology report.

How could this be?

I never received any health reports, other than bills and the pap smear post card. Never once did I get a mammogram report or a letter indicating “birad score.” And I did not miss them.  My good health was a foregone conclusion at each check up.  Every year I went just to confirm my infallibility.

My family’s medical history is one of longevity, a smattering of depressions,  and a few scattered gallstones. Some TBC can be found in the older parts of the family tree. No cancer. Or ?

Do we really know what lurks in our DNA? Much of what we “know” about relatives is myth, many “unknowables” passed on as “facts”.  Did Uncle Edgar really die from gallstones or was it cirrhosis? Was great Grandpa August done in by a stroke or a brain tumor? Did Aunt Celia have syphilis or was she schizophrene when they carted her off?  In all probability,  their doctors may not even have know for sure.

Until the first cancer cell popped up, my health was impeccable. I have low blood pressure. Normal hemoglobin count. Excellent cholesterol levels, at least of the good kind. I never have head aches, until now when I realize how stupid I have been about my records. Obviously my “health IQ” must be extremely low.

The Breast “Care” Center has no record of any previous biopsy. Even though I clearly remember lying face down on a contraption with one of my breasts pouring through  a hole while someone pricked my breast with needles. Which breast?  What Year? No idea.  But  I do remember my appointment with a friend’s physician, Dr. D. whom I met to get the biopsy result.

-I have cancer, don’t I?

-What makes you think that?

-I described my x-rays to my friend over the phone . She told me that my description sounds just how her x-rays looked when she was diagnosed with cancer.

With a hairy slab of a hand and a chuckle, he waved me away.

Now Dr. D no longer has a practice and my records are gone.  The breast “care” center  tells me my mammogram in 2000, six years earlier, revealed calcifications .  Nothing was ever done. No records available before that year. I never received a report. Certainly no “birad score” (what are those anyway?)

“We discard all x-rays after seven years,” a lady tells me.

Amazing, considering their own radiologist told me cancer can linger for 10-12 years before it is discovered. Is the purpose of annual mammograms not to track changes inside your breast? Since mammograms are so hard to read.

I  call Dr. Bored’s office.  He retired, in fact, he just passed away. His office no longer has my records either.

I start hyperventilating, but eventually manage to calm down.  Being furious with impersonal institutions, and retired, or dead physicians is  pointless. Nobody I can  give a  dope slap. Nobody but myself.

Luckily, I have book club in the evening.  There in the company of my friends, I forget about my non-existent biopsy reports and doctor’s who don’t biopsy obvious micro-calcifications.

Dr. D. is retired. Playing golf? (A punishment in itself. ) Dr. Bored is dead, and here I am, very much alive: eating, drinking,  and laughing with my book club cronies. Who is the lucky one?

As I enter the semi-dark room for my third mammogram in a month,  I notice two large X-rays mounted on a back lit panel. One shows a breast with two lumps and a calcified area, all clearly circled in red. I assume this is the view of  my right breast and freak out at the thought of having a mastectomy, after all. (It is automatic when you have cancer in different parts of the same breast.)

Then I notice the markings in the corners. The x-ray with red circles is marked Left, not Right. It is in my right breast the cancerous hazelnut lurks – without red ink drawn around it.

My knees buckle underneath me. I sink down on the chair and stare at the back lit photos. The tech comes in, and I hope it is too dark for her to see my teary  eyes. But my voice trembles when I ask : “My cancer is only in the right breast, why do you have the left breast film up there with areas circled in red?”

The tech doesn’t seem the least bit concerned.

“No, there is no mistake,” she says calmly and continues to shuffle her papers. “The requested procedure is for the left breast.”

“No, it can’t be. I have a lump in my right breast.”

The tech walks up to the films and looks, not at my film of the right breast with infiltrating ductal carcinoma, but at  the left x-ray film before turning around.

“Are you all right?” she asks. Her tone is sympathetic, yet she keeps her distance by going back to the paper work on her counter.

“No,” I admit, “I am scared. What is wrong with my left breast? What are those three red markings for? You can tell me. Just tell me.”

“Sorry I don’t know,” she lies. But I know that she knows when she says: “Only the radiologist can tell you.”

This radiologist is another female, but she is the polar opposite of Dr. Dork  at the Breast Care Center. This new radiologist, Dr. Confident, reminds me of a cheery English school mistress: a plaid skirt peaks out from underneath her white coat. She wears high heeled – yet sensible – shoes. Her hair is groomed, but unfashionable. Her face looks kind.

Dr. Competent  tells me she has good news. Well, mostly. The big lumps in the left breast “went away” on the ultrasound. The calcifications are still there though.  Do I remember which breast and year my calcifications were biopsied? she wants to know. No I don’t.  “Then it would be medically prudent to do a needle biopsy now,” she says and she doesn’t even give me a dope slap for being so stupid. In fact, she exudes kindness, along with calm and competence. My MRI, she assures me,  is scheduled for a couple of days later. But first she needs to check those milky streaks in my left breast.

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.

Friday afternoon. I drive back to the Breast Care Center for the fourth time in less than a month to retrieve my mammograms. I need to give them to my surgeon when I see him.

Again, I ruminate  over the hopeless, pointless, and completely unanswerable question: Why did they not find my lump last year, before it grew to 1.5 cm?  Why have annual mammograms when 80% of all lumps are found by the women themselves (or by their partners)? Why at least not have diagnostic mammograms with more views?

The staff is neutral whens I ask for my x-rays, although they must know that I am now a cancer patient. Why else would I pick them up?

This is what I need: Calm indifference, no looks of pity. No sideways glances. I don’t want them to be kind. Any acknowledgment of the seriousness of my diagnosis would worry me. Did they train the staff to be neutral? Or did it come with experience? Fatigue? Did it come naturally to them after awhile, like unseeing fish eyes in the subway system where you learn not to “look?”

I wait 45 minutes for my plates because I was supposed to have called 24 hours in advance. How could I have known? It occurs to me that a breast imaging center should give women a pamphlet , or at least a one-pager, describing the steps to take in the unfortunate event that they have cancer.

During my wait, I think: At least now I won’t have to deal with Alzheimers’.

Then lightening strikes.

One does not preclude the other. I can get both cancer and Alzheimers, if I linger long enough. My supposedly slow-growing cancer, kept in check by, perhaps, Tamoxofin and/or chemo, will keep my body alive until my mind is attacked by plaques.

Sunday dinner with extended family: Sister- and brother-in-law celebrating the return of a lost son. He is now home after two years in Japan, teaching and one year in Vietnam, doing what? We are about to find out. Luke is sensitive, intelligent, and well-informed, I can’t wait to hear about his Asian adventures. Yet on the 10-minute car ride over to their house I feel restless and “antsy.”  My mind is pre-occupied with cancer.

After dinner, we linger around the long dining room table and contemplate Luke’s travel stories while we watch the candles burn down and  sip the last of the wine. I glance at Ellen’s enamel painting of the fruit blossoms, and wonder if the enamel- and paint fumes were what brought on the breast cancer that killed her. She left behind a middle school child and a high school student. I, if it comes to that, will leave behind three college educated, adult children, all gainfully employed with their own health-insurance, cars, and homes.

Still, I feel I have to tell everyone. It would be too awkward to call around the next day, or, God forbid, send a group email. I assume, my cancer announcement will no longer ruin the evening.

Every one reacts calmly and appropriately. They show concern, but don’t seem spooked. Nobody tries to gloss over or dismiss it. Even the family member who seems to most enjoy  “organ recitals” does not share her archive of maladies, not even those with favorable outcomes.

Yet, that night I feel anxious. I sleep poorly in a mix of sugar high from the dessert and the angst of what my diagnosis, now four days old, really means. I am awake at 2.30 A.M; I listen to the steam whistle blow as the train rumbles through the city of Smyrna, or was the train down in Vinings?  I am awake at 3.30 A.M, then again at 4.30 A.M. The alarm goes off at 5.30 A.M. and rescues me from my insomnia, but I am so exhausted I can barely toss the covers aside to climb out of bed.