Questions...

******

QUESTION

Hello TC,

We are trying to locate a doctor in for my daughter, and it's not easy. Do you have any suggestions on find the best MD?

We have the name of an Oncologist (a highly recommended woman doc), and thought that it was the Onco that did the surgery. Now we understand that a surgeon does the operation and the Onco handles the case afterwards. Are we correct about this?

Thanks much.


RESPONSE:

The “traditional medical team” is made up of the following:

Surgical oncologist – this person is integral in the initial stage, but a transitory person in the long haul of the journey. They are the person who your daughter will work with on determining if and if so, which sort of surgery is appropriate (e.g. lumpectomy, mastectomy, nipple-sparring, tissue-sparring, NO surgery at all). Once healed from the surgery, and margins are clean, this medical professional ceases to have a role.

The surgical oncologist, however, is the doctor you request to have the tumor and tissues sent to Genomics in California for the Oncotype DX test. If the surgical oncologist won't do it, then insist that the medical oncologist does. Don't be talked out of this test - it is the only reliable determiner available to us in the U.S. to gauge the efficacy of chemotherapy on our individual cancer. (There is a Mammaprint test available now as well. The problem, the only lab that has the patent on this is in Phoenix, and a Mammaprint can only be conducted on "fresh" from the slab tumor/tissue.) I was also told by several pathologists that the particular patent that the Phoenix lab obtained is not quite the same caliber as the one in Europe.

It is also after the surgery and the pathology analysis that she should then have her results sent to Michael Lagios, MD in Marin County for re-evaluation and adjuvant treatment recommendations. (See blog entry dated January 23, 2010.)


Medical oncologist – this is the person whom you have a life time relationship. They advise and help you determine if and what type of adjuvant treatment she will have (i.e., chemo and other drug protocols [tamoxifen, etc.])They follow you for the first year or two every 3 months, 2-5 years every six months, and thereafter annually – they follow you to track recurrence. This is the medical person that you use to determine your long term quality of life. (And, this is the person that I personally am having a tremendously difficult time in finding that fits with my perspective on my cancer. I have interviewed four so far.)


Radiation oncologist – this is the person who, if you choose to do radiation, will handle that portion of the adjuvant treatment. There are great variances in this field so interview radiation oncologist thoroughly. Ask what type of equipment they have and how they target the chest wall. Radiation can have serious side-effects ranging from skin-burning to weakening of the heart. Make sure that if you choose radiation, that you do your homework!

NO TREATMENT DECISIONS SHOULD EVER BE MADE OUT OF FEAR...! The only long term decisions that you can live with are the ones you make from a point of knowledge.

Reconstructive surgeon – (aka a plastic surgeon who specializes in reconstructive surgery). This specialization is absolutely necessary to have any sort of livable outcome. A good surgical oncologist will work with the reconstructive surgeon and allow them to determine the incisions, since they do so from a perspective of your long term, dare I say . . . aesthetic, outcome.


For me, the integral person has been my naturopathic oncologist. Not many reputable ones around, but I found the one who developed and formalized this area of alternative medicine. It is this doc, Daniel Rubin, ND FABNO, whom I am working with in developing my adjuvant treatment -- I have opted out of the traditional protocol of chemo/drugs/radiation.

Finding is a good medical oncologist is difficult. I suggest that your daughter speak to the surgical onc and get a few names of whom they work with. I would also google med oncs in your area and get names and then start looking up their medical profiles and histories. I also found that using “healthgrade.com” (it’s a paid on line service) was good in reading patient reviews of doctors. Once she has a short list, and has done her due diligence, start face-to-face interviewing – go in with her notebook and questions ready!

The most important thing to remember is that the patient needs to do the interviewing (not the other way around). The patient, is the “employer” and/or “general contractor” of her own healthcare.

TC

TC's Post...Post Script

I completely forgot to mention the involvement of a geneticist! Early on this journey, after my first interview of a prospective surgical oncologist, I met with and got tested by a geneticist. This was to help answer the WHY??? The purpose was to determine if I had any genetic predisposition toward cancer. Having no information or contact of and with my biological father in 42 years, I could not definitively say there was no family history of cancer. The answer to this question would help guide me on this journey, and help answer questions regarding my children's future. This is the testing for the BRCA1 and BRCA2 - in addition to looking at other genetic markers.

I pleased to say I passed the test -- no genetic predispositions!

If you are a women of Ashkenazim descent, there is an additional genetic screening that should be done.

Med-Pros Revisited . . .

******
For the record...

I never meant to imply that ALL (or even ANY) med-pros are evil, per se. I have never meant to imply that the med-pros that I have been personally dealing with are themselves evil. My personal experiences do not reflect a general banality of evil in the medical profession, but rather, I believe, a critical flaw in the manner in which our medical system is run in this country. (I say, in this country because I am not familiar enough with the medical politics of other country's health care systems (although I have been a patient in a few). My personal experiences have informed me that the "flaw" in the U.S. medical system is that the profit margin of pharmaceutical companies have far too much influence upon the education and training in our medical schools, as well as our "regulatory" government agencies (i.e., FDA). I also believe that med-pros who think "outside of the pharma box" are penalized if not ostracized, because of their potentiality in negatively impacting pharma's bottom-line.

My first medical onc - Kato, was the most pleasant man. I truly enjoyed our conversations. When push came to shove...meaning when I pushed him outside of his comfort zone, his "world weariness" kicked in and he became ineffectual for me. He could only offer me the cookie-cutter approach -- which was confirmed (and he acknowledged) would have little to no effect on my breast cancer and lots of harm. His "medical tool box" was severely limited.

Dr. Lise Walker, my surgical onc for the mastectomy, was more than competent (and had a good beside manner). If and when I have to consider a mastectomy on the right breast, I would go to her again. She was also instrumental on my "quest" to look beyond the prix fixe menu of adjuvant treatment as it was on her office shelf that I was introduced to "What Your Doctor May NOT Tell You About Breast Cancer" by John R. Lee, M.D.

Dr. Coral Quiet -- the radiation onc whom I consulted numerous times and whom I too pushed outside of her comfort zone -- when pushed, gave me the name of Dr. Michael Lagios - a consulting pathologist and head of the breast cancer center at Stanford Medical Center. Lagios was integral in my decision not to pursue conventional adjuvant treatment.

Dr. Bryan Gawley - reconstructive surgeon. . . well, as I wrote on his holiday card: "All the king's horses and all the king's men couldn't put Humpty Dumpty together again; but Bryan and his nurse Brenna certainly could!" (Though I still look in the mirror and feel that a black teased hair-style with white bolt streaks on the sides would be more fitting for my new "look.")

Except for the one nurse who unnecessarily assaulted me with a catheter when I was being prepped for surgery this last time (she was stressed that I had not peed for a pregnancy test, and felt that I was unable to waive the test as I had been given a "happy" injection into my IV already) I have not had one single complaint to blog about with regard to the plethora of nurses that have assisted me. I have always known that if you want the true scoop on an individual doctor, get to know the nurses in their practice. It was Oz's belligerent treatment of his own nurse, as well as the general malaise of his entire nursing staff, that solidified my truly negative impressions of him.

Indeed, I do not even view "Oz" as evil. Pompous, arrogant, rude, belligerent, bastard, ass-hole definitely. Evil, no.

"Evil" requires a certain malicious intelligence. And, fortunately, I have not come across any med-pro whose IQ leans in that direction.

A Little Further Down the Rabbit Hole (or am I now tripping down the Yellow Brick Road???): PART I

******

After my last free fall with the radiation onc (refer back to September 24, 2009) I decided to follow her advice. I went forward in pursuit of the 3rd and 4th consults. Heck, why not? I think I am turning into a med-pro junkie. My tete-a-tetes with the med pros have opened my eyes in so many ways that I just can't get enough of them. I just need to know what they will say and do (or not do) next.

So off I went.

The first adventure began with trying to get the appointment with the first recommended 3rd medical onc. Radio onc encouraged me to meet with the famous Dr. Jeffrey Isaacs, because "he has a brilliant mind." I recalled the name - he had been referred to me by a medical malpractice attorney friend. I had actually called his office during my initial investigations, and was told that he would not see new patients prior to surgery. Consequently, I had drawn a line through his name back in July.

Radio onc warned me about Isaacs' front office staff's personality deficits. (Yes, I begin recalling a prior surly encounter.) She advised me to "smile and nod" because meeting with him was so worth the frustration..."He's got a brilliant mind for tough cases!" And she assured me that her personal nurse would help get me an appointment. Yeah right! I don't think I had ever seen a 50-something, salt n' peppered lady roll her eyes until then.

To that "instruction" radio onc's personal nurse sighed heavily and said, "you call first and see what you can do, if you can't get an appointment let me know." Thanks personal nurse, Beverly.

But, I was intrigued (not by the eye-rolling, mind you). So I called Dr. Isaacs office, again. . . .

==================

"Have you consulted with, been seen by, or started treatment with any other oncologist?"

Umm, I tried to consult with Dr. Isaacs previously, but I could not get an appointment pre-surgery.
"Have you consulted with, been seen by, or started treatment with any other oncologist?"

Umm, I have been meeting with another oncologist, but I am not pursuing treatment with him. My radiation onc...[insert name]...highly encouraged me to discuss my case with Dr. Isaacs.

"Dr. Isaacs will not meet with anyone who has consulted with or has been seen by any other oncologist."

But, radio onc is the one who referred me to Dr. Isaacs. You see, I have this high-risk complex situation.

"Honey (oh you so did not just say that?), you and everyone else. Dr. Issacs is a very busy and sought after specialist. He only sees new patients that have not consulted with, been seen by or started treatment with any other oncologist. He is selective." (Who anointed this guy the "Great Oz"?)

Oh, then why would radio onc insist I meet with him?

HUGE SIGH...SILENCE..."Ask radio onc to fax over your file. Dr. Isaacs will review it and will determine whether or not he will meet with you."

TIGHTLY GRIPPING THE COFFEE COUNTER...Thank you, may I have the fax number?

"Radio onc's office will have it. The records must come from her office. Someone will call you in a couple of days with Dr. Isaac's decision." ~CLICK~

Beverly? T.C., I just had an interesting conversation with Dr. Isaac's office...blah...blah...blah

"So, you are asking me to fax over your records?"

At the least. Do you think you can call, as radio onc offered previously? See if you have better luck?

"They asked that the records be faxed?"

Yes...
"So you are asking me to fax the records over?"

Umm, yes, but would you also call?

"They asked for the records, I can fax the records if that is what you are asking of me."

MY KNUCKLES HAVE LOST ALL BLOOD FLOW AT THIS POINT.... If that is all you will do to assist me, then yes, Beverly, do fax the records.

"I will fax them shortly." ~CLICK~

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

Breaking the Cookie ... ta-da-ta-da-ta-da-da- dum ...

******
So. The inscrutable Kato (my medical oncologist) sat down with me yesterday morning. He smiles his worn smile and says: "based on the results of the Oncotype DX* test I would not benefit from chemotherapy." And, why the surprise? 

Rewind: this is the same onc who, if I had unquestioningly followed his prescribed standard of care protocol, would have started chemo . . . LAST WEEK! The "Red Devil"** being pushed first and heavy!

Rewind: the Oncotype DX is the test I researched, brought to him, and insisted be conducted!

Why the 180? Because ... ta-da-ta-da-ta-da-da- dum ... the Oncotype DX determined that my Recurrence Score ("RS") is 16 / 100.***
What does this mean, besides the fact that the toxic soup has been pulled from my menu? Well, women with a low risk RS will receive little, if any, benefit from chemotherapy after surgery. Hmmm...

So. I asked, why I had to ask for the Oncotype DX test to be done?
So. I asked, why was it not offered to me as a matter of protocol, especially in light of the 180 in his medical recommendations?

The inscrutable Kato simply and calmly stated, because my tumor was so large. "You see," he says, "The 'problem' with Oncotype testing is that it usually does not test tumors greater than 5 cm." Hmmm...

So. I asked, does the size of my tumor give him reason to question my RS score and the subsequent determination? He said: "No, not at all." Hmmm...?

Sidebar: When all of the MedPros thought my tumor was no larger than 5 cm not one of them, and certainly not Kato, even hinted at the possibility of Oncotype testing -- they spoke only of chemo and radiation -- and their incredulity that I did not want to do either. Additionally, post-mastectomy, I spoke directly to Genomic Health, the lab that conducts the test. I wanted to confirm the criteria of the test and applicability to my situation. I was told I was a "fit" -- all 6.2 cm of me.

Walking out of Kato's office yesterday I felt like I had just "dodged the proverbial bullet." More so than after and since the mastectomy.

*************************************************************************************

Side Notes:

* Women with early-stage invasive breast cancer receive a standard risk assessment that includes their age, stage of the cancer, grade and size of the tumor. New, sophisticated tests, such as MammaPrint+ and Oncotype DX allow women with estrogen receptor-positive, node-negative tumors to also obtain a refined risk assessment that predicts their risk of recurrence and how much chemo will help. In my situation, prior and up until the results of my Oncotype DX test results each and every one of my MedPro squad were adamant that I commence chemo within one-month after my mastectomy. Their argument: my age (47) since "younger" women have a statistically higher risk for recurrence; and the size of my tumor (6.2 cm).

** "Red Devil" (a.k.a. "Red Death") refers to Doxorubicin; trade name Adriamycin; also known as hydroxydaunorubicin). This lovely pharmaceutical has a plethora of side-effects. Acute side-effects can include nausea, vomiting, and heart arrhythmias. It can also cause a decrease in white blood cells (making you highly susceptible to infections), as well as complete hair loss. When the cumulative dose of doxorubicin reaches 550 mg/m², the risks of developing cardiac side effects, including congestive heart failure, dilated cardiomyopathy and death, dramatically increase.

*** The Recurrence Score, a number between 0 and 100, also signifies the likelihood of metastatic recurrence within 10 years of the initial diagnosis. An RS of 17 or below is considered "low risk," meaning the breast cancer has a low chance of recurring. My RS essentially states that out of 100 women, statistically, 16 will have a metastatic recurrence within 10 years. Will I be one of the 16? Well, even if I am, chemo won't be any help -- and most importantly, would not have had any impact even if I had opted for it presently.

+   MammaPrint is the European version of the Oncotype DX test. The biggest difference, however, is that to conduct a MammaPrint the tumor tissue has to be "fresh off the surgical site." The only place in the U.S. that you can have a MammaPrint conducted is ... ta-da-ta-da-ta-da-da- dum ... PHOENIX. Why? Because T-Gen, HQ'd here in Phoenix (where my surgery was done), just recently bought the MammaPrint patent. And, according to Kato, T-Gen reps are wining and dining all the Arizona breast cancer surgeons. Guess my surgical oncologist (one of the top 3 in the Phoenix area) must have missed (or had too much of ) either the wine or dine. (BTW - I asked Kato why he thinks I was not presented with the MammaPrint as an option. He smiled, and said: (did you guess?) "Probably because my tumor was so large" (!!!) ) Hmmm...