Before You Donate
Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.
Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.
Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.
FINDING A BREAST SURGEON
Someone you have to trust! You'll be seeing a lot of each other!
I dedicate this page to Dr. Clark McCall, Chief of Surgery , and Dr. Brush, his colleague, now both deceased, who were caring, proficient surgeons at HFH Hospital in Detroit, Michigan, and gave me the courage to seek out expertise, knowing it could be found.
Having grown up in Michigan, and observing my family's relationship and confidence in a surgeon at Henry Ford Hospital, and knowing him as a youngster myself, the location of an excellent caring surgeon was important to me. I simply do not 'buy' 'a great surgeon, but no bedside manner.' In that case, I personally believe such a personality might consider academic medicine or research only. Later, in my education, I had the opportunity to 'scrub' in with some wonderfully, caring, exacting surgeons, so I didn't underestimate a surgeon's holistic value to my case, nor lightly consider my search.
Without hesitation, I would not have a biopsy without a breast surgeon's consultative recommendation as to approach, and type of biopsy, however in most states, and under current, 2000, FDA rules a surgeon may NOT perform a biopsy, without a radiologist present! Do not forget that! Its to your advantage, you should be included in the discussion of technique! But also remember that patient outcome is known to be in direct proportion to the number of breast procedures a surgeon has performed - so ASK and verify (its a good idea to tape your consultations, anyway, or take an advocate).
Selecting your surgeon is a personal journey. I was redoing this part of my journey, and it was a challenge! During my search I was living and breathing The Breast Cancer Companion by Kathy LaTour's (Click here to see this book) and meditating, praying, and trying to learn to breath deeply once again. I had a good attitude to get me through the daily crises, but I had to realize that a breast surgeon may be a part of my life for a long time - and I'm getting older every year!
I was under the care of a kindly, young, assertive internist and seeing doctors all the time to be carefully assessed before going into surgery again. My internist orchestrated all of this in an expert manner with her nurse phoning me within two hours of each conversation. Her office also took care of all the insurance company "referrals." My insurance company, at that time, Anthem/Amerihealth, had given me a Case Manager and she spurred me on and encouraged me at every turn. This may take time. The more time you spend on the process of finding the right surgeon the more comfortable you will be in the long run. This time is well spent.
Begin by reviewing the earlier pages, too. Remember, my first time around I didn't do it, and in a seven-day period. I had the first visit, decided on one of the surgical options I was given, but was asked to "rethink" my decision (they actually meant "our decisions") five times. This occurred even after the other surgical option was actually performed (not MY choice). No nodes were looked at, and my case warranted repeating the surgery before any other treatment could even begin! I was going nuts with worry, not to mention my children, my friends, and observing medical professionals who were friends! My immune and nervous systems were already negatively impacted. This is what I'd do for one of my daughters, or a granddaughter, or for you!
From the Biopsy page I'm repeating a paragraph, but re-read that part about the surgeon: Don’t be fooled by ‘great bedside manner.’ Nor, accept a ‘strictly technological cold faced- tired-of-your-questions’ demeanor. Listen to your heart…you know your body and you will develop a feeling for what is right for you. It may take you a lot of time, but you will make the right decision.
Call your insurance company, or provider to find out your options. Check with your internist or family doctor or primary care physician (be sure to go through them for insurance - mine was superb!), The American Cancer Society, a breast cancer resource center, nurses on a hospital oncology floor, an oncology (group of doctors who specialize in cancer) practice, or a plastic surgeon who is a woman, for names of board-certified surgeons who just perform breast surgery (they'll know the best ones).
I went to the local breast cancer resource center, they had a short list of breast surgeons, and I got that. I talked to everyone I could about the surgeon I'd already seen. Other doctors as well as lay people had never heard of him, except one - even some physicians wives. Yet, he was on their board, and they never mentioned him. Gulp!
At this time I was very ill, but I kept a page in my cancer notebook with doctors names getting a check each time I heard them recommended. I telephoned the local and regional oncology practices. I "hit" the Internet, and looked for names of oncologists and published researchers through the American Cancer Society, National Cancer Institute, National Institutes of Health, Sloan Kettering, Mayo Clinic, and M.D. Anderson sites ( Click here). I contacted those oncologists listed on their sites or their departments. One surgeon's name kept being repeated. I called the ones on my list with the highest number of check marks to get a feeling for their office "personality" and make an appointment if they passed the first phone call (a lot didn't!). I prayed a LOT.
That was very interesting, I must say, because the one I selected was then the only experienced female breast surgeon in Austin and had varied and exceptional training compared to the rest of them. There were many very unhappy roosters: She was a candidate for surgical chief at one of the hospitals.
Dr. Nelson (who's diligence led me to the hospital and pathologists who diagnosed my actual cell disease) was given a very difficult time by me. I knew she was the best surgeon I had met as soon as she related the basis for her decision from a nationally acceptable standard based on the size of my cell and sites. She was very soft spoken but did not mince any words (nor did she after the mastectomy!!).
The first thing I noticed when I visited the surgeon's office was that it looked clean, and professional. It was not filled with waiting patients, and the décor was not distracting, or 'cute.' I was seen on time and the receptionist knew my name (!) when I walked in the door and advised me that the doctor would be right with me, when I signed in (I was early).
What I remember about that appointment was that I had all of my records and mammograms with me (a friend waited for three days at the previous hospital's medical records department to hand carry them to me).
I remember that this surgeon kindly but confidently told me what was needed and that it had to be done quickly. She quoted a standard (Van Nuy's Index) that I was above, concerning my particular cell type, phase, size of sites, and that her surgery would include node excision—and it might compromise my right arm. But, she had a no nonsense attitude and was affirming of my impression of what I'd been through before. We talked about "reconstruction," and I told her I wanted to wait but did want to see a plastic surgeon because tissue could be biopsied on the opposite breast and I wanted that side reduced. She agreed with me (I also had a letter from the doctor who was caring for me from an auto accident). I remember I told her to go ahead and schedule the surgery and her office immediately proceeded to gather medical records and doctors names. It was obvious she had a well run office, too. I think I wanted to stay there—spend the night!
I was still in denial and had been very ill on top of it and was still in pulmonary care. The fact that I had cancer kept me zoned out. I know that I wasn't feeling anything specific just moving on to get things done. The surgeon referred me to an oncologist, in advance. I was still unsure of this physician. In fact, I was terrified that I would experience what I had before—no contact, no answers, no help. So were my friends and family. My friends were about nuts with worry. They'd never seen me so ill. One friend suggested that I not write out goals, right now. He said, "just write down what you want, and then how to get what you want." Ah ha! It worked.
I faxed this surgeon a letter listing all of my questions that I could not ask her face to face, and sent a copy to the plastic surgeon. The breast surgeon telephoned me immediately and went over each line of my letter, and my concerns very thoroughly and patiently. She must have thought I was bloomin' out of my mind—I was.
I decided on my surgeon because breast surgery was her practice, as opposed to the other surgeons. She cited a national standard and recent research I had viewed on the Internet, as well as presented a very unbiased opinion of the Sentinel node biopsy (I'd learned ahead of time that she was the one surgeon doing that in my city, where previously I'd been told I'd have to "go to LA for it."). By this time, I'd met the plastic surgeon and the oncologist. They had high praise for her, but more importantly, I was impressed with them. Things jelled.
Had I NOT had some of my axillary nodes excised no one would ever have known that I had invasive tumor in my lymph until a couple of years from now, and too late—it would have spread to my bones, lungs, liver, spine &/or brain! This surgeon worked closely with the pathologist, and NIH's chief of surgical pathology, while the second opinion was still "out" and waiting, but there was no question on the first reading, and Dr. Wells, the hospital pathologist did send my tissues and slides to other pathologists, as well.
We must let our Teams know that we are aware that breast cancer is multi-centric, and that early diagnosis right now is the only key to survival. That means its a viscous type of malignancy that spreads, and most often there is another malignancy in the same or opposite breast, but yet undetected.
When our Team members know we are aware of this there's much more open communication because no one is holding back to wait and judge how patients will cope with information.
My search and the angst it caused was well worth the time and effort. I respect this surgeon as a competent, ethical, intellectually curious physician and individual. I'm comfortable letting her know "where" I am, emotionally, and physically, and I'm proud of her, too. Now, we can both cry together.
This surgeon has operated on me a total of four time in a nine month period, including a second mastectomy at the end of the January,1999. When my port-a-cath became no longer needed this surgeon removed it from my chest (my Oncology-infusion nurse wanted it left in 'forever!). Now I think she was right because I've had to more trips to the OR and it was virtually impossible to get a line in because both of my arms are "gone" vein-wise.
I would caution that you make certain that your surgeon does not become overly committed to hospitals, and/or patient load. This can create a conflict of interest and loss of objectivity in surgical matters eventually affecting their patients.
To reach Joane the designer or me, just click above.
Reviewed: Monday, December 05, 2005