Whatever it was that showed up on my friend Elise’s mammogram, it needed a biopsy. A different doctor might have said “Let’s wait and see. Come back in six months.” But not Dr. Guru, he claimed that a biopsy was “the medically prudent thing to do.” So Elise went ahead and had her biopsy “just in case.”

It was a lucky thing too. Elise’s voice was shaking a bit when she told me they found cancer.  This was the second time in twenty years she had received this dreaded diagnosis. You’d think one gets jaded, but that is not how it works. If anything you are far more scared the second time around. You cannot help but think: “What is wrong with me?”

Dr. Guru assured her “it ” was early and extremely unlikely to have spread. She was relieved thinking she could probably avoid the much feared chemo therapy. Elise had a mastectomy, what the heck, her other breast was already gone. Why not even out the front side and avoid radiation?

That evening in the hospital, Dr. Guru stopped by her bed to check on her, and to tell her that he found a cancer cell in her sentinel node. On top of that, it was a different kind of cancer than the one he found in the breast. Elise could tell how shocked the normally cool Dr. Guru was at this unexpected turn of events.

After a review of the pathology report on both cancers, Elise’s oncologist allowed her to skip chemo therapy and opt for hormone therapy only. She is doing fine – so far. That is the horrible thing with cancer: you look good, feel good, and whoops, a little cancer cell jumps up and rakes havoc with your life.

I am telling you this to let you know: always look into something that is “probably nothing.” Yes, a breast biopsy is not pleasant, but it is no worse than getting a crown at the dentist, and infinitely much less painful than a bee sting. Remember the words from Dr. Susan Love: breast cancer is not about statistics, it is about the individual.

When you hope for the best always plan for the worst. Medically, it is the prudent thing to do.

My surgery is expected to take two and half to three hours. Dr. Guru promises that he himself will do the whole procedure. “Won’t even let a second year student help,” he says. He will make a slit in the twelve o’clock position on my right breast,  a slit under my right arm, and a slit on the left side of my left breast (where the titanium chip is implanted.)

Everything, Dr. Guru scoops out will be sent to  pathology although both my breasts have been biopsied already.  This time the pathologist will have bigger samples to work with and it will be easier to make sure that earlier biopsy results are correct.

The windowless operating room is surprisingly small, and seems crowded and noisy. Several people in scrubs sit by a table at the far end of the room facing  monitors lined up  in front of them. I am surprised at how many persons seem to be here. What are they all going to do? Then a voice announces that a lumpectomy is about to take place on a post-menopausal female. That has to be me! (Although I never think of myself in those terms.) All of a sudden, I realize how young everyone looks behind their masks down there by the monitors.  Medical students!

Dr. Guru II, my anesthesiologist, guides me up on the table which is shaped like a cross. Electrodes are placed on my back and my chest.  A pair of foam boots without feet are put on my legs. (They will massage my calves so I don’t get blood clots.) I lie on my back, arms stretched out.  My head is covered with a shower cap, the rest of my body, except for my breasts, is covered up with sheets.

All around me: a steady hum of activity:  instruments rattle, machinery blinks, people talk. Despite the busy  atmosphere, everything  seems under control, relaxed and congenial.

“Here is your glass of vine for today,”  says Dr. Guru II, a syringe in one hand, as she grabs the tube I am attached to with the other.

“Oh, you really read that crap people put in your pre-op questionnaires?” I remember thinking, but I suspect I am out before I give her my flippant response.

When I wake up I am back in a chair in the same area of pre-op area where my gurney used to be.  I have no idea how I got here. Did they really lift me off the table and put me in this chair?

I don’t feel the slightest pain, nor drowsiness or grogginess. Last time I had anesthesia I was told over and over again that I had a boy and a girl. Still I kept asking: What did I have?  I remember not being able to lift my limbs. Even my eye lids were too heavy to open as if they had been glued shut.  Back then my whole body felt as if it had been filled with lead. Not this time.

“We have different drugs now,” the nurse tells me. “They are much better than before.”

I feel completely free from nausea and clear headed. Actually, I feel light as a feather, perhaps my imagined weightlessness is from the idea that my tumor is now out. I am cancer free.

Then I remember the blue ink that was supposed to stain my lymph nodes (sentinel node biopsy.)  Did Dr. Guru find cancer cells in any of them or what?

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.

Thursday, I only have one thing on my mind, one thought circling my brain like a  hungry wolf.  I want to go under Dr. Guru’s scalpel, I need for him to get rid of my nasty, ugly tumor. Now.

Not a word from Dr. Guru’s office.  Not a word about the MRI results.  Not a word about a surgery date. Yet another week-end of uncertainty looms before me.

I can only assume now that my surgery will not be on Tuesday. Annoyed at being in limbo, I call Dr. Guru’s office. His assistant, Joy, has left although it is only 4.15 P.M.  Of course, I left my own office at 1.15 P.M., three hours earlier than Joy left hers. But I am not an oncologist or surgeon. My job is only about money, not about  life or death, not about anxiety and worry.  And my territory is Europe where 1 P.M. Eastern standard time means 6-7 P.M. : Happy hour in London and Paris.

Yet there is an upside to breast cancer: people care more than I could have imagined. Six friends call me in the evening to ask about my MRI result and about a surgery date. They, too, get huffy and annoyed when they hear that I don’t know.

One friend, who calls me from Sweden  to check up on me, says:”We love you!”  before she hangs up. We have been friends for more than 40 years. She has shown me in a million different ways how much she and her whole family cares, but for the first time she says:  We love you.

No MRI results. No pathology report on the calcification in my left breast. No surgery date  – yet – to remove the cancerous hazelnut in my right breast. Five weeks have passed since I received my diagnosis. Five weeks since I was told I may have lived with breast cancer for a whole decade. And it is still there.

I am stressed. I am short with people.  I can tell – even without a mirror – how my whole face looks dour and unpleasant. My tone is whiny, my words cranky.

I sleep poorly at night. My insomnia is, in part , because I cannot stop myself from reading “cancer books” at bedtime. (I try to stay away from the internet at night. Once you enter that galaxy you might as well disappear into a real black hole in outer space.) After a life time of ignoring anything medical, I am obsessed. And confused.

I read about the predictors that constitute high risk for recurrence. Breast cancer cells like to escape your breast and sneak away via your lymph node system. They metastasize most commonly  to the bone, the liver, the brain, and the lungs. With both hands I press my neck and explore my  arm pits to check for signs of swollen lymph nodes, just like my doctors now do first thing I meet them.

Suddenly, the bone in my foot feels tender and painful. At first, I try to tell myself it is from my new shoes.  But then I manage to talk myself into that my breast cancer has metastasized to my bones. Normally, it does not start in the extremities, I have learned. It starts in the ribs, the femur, the shoulders, not your toes or ankles. I feel a bit better. Then a stitch in my side becomes metastatic breast cancer to my liver. A mild pain behind my ear becomes a brain tumor. A cough and I am sure it has spread to the lungs.

I lie in my bed at night and imagine the cancer cells floating around inside my body, nibbling at my organs, like guppies darting around in an aquarium, nibbling at their food.

My pendulum swings between knowing that I am completely ridiculous  and knowing that I, despite all odds, could be stage IV. This is the stage about which Dr. Susan Love  in her Breast book says: Take care of your affairs and make plans for how to live  in the time you have left.

But I don’t make any plans or take care of my affairs. I just continue to read scary statistics and get high on the anxiety fumes.

After the MRI, I am scheduled for a biopsy of my left breast. Do I have cancer there also? The Breast “Care” Center, where I had my annual mammogram less than six weeks ago, did, of course, not even mention these calcifications. Did they see them?  I guess I am lucky they finally noticed the  hazelnut in my right breast.  Again, it proves that you have to be careful about where you have your mammogram, and careful about who reads them.

For the biopsy, I have to lie on my side while an x-ray machine squeezes my left breast between two plexi-glass plates until the image of the inside of my breast shows on a computer screen across the room. The room is dark, the light from the computer monitor eerie blue.

A tech cleans my breast before Doctor Kind enters the arena. He is elderly, jovial, and mild mannered. But it still hurts when he numbs me up. He pokes his instrument into my left breast, a clicking sound proceeds each plunge of the needle.

I lie there, uncomfortably, on my side in the windowless room with its low ceiling and claustrophobic atmosphere. Diagnostic radiology must  be the most boring job in the entire world. These doctors spend hour after endless hour  plunging needles into squirming patients while trying to read the images on their computer screen.  How interesting could this be?

Most of these patients will be stressed and worried about the type of specimen the hollow  needle will pull out, anxious over what the pathologist might see under his microscope.   At the same time, I feel  lucky that diagnostic radiologists choose this boring profession and are willing to spend eight years, or more in training to perfect their skills.

Dr. Kind assures me, in his soft spoken way, that he is 95% sure my calcifications will be benign.

“Should they, against all odds, not be benign,” he says. “It will be early and possible to remove without further harm.” By now I know my cancer lingo: Should the cells be malignant, I will have in situ cancer in my left breast,  not invasive, and the cancer would be unlikely to have spread else where in my body.

The good doctor inserts a titanium chip, smaller than a sesame seed, to mark the suspicious site so that if the findings are not what he hoped, the surgeon will easily find the bad spot.

That same evening, around 8.30 P.M., Dr. Kind contacts me at home to see how I am doing. I am moved by this dedication. He easily could have had a nurse or assistant call, or a computer for that matter:

“If you feel good press one, if you feel bad dial 911.”

I tell my husband that I am impressed and have a whole new opinion of the medical profession.

“Well any opinion you have would be new,” he says. “Given your limited exposure, you probably meet doctors more often at cocktail parties than as a patient.”

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.”

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?

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.

Three people assist with the ultrasound biopsy in a dark, windowless room. How depressing to toil down there all day, glaring at a grainy screens, lathering up lumpy breasts with gel, trying to find what the patient does not want them to find: carcinoma. Suddenly I feel sorry for everyone in that room but me. I will be out of there shortly, but the staff will stay in their dark tomb of their choosing, day in and day out, for years.

The nurse is big-boned and has blond, cotton candy hair. She chats about cost of air-line tickets and the horror of summer travel. I make some joke. She laughs.

Then I joke about how the gel around my boob reminds me of Ghostbusters. The room is quiet. Nobody laughs. Maybe they are all too young to remember Ghostbusters. Maybe they have heard it a thousand times before.

A black ultrasound technician hovers behind the radiologist and blends in with the shadows. The female radiologist, 40ish and slender, is all business with her brisk clinical manner, has no words other than instructions for the tech.

The physician cleans my breast and inserts a needle. The prick does not hurt. The breast numbs up right away. Large knitting needles are inserted in different places. But not where the lump is. It is the lump I am worried about.

I turn my head to glance at the monitor where an asymmetrical shape fills the screen. Doctor R or D, whoever she is, drags the mouse and creates lines diagonally and crosswise and lengthwise: Measuring.

It does not look promising. My heart beats faster. The atmosphere in the dark cool room: the tacit doctor, the skulking tech, and the nervously chatty big-boned nurse. It all amounts to: NO GOOD NEWS.

“It is cancer!” I want to scream. “Tell me the truth!” But I know they will deny it, say something bland and insipid. Any attempt by the staff to minimize or gloss over what I just saw on the screen will scare me more than cold facts later.

Afterwards, I quickly escape into the fresh air of the June day. I am free with my lump. The staff is still trapped down in their basement.  Statistically, I realize, I have at the most 30 years left on earth, no matter what the lump in my breast might be. The thought is comforting and a little scary at the same time.