Early Detection...Maybe

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The following reprinted story struck a chord.

I first noticed a small lump in my left breast in 1993. I was 32 years old. It was so persistent that I gave the lump a name . . . "Irving." We were in the midst of relocating from Washington D.C. to Arizona at the time, and I put "Irving" on the back-burner; to be dealt with after we settled into our new environ.


Early in 1994 I scheduled an exam. I was told that it was most likely a benign cyst, or the result of fibrous breast tissue. No one was concerned as I had no history or lifestyle predilections toward cancer. I was concerned nonetheless and asked how we could ascertain that it was indeed benign. I needed to put any lingering concerns behind me so that I could re-shift my focus on preparing for the Arizona Bar and caring for my two young daughters. The physician said he would be happy to do a needle aspiration in office. It was awful, it was painful (the prep part numbing the area) and it was botched. He said that the lump disappeared when he inserted the needle, so it must have just been a cyst. He put a bandaid on the site and sent me on my way.

I thought it odd, but the doctor was not concerned, so I did not see why I should be. After all, no history no factors. I had an exam to prepare for, as well as an 18 month old and 3 year old at home.

It took about 3 days before the site was not hyper-sensitive to touch. Five days later, I found that "Irving" was not MIA, but right at home where he had always been.

Starting at age 35 I started having mammograms -- about every other year. I had thought this was a good idea since "Irving" continued to keep house within me. Each time the mammogram showed what appears to be fibrous breast tissue. No one found this remarkable and I went on with my life.

Fast forward to age 47. January 2009, "Irving" starts to become painful. I am told that cancer tumors do not cause pain so that it is most likely just hormonal (spot on it was, as we later discover...certain breast cancers are hormonally driven). April, 2009, "Irving" is not only painful...all the time...but he is becoming physically noticeable in my breast. I call my GYN (not the same one as in 1994) to make an appointment. Dr. Alperin's first available is July.

I explain my concerns. The scheduling nurse pulls my file, reviews the past mammogram results: fibrous breast tissue, nothing remarkable. She notes that I am due for another mammogram. I ask if I can get that done first, so I can have the results when I see Alperin. No, the doctor or PA has to write those up. I ask if I can get into Alperin sooner than July, given my concerns. Since this is not an emergency, he is really booked up at this time for annual exams...I can have the date in early July and I can be put on a waiting list for cancellations.

July 6, 2009, five minutes in the exam room, after I explain my concern regarding the changing "Irving",  Dr. Alperin is in warp-drive urgent mode. This mass has to be reviewed immediately, tomorrow...this week at the latest. There can be no delay. I am scheduling you for a diagnostic mammogram and ultrasound. He writes STAT on the orders.

The rest, well...as I discovered, is now truly history. "Irving" turned out not to be fibrous breast tissue after all, but a 6.2 cm indolent cancerous tumor that the pathologist and medical onc believe had been "growing" for at least ten years if not longer...say since 1993?

Early detection? I was not one of the 1900 women that it purportedly benefited. Indeed, going through the processes of early detection appeared to lull everyone, myself included, into believing I had nothing to worry about. At least not until I presented with something that could not be ignored. BTW - I found out later, which has been confirmed times over, my form of breast cancer (invasive lobular) is not detectable through the conventional "early detection" methods. Why? Because it is usually misdiagnosed as fibrous breast tissue.

The Accidental Breast Cancer Patient

After a revolving door of mammograms, cancer medication and lumpectomies, one woman wonders if early screening is the best method of preventing breast cancer.

My 40s have been haunted by mammograms. This may sound ungrateful, considering I'm a breast cancer survivor whose cancer wouldn't have been discovered without them. But my breast history is as complicated and inconclusive as the debate over the new screening recommendations. So I'll just say it: I'm not sure if early screening was a good thing for me.

I entered my 40s an ox: strong, invincible. I practiced yoga, kayaked, rarely got sick. So when I went in for my annual mammogram, at 41, I was shocked to be told that my films looked "suspicious." I had no risk factors. No cancer of any type in my family. I had my first baby at 28. But none of that mattered.

Next thing I knew, I was strapped to a surgical bed for a biopsy. The verdict: benign. I had something called atypical hyperplasia, an accumulation of abnormal cells that could be precancerous-or not.

After two weeks on the couch, my chest wrapped in gauze, I was left with a small scar, a bruised psyche, and chronic fear. I was now on the close-watch plan, which required mammograms every six months, as well as callbacks for additional examinations. This increased scrutiny was considered a good thing, and I tried to see it that way, but honestly, I dreaded the appointments, those extra films, the anxious waiting.

At 43, that scrutiny found "suspicious" calcifications. Again, no lump-just a tiny cluster of white, seen only by mammogram. This time I had a core biopsy, which entailed being smashed facedown on a surgical bed, my right breast squished into a hole while a long needle went fishing for cells.

Again, benign.

But I continued on close watch. More paper gowns. More films. More fear.

At 45, the mammogram again showed tiny calcifications. And again, I found myself strapped to a surgical bed-this time for a lumpectomy.

The pathology came back: ductal carcinoma in situ (DCIS), cancerous cells in the milk duct. I was spared radiation and chemotherapy and was prescribed tamoxifen-an antiestrogen with a long list of side effects, including insomnia, hot flashes, and possible increased risk of uterine cancer and heart disease. A recent study also suggested that it may increase risks for hormone-negative cancers, a more aggressive form compared to the hormone-positive cancer that I was thought to have. To complicate matters, a Mayo Clinic pathologist I later consulted believed that my DCIS was actually another case of atypical hyperplasia.

Benign.

So did I need all those tests? All that treatment?

I wish I had a definitive answer. The confusion brings up an uncomfortable truth about medicine: Recommendations are based on population studies, not individual cases. My heart goes out to every woman saved by early diagnosis, but, as breast expert Dr. Susan Love has said, screening before 50 is tricky: Younger women have dense breast tissue; it looks white on a mammogram, and so does cancer-it's like "looking for a polar bear in the snow." Tumors are missed, and non-tumors are biopsied. Worse, Love says, "The risk of radiation is higher in younger women and cumulative. Additional cancers caused by the radiation have to be weighed against the ones found."

For every one in 1,900 women who is saved by early detection, how many women are harmed? Will I be harmed? This we do not know.

What showed up in my mammograms may have been an overreaction to my body's changing hormone levels. It's possible that if I had waited for my first mammogram at 50, they would have resolved on their own. Autopsies on women in their 80s and 90s have found DCIS that likely existed for decades and never spread.

Did the cells excavated from my core biopsy at 43-and all those mammograms-actually cause the DCIS? Or would those "suspicious" white spots, left undetected and untreated, have eventually grown into an invasive cancer-and killed me? I don't know. Doctors don't know.

What I do know is that it's up to me to treat my body with the utmost love and respect. So I feed it organic foods and sweat every day-do hot yoga, have sex, run marathons. Anything to make my heart race and skin flush. Anything to make me forget the breast cancer diagnosis and all those mammograms.

Gail Konop Baker is the author of Cancer Is a B****.
Originally published on February 19, 2010

Nurse Tracy Calling

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Four Winds Oncology, can you hold?

Of course

May I help you?

May I speak with one of Dr. Obenchain’s nurses?

I’m Nurse Tracy, I can help you.

Oh hi Tracy. I don’t believe we have met before. This is “TC” I got a letter from SMIL stating they it was imperative they do additional studies, to supplement my breast MRI last Tuesday. I have called them. They want to do a mammogram on my right breast and an ultrasound on my left. They will need the doctor to fax over orders. But, I have a couple of questions that I need answered before we proceed.

Of course. Tell me what they are and I will talk to doctor and get back with you, and I will talk to her about the orders.

Thank you, my questions…concerns, rather are (1) since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram – even a diagnostic mammo, why do we need to do either? SMIL said that the MRI images were perfect in clarity; and (2) what is SMIL seeing on the MRI that makes them (a) want to do additional exams, and (b) what less comprehensive exams tell us that the MRI can’t?

I can’t answer those questions, I will have to request the report, have doctor review it and call you back.

Yes, I realize that, thank you. I would appreciate you following up with the doctor, thank you.

4 hours later….

Ms. TC, this is Nurse Tracy calling from Dr. Obenchain’s office. I have your answers. SMIL says that they do not have a current mammo on your right breast and want it for their records, so that is the reason for that follow up exam. Regarding the ultrasound, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there. That is the reason for the ultrasound request. The doctor said that's fine, and I am preparing the orders to fax over to the lab now.

Oh. What about my initial question?

What was that?

My question of necessity. Since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo, why do we need to do either?

Oh, as I said, because SMIL says that they do not have a current mammo on your right breast and need it for their records. And, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there.

Right, I understand what you are relaying as SMIL’s reasons, but isn’t it true that the MRI, that was just conducted 6 days ago, is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo. And as such, that it should give both SMIL and Dr. Obenchain the information they need to determine what is going on with the scar tissue as well as the status of the right breast?

Ms. TC, you haven’t had a diagnostic mammogram on the right breast in over a year. With your history, you need to have a diagnostic mammogram at least annually.

Tracy, I don't think I agree. I am not so sure that is necessary, in light of my history. The mammograms are not as effective as detecting ILC as an MRI.  My individual history includes the sequence of diagnostic events, in order of certainty, as: (a) diagnostic mammogram; (b) ultrasound; (c) biopsy; and (d) MRI. Knowing all this, I raise the question - isnt doing a mammogram now going backward, diagnostically speaking? And, therefore unnecessarily exposing me to radiation?

Ms. TC, radiation exposure to mammograms is minimal. You got significantly more radiation exposure with the MRI.

Um…Tracy. I don’t believe that is completely accurate. My understanding is that an MRI does not involve exposure to ionizing radiation. Doesn't an MRI use magnetic fields and radio frequency pulses – not radiation. Mammograms, on the other hand, do indeed use ionizing radiation – I know the radiation levels are not astronomical but it is certainly higher than an MRI. Besides, aren’t there more risks of false positives with mammograms than MRIs?

(Pause...heavy sigh...) Ms. TC, it is your choice as the patient, if you do not want to have the mammogram that is just fine. I will note that you are declining the mammogram here in the file. Is there anything else, otherwise I do need to attend to other patients.

What about the necessity of the ultrasound? My understanding is that the MRI would be more conclusive in determining what is going on with the scar tissue than an ultrasound.

Again, Ms. TC, it is your choice if you do these exams or not. Doctor has signed the orders. Just let our office know what you decide. Have a good day.

I hung up and immediately started writing. Since the beginning of this journey I have always kept a journal when meeting with or talking to any and all medical professionals. There is too much information and bias that is thrown out there, and taking notes is the only way I can properly process and distill everything in my own time and context. With the second conversation, four hours later, I was keeping copious notes. I wanted to confirm for myself whether or not my questions had indeed been answered - or not. It is entirely possible that I am suffering some residual effects from last week’s concussion and was just not "hearing" Nurse Tracy. Though, I am fairly certain - upon review, that the substance of my questions were never addressed.

Thank you, Nurse Tracy, you have a good day too!

The Dichotomy of the Cancer Industry...the ongoing saga..................?

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Dichotomy – splitting into two polarized groups; opposed by contradiction; differentiated between practice & theory

It is that time for me to get the full work up and see where I have been. The breast MRI. It gives the ONC a hindsight snapshot, allowing her to peer into what my boobies have been up to this past year.

The breast MRI is the annual gig. The PetScan is done bi-annually to see if those bugger cancer cells have decided to nest anywhere else in my ample frame (I am 5'1" ...almost; and 103 ...on a good day).

Here's the issue. I am being told (and by no means am I willing to take this as the definitive last word) is that my private PPO health care plan will most likely not pick up the tab on the MRI unless a mammogram demonstrates its indicated. That in itself would not be unreasonable ...except... (and yes, here it comes) IT HAS BEEN AND STILL IS MEDICALLY RECOGNIZED THAT MY CANCER (ILC) CANNOT BE DIAGNOSED WITH A MAMMOGRAM!

To add insult to the idiocy, a mammogram would unnecessarily expose me to radiation (and radiation is bad). The form pushers at the PPO, however, are saying that they need the "inconclusive" mammogram (again) prior to authorizing the MRI (note, this thinking does not take into consideration what I, as the patient, needs). The inanity (I am so liking the "i" words today) is that the MRI facility says that this is not uncommon (the paper pusher garbage that is) and they typically schedule the mammogram 1/2 hour before the MRI and then there is no delay, both are paid for, and I can be on my merry way...having been exposed to an unwarranted dose of radiation (that may ultimately result in...?) and costing the insurance company more $$$...all so the proverbial boxes can be checked.

If I cannot win this current pissing match regarding my OWN health care? Well, it appears that by insisting on doing what is medically required, and no more --- i.e., outside the parameters of protocol, the price tag for my independence would be $1800.00 out of pocket.

Decisions of a "General Contractor" - To Trust or Not to Trust

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. . .The question in my mind is: is it necessary to do anything?

While I ponder that unceasing question, I have begun introducing bee pollen into my daily regimen. (As well as reading the "Beatles Anthology" from cover to cover - I'm up to the year 1965!) What the heck. It makes as much, if not more, sense than what I keep running into in the medical arena. . . .

Well . . .

I have been pondering the question, and I have come to one decision: time to change Dr. GYN. It's sad - as I have been with this same group since 1995, and it may seem a bit reactionary, but I cannot overlook the historical facts.

Fact one: it was this GYN group that had put me on Paxil, and kept me on it during a pregnancy. Paxil is now known to cause birth defects and miscarriages. That pregnancy ended in a long & drawn out miscarriage as we watched the fetus's heart beat slowly slow down over time. At that time, I kept questioning what was causing this miscarriage, and if it could be the Paxil. Dr. GYN was adamant that Paxil had no known side-effects that would cause a miscarriage. In their defense, the public's knowledge of Paxil's side effects is just now becoming more readily accessible. My research at the time (1998) however, did uncover that there was indeed room for concern. I took myself off the Paxil and went on to conceive and give birth to a healthy baby boy three years later.

Fact two: it was this GYN group that gave me injections of progesterone for 6 months to treat my amenorrhea. This was after my mammograms and physical exams identified a palpable mass that was mislabeled as "dense fibrous tissue." The current information on progesterone is:

Scientists at Michigan State University (The team of faculty is part of MSU's Breast Cancer and the Environment Research Center, one of four centers nationwide funded by the National Institute of Environmental Health Sciences and the National Cancer Institute. The center brings together researchers from MSU's colleges of Natural Science and Human Medicine to study the impact of prenatal-to-adult environmental exposures that may predispose a woman to breast cancer.) have found exposure to the hormone progesterone activates genes that trigger inflammation in the mammary gland. This progesterone-induced inflammation may be a key factor in increasing the risk of breast cancer. . . ."Progesterone turns on a wide array of genes involved in several biological processes, including cell adhesion, cell survival and inflammation," said physiology professor Sandra Haslam, co-author of the paper and director of the Breast Cancer and the Environment Research Center at MSU. "All of these processes may be relevant to the development of breast cancer."

Fact three: This GYN group is the same group that did not question the identification of the mass in my breast as "dense fibrous tissue." The mass was initially identified in 1993 (while I was still in law school) and then again in 1995 when I was referred to the current GYN group (after we moved to the Southwest). The mass at the time was negligible in size (as compared to the 6.2 cm malignant tumor that was excavated from my breast in August 2009). Rather, they went with the radiologist's report. I did not know enough at that time to question the veracity of the radiologist's report myself! Hindsight is proven once again to be 20/20!

Inter script - ILC (invasive lobular carcinoma) can really only be conclusively diagnosed through an MRI. No one offered or suggested an MRI beginning in 1993. I did not know to ask. Why would they think to do so? Why would I ask? As far as Dr. GYN and I knew I had no risk-factors to direct us to think in terms of breast cancer. My issue, however, is that when I became acutely symptomatic in early 2009 (and it took me nearly 3 months to get an appointment with Dr. GYN) with minor research I discovered the need for an MRI as a definitive diagnostic tool, as opposed to the conventional diagnostic mammogram. Dr. GYN did not send me for an MRI, he sent me for a diagnostic mammogram.

Fact four: I am now being "diagnosed" with Ovarian Remnant Syndrome (OSR) although, again, my research informs me that this can only be definitively diagnosed by an MRI. Again, Dr. GYN did not suggest doing this. Why is this important? Well, in my own research of how ILC metastasizes, the ovarian area is particular susceptible. The MRI may be the only way for me to put to rest the...my...question of what this "undefined residual tissue" really is.

Daily mantra: I MUST NEVER FORGET THAT I AM THE "GENERAL CONTRACTOR" OF MY OWN HEALTH & WELL-BEING

(oh...btw...I am now into 1966 in the Beatles Anthology! Fabulous escapism!)