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.