Thursday, December 17, 2009

Rabbit Holes that Lead to Yellow Brick Roads, that Lead to OZ?: PART II

If I had not been in a public coffee house I think I would have had my second cry since this odyssey began.

Dr. Isaacs' office did call -- four hours later. The
Great Oz deigned to offer me an audience. Yipee Skipee!

"Make sure you bring a CD of your PetScan. He will look at films too, but prefers a CD."

Of course he does . . .

. . . .to be continued


So I am led to the the Great Oz' (aka Dr. Jeffrey Isaacs
) office. (And for the record, AGAIN, I am the youngest and HEALTHIEST looking individual -- and that includes patients and their care-takers -- in the bus-station sized waiting room.)

I was led into an exam room so the nurse could take vitals and prelim info. I was then led to the inner sanctum - the Great Oz' office. I found it quirky that the nurse kept insisting that I place myself in this uncomfortable looking armchair perpendicular from Oz' chair -- the one "he always sits in speaking with patients. I sat on the couch.

The second faux pas is that they left me in his office unattended far too long. Curiosity is an unshakable vice of mine. I take note of the vanity wall; the pink-ribbon "awards"; that his medical training took place in South Africa; and that from the few pictures the guy is the quintessential middle-aged++, white-haired, white male, white-cloaked physician. Oz does not disappoint. He blusters in, all six feet-tw0 of him with blazing white hair, ruddy-lined faced and an XXL white doctor's frock with his name embroidered in blue under his right lapel.

The discussion is more than interesting. Some tidbits better than others. That which I found medically useful going forward was:

1. Ultrasound is the best diagnostic tool to identify ILC (Invasive Lobular Carcinoma).
2. I may be "surgically" cured at this point, but the biology of the cancer still exists within me.
3. That ILC has a "long natural history for metastasizing" even after the surgical "cure."
4. ILC is indolent, i.e., that it is prone to late relapses (5 / 10 / 15 years) after the primary tumor is found and removed. And that this is with or without adjuvant treatment.

What I found empirically useful in making my determination not to return to the Great Oz was the heart-to-heart that he and I had about the next step, i.e., adjuvant treatment:

Oz: Chemo is for the "unknown" -- to address the biology of the cancer that still exists within you.

TC: What can you tell about my individualistic "unknown" factors?

Your "unknown" is the specific biology of the cancer that still exists within you.

TC: Deja vu? And how do we know that the cancer still exists within me? I had a radical mastectomy - nothing was left.

OZ: We don't, that is the "unknown." You must think of chemotherapy as "buying insurance." You buy it "just in case" you might need it down the road, not because you are certain that you need it.

TC: Ah. Can we speak about the "knowns"?

OZ: What "knowns" are you referring to?

TC: Well, we know that chemo has side-effects, correct? With the drugs that you are proposing (Taxotere* and Cytoxan) is that a certainty?

OZ: That is absolutely correct.

We have the results of my Oncotype DX - the "RS" score says I have only a 4% margin of efficacy if I opt for chemo, correct?

OZ: If the biology of your tumor was taken into consideration with the Oncotype, yes! (Both Oz and I later independently reconfirmed the results, directly with the pathologist at the Oncotype lab.)

TC: So the choice I am presented with is
100% certainty of side effects with 4% margin of efficacy, correct? And with this "known" you are recommending chemo?

OZ: That is absolutely correct. And, yes, I am!

TC: I am not a statistician, mathematician, or even an economist -- but that does not sound statistically sound nor a good return on my "insurance" investment, to me?

(This is where my "Aha" moment with Oz hits...)

OZ: I suppose it comes down to how much you value your life. Yes, 4% is small but a real benefit. The 4% is your only window of opportunity here to fight the "unknown." If you have any desire to be around to see your children grow and be a grandmother, then 4% is what you are dealing with.

TC: Excuse me! That sounds like a very twisted ultimatum. I value the quality of my life -- and those around me stuck with me and this disease. I am not one for quantity for the sake of quantity! What about the plethora of research that is ongoing?

You must understand we have hit a wall with adjuvant therapies. Yes there are millions of dollars raised and spent each year on research -- but it gets us nowhere. You only have one shot at this. This is what we have to offer you, and you have to do something. If we were in Sweden it would be a different story, but we are not. Let's examine you shall we?

One would think I would have walked out at this juncture. But I didn't. It is not because I had bought into his ultimatum. It was just that curious vice gene of mine again. I felt like I was witnessing a multi-car pile up, train crash, or airplane catastrophe. I couldn't walk away. . .

What more did I learn? Well, the icing on the morning was witnessing
Oz verbally tear into his nurse for not getting his exam-room printer working; Oz' decree that I had a bulky uterus and needed to have a pelvic ultrasound done asap; and his tossing me (no kidding -- he tossed) an unsolicited prescription for Tamoxifen. . . .

TC: I would like to discuss my concerns with taking Tamoxifen. I am not comfortable with this script.

OZ: EVERYTHING has side effects. Just take it and let me know by the end of October if you are going to follow my recommendation for chemo.

I left the
Great OZ, standing behind his "big voice" screen turning his control wheels. I was done with the Yellow Brick Road. I learned that I much prefer rabbit holes.

Post Script: I called the radiologist who read the PetScan and asked him to look at my results again, particularly the uterus. He did and amended his report. I went to my GYN and shared Oz' concern and the amended PetScan report. All normal.

* Taxotere:

The most common severe side effects are low white–blood-cell count, anemia, fatigue, diarrhea, and mouth and throat irritation. Low white–blood-cell count can lead to life-threatening infections. The earliest sign of infection may be fever.

Other common side effects from Taxotere® include nausea, vomiting, hair loss, rash, infusion-site reactions, odd sensations (such as numbness, tingling, or burning) or weakness in the hands and feet, nail changes, muscle and/or bone pain, or excessive tearing.


  1. Oz got my attention with, "if we were in Sweden...." What if we are in Sweden? Was he making a reference to anthroposophical medicine? If so, what studies, remedies, protocols are being offered in Sweden or anywhere else for that matter? And how do these studies compare to his emerald vision? Whatever happened to the "miseltoe therapy" research (miseltoe very specifically grown in Africa and Korea - no side effects, but with the capability to target specific cells?). It is becoming increasingly more difficult to follow the twists and turns of the unknown protocol. ~Coffey Cakes

  2. The Great Oz would not elaborate regarding Sweden other than to state: "There would be more options available to us. As we are not in Sweden, this is what we have."

    The "known" protocol is: (1) slice n' dice; (2) chemo; and (3) radiation. The variation on the "known" is (1) chemo; (2) slice n' dice; (3) chemo; and (4) radiation. This "known" has been the de jueur protocol for the last 50 years. The "improvements" have been in the tinkering with the chemo mix & the technology in the delivery of the radiation.

    The unknown protocol, for me individually, is still a work in both research & progress. At this time TC Protocol ("TCP") is: (1) slice n' dice; (2) an expansion of my supplements to include, Vitamins D3 / A / C in intense does; Calcium Lauranate, Im-Kline & DM to assist in the effective processing of estrogen in my body; and (3) the ingestion of Alkaline Water. This TCP builds on my already mostly vegetarian diet (tweeked with emphasizing certain fruits & veggies over others) and a stringent physical regimen. The latter being highly limited by the slice n'dicing. That is where creativity comes in.

  3. Get a new Oz. He sounds like a perfect AH. I have never understood nurses who allowed their doctors t0 treat them like idiot secretaries.

    Please be VERY careful with your D vitamins. Mega doses can cause serious/sometimes fatal neuro problems as they are not water soluable.

    And I do have to tell you that all med-pros are not all evil. In fact, I think the evil ones are rare...

    My RN feathers are just a little ruffled :-)


  4. You are absolutely right! And I never meant to imply that ALL (or even ANY) med-pros -- that I have personal experience with, are evil. In reviewing my postings I can appreciate, however, where I ruffled feathers. I have no intention of maligning the medical profession at any level. I am only indulging myself in expressing my personal frustrations.

    In the interest of fairness, however, I have posted a "qualifying" entry that I hope better articulates my feelings on the matter.

    Thanks for keeping me "honest." :+D