Questions...

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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.

Awarenes

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October is Breast Cancer Awareness Month and the Pink Ribbons are flying!

What does that really mean ... AWARENESS???????

Before I was diagnosed with Invasive Lobular Carcinoma, I was aware of the prevalence of breast cancer. I knew it was a disease that struck mostly post menopausal women. I was aware that women who have family histories; who smoked; who took oral contraceptives for prolonged periods of time were more likely to be stricken with breast cancer. I was aware of mammograms and lumps and lumpectomies and mastectomies. I was aware of the existence of radiation and chemotherapy treatments.

I was aware of our local news station and its "Buddy Check 12" campaign. I was aware of the Pink Ribbon campaigns. I was aware that every October there was a hub-bub about the Susan B. Komen Race for the Cure. I was so aware that for the last 15 years I ran the Race for the Cure; ironically shaving off up to 8 minutes in my pace time each year. (As it turns out, I guess I wasn't running fast enough!!!!)

It wasn't until I was blind-sided with a diagnosis of breast cancer this summer that I became aware of the breadth of my ignorance. There was, and still is, so much that I did not know about the disease and its treatment. And, none of the information I received over the last 15 years of my "pink" involvement ever even hinted at the depths of my naivete.

For example . . .

I did not know there were myriad of causes of breast cancer - the majority being environmental
I did not know that women without genetic predispositions could get breast cancer
I did not know that women who did not live a high-risk lifestyle could develop breast cancer
I did not know that there were subsets to breast cancer (ductal, lobular, inflammatory and Paget's Disease)
I did not know that as a pre-menopausal woman in good health I could develop breast cancer
I did not know about sentinel node biopsies
I did not know about drainage tubes ("d-bombs")
I did not know about tram flaps; or that as a 100+/- lb person I am not a candidate for one (And thank the Creator for that one - not a procedure I would have wanted!)
I did not know about the long term effects of chemotherapy
I did not know about Adriamycin (aka "Red Devil")
I did not know about Tamoxifen (or that outside of the U.S. it is listed as a cancer-causing carcinogen)
I did not know about Herceptin and Aromatase
I did not know that the medical community treated pre-menopausal women differently than post menopausal women
I did not know about Oncotype DX and MammaPrint tests for chemo efficacy
I did not know about how a cancer is "staged"
I did not know that mammograms are not a reliable or effective way to early-detect Invasive Lobular Carcinoma
I did not know that a Vitamin D deficiency can be a contributing cause in the development of breast cancer
I did not know how key Vitamin C is in preventing the occurrence and recurrence of breast cancer
I did not know that a build up estrogen in the body is toxic.
I did not know that the only way the body effectively disposes of unneeded estrogen is through daily waste elimination
I did not know about E-cadherin and protein tests and saliva tests and hormonal balancing
I did not know about the vast discrepancies in how breast cancer is approached and treated in the U.S. as compared to Europe - and that stateside we are not on the higher road

and so it goes on, and on, and on . . . . AND

I did not know what an insidious and pervasive industry that breast cancer has generated in the U.S.

I did not know that the med-pros really do not have a "CURE" for breast cancer, but rather a "PROTOCOL" - that they are vociferous in the application of their established protocol; that the protocol has not changed much in 50 years; and that despite the protocol women are still dying - at times as a result of the protocol.

I did not know that even though 100s of millions are raised for research, awareness, marketing and merchandising that we are still no closer to a cure.

I did not know that some of the pharmaceutical companies that produce & distribute cancer treatment drugs consciously include cancer-causing carcinogens in the household products and foods we consume.


I did not know that I would need to become my own "lay expert" in order to earn a voice in the discussion regarding my own health and treatment.

October is Breast Cancer Awareness Month. And, I am a little more aware this October of 2009 than I have been in all my previous years. I am also excruciatingly aware that my new found knowledge and the continuing pursuit of knowledge has nothing to do with the flying of little Pink Ribbons!

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

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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.

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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...