Cancer Conversations: Out of the Mouths of Medical Staff

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Stupid Interesting things are said and or shared with you as a cancer journeyer. And not just from the layperson. No. Actually, some of the more inane eye-blinking comments come from medical personnel. Case in point: I was doing the phone intake with the scheduler at Scottsdale Medicial Imaging for my upcoming chest MRI. It was late in the day, and she was definitely a perky little thing. Sounded like someone good for work-day distraction around the water cooler.

Okay TC, let me pull up your information so we can get you scheduled. We have seen you before, correct? Ah. There you are. You popped right up. Let's go through the questions...blah, blah, blah...any history of cancer?

~ Yes.

What type.

~ Breast cancer. Metastatic.

Oh yes. There it is. July 2009. Oh honey, look at you surviving over two years now! You go girl!

~ Um. Yay me!

The rest of the conversation is just commentary.

A little whining.

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I have not whined in awhile. Ranted, yes. Personally played my own pity violin - not in awhile. I am due.

I find that I am tired. Almost all of the time.

I have noticed that the dark blue circles under my eyes are becoming fixtures, and creeping slowly toward where the "apples" of my cheeks used to be. I am going through the concealer like its lip balm.

At times I sleep, literally, like the dead. Other times, the slightest sound, rustle, movement startles me awake.

The dreams are curiouser and curiouser.

The pains are curiouser and curiouser; and more persistent.

My body feels like its on full-tilt. I am so keenly aware of every breath, every rumble, every stab, stress, pull, pop. Yet, at the same time I am disassociated from it all.

Something new will manifest, and take hold. My husband asks: "are you concerned?"

Sometimes.

The little voice buried in my semi-conscious wonders "is this symptomatic of ...?..." "should I pull out the latest written orders for tests and just allow the poking and prodding to go on?" "Do you really want to do a fourth vaginal ultrasound and pelvic MRI, just because no one can definitively determine what that pesky little pain & mass are?"

I do pull out the orders that are in my vanity drawer (how's that for irony) look them over, and stuff them back inside. They have been in the drawer since January now.

My other little voice then loudly pronounces, "what would you do if they can figure it all out?" And the resounding response is, "probably nothing that they would find acceptable."

So, unless they can make a vaginal ultrasound fun -- and I am talking fun like they are able to get Johnny Depp to hold the wand, then NO, I don't want to go through it again for a fourth time in 10 months.

...
And, at the same time I am doing all this wild body-morphing activities (hot yoga, reiki-ish realignments, colonic therapy, infra-red saunas...elixirs and tonics). Still, I feel drained, spent and unmotivated. Interestingly, not when I am in the middle of an experience. Before, after.

It's life after cancer? It's life with cancer? It's life pushing 50?

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!)