How appropriate!

ONE YEAR CANCERVERSARY!

Today marks my one year of survivorship. I almost can't believe it was a year ago today that I learned I had breast cancer. And what a year it has been!

I've lost
my breasts
my hair
a few friends along the way
beauty
mental clarity
so much

I've gained
humility
compassion
weight
tremendous respect for my parents
true knowledge of who my friends are
new friends
a sisterhood with other survivors
scars
a realization of how resilient I truly am
perspective

I have also decided that I am not going to do radiation afterall. After much thought and discussion with ALL of my doctors, I am comfortable with this decision. My half hour conversation with Dr. DerHagopian two nights ago gave me a great deal of comfort and peace. He wasn't the least bit surprised that 2 rads oncologists would recommend radiation, even though they wouldn't commit to a strong recommendation for it. His comment was, "Look, radiation oncologists will want to give you radiation just as medical oncologists will want to give you chemo and we surgeons will want to open you up. We are all biased by our respective trades." I told him I was struggling to understand why I should be in any more of a "grey area" for radiation than people who have positive lymph nodes but are still not subject to rads. The reason I was given for being in this grey area is because I apparently had 4 areas of foci for lymphatic invasion seen where the primary tumors were. Dr. D explained however that none of these areas were seen distantly from the primary site and my clean margins are very promising. He said he did not "slice through" any areas where cancer cells appeared close to the edges. He also said the only way one could have positive lymph nodes in the first place is if one ALSO had lymphatic invasion at some point. In other words, it is ONLY through the lymphatic channels cancer cells can travel to reach and deposit in the lymph nodes. Therefore, if the radiation guidelines call for at least 4 positive lymph nodes to require radiation and I did NOT even have a positive sentinel node, I should be fine.

Dr. D also pointed out some other cons with radiation that I had not considered. For one, there is always radiation scatter to the heart which could pose risks of cardiac damage. (Recall that in my case the tumors were in my left breast close to the chest wall area.) Moreover, I am getting Herceptin infusions once every 3 weeks which also carries cardiac toxicity risks although this would only be temporary. It is unknown what permanent effects radiation scatter may have on women who are also getting Herceptin at the same time. Radiation also minimally increases the chances of developing pneumonitis in the lungs. In fact, Dr. Samuels, the rads oncologist I consulted, disclosed that I would most certainly be subject to developing scar tissue in 10% of my lung tissue as a result of radiation. It would show up on any future x-rays, but that it would not impair my breathing in any way. Dr. D also discussed how rads can cause an increased risk of arm edema or lymphedema -- an accumulation of lymph fluid in the soft tissues of the arm which can lead to substantial functional impairment. Finally, there would be the effect on my reconstruction, possibly impeding a good cosmetic result. Like I said before, the odds of a local recurrence in my particular instance are small and I am comfortable taking this low level risk, especially in view of the hormonal treatment I am continuing (which is most important for the type of breast cancer I had).

I recognize all of this medical lingo can be rather confusing. I know for a fact that it confuses the hell out of my poor father ... he just wants the bottomline. After discussing my consultations with him earlier this week, he attempted to boil it down to simple terms he could understand. He asked me pointedly if having breast cancer and then not doing radiation is an automatic death sentence. I tried to assure him that there are LOTS of breast cancer survivors who battled this in the 1970's when the types of treatment available today weren't even around. I provided the example of Betty Ford who I know had a mastectomy, but I'm not sure if her treatment plan included anything else. The woman is close to 90 years old and is still going strong. My dad said, "Yes, but that's only ONE example."

So Daddy, here is an extensive list of other famous breast cancer survivors ... just for you! Someone posted this in a thread at YSC. These are suvivors who are still alive. It is sad to see so many women who have had to stare down this dreadful beast of a disease, but nevertheless encouraging to see a long list of old time survivors! Please note you may also see some men who appear on this list. It is no mistake ... no typos. Yes, it's true that even MEN are susceptible to developing breast cancer. The risk is relatively low, but it does still occur.

Elizabeth Agassi, mother of American tennis champion Andre Agassi
Tami Agassi, author and sister of American tennis champion Andre Agassi
Barbara Allen, American politician, Kansas State Senator
Anastacia, American popular singer
Cheryl Aranda, American singer/songwriter
Dame Eileen Atkins, esteemed British actress
Carol Martineau Baldwin, mother of American actors Daniel, Stephen, William, and Alec Baldwin, and foundress of the Carol M. Baldwin Breast Care Center of the University Hospital and Medical Center at Stony Brook
Kaye Ballard, American actress
Brigitte Bardot, former French actress and current animal rights activist
Allyce Beasley, American TV/comedic actress
Jami Bernard, American author and film critic for the New York Daily News
Aisha Bicknell, daughter of British actress Rita Tushingham
Shirley Temple Black, famous Oscar-winning American former child star & former U.S. Ambassador to Ghana and Czechoslovakia
Raelene Boyle, Australian athlete
Rhona Brankin, British politician, Member of the Scottish Parliament
Eileen Brennan, American actress
Nancy Brinker, American founder of the Susan G. Komen for the Cure
Edward Brooke, African-American former U.S. Senator
Edna Campbell, African-American professional basketball star
Robin Carnahan, American politician, Missouri Secretary of State
Diahann Carroll, African-American actress, singer
Pattie Daly Caruso, mother of American television personality Carson Daly
Beth Nielsen Chapman, American singer-songwriter
Mary Jo Codey, former First Lady of New Jersey, school teacher and wife of former Governor of New Jersey Richard Codey
Sheryl Crow, American singer/musician
Fran Dalessandro, a 2003 Cancer Research and Treatment Fund Survivors Hall of Fame inductee
Margaret Daley, wife of American politician Chicago, Illinois Mayor Richard M. Daley
Marina Dalglish, founder of the Marina Dalglish Appeal and wife of former British international football player Kenny Dalglish
Jo Ann Davis, U.S. Representative from the State of Virginia
Ruby Dee, African-American actress
Betty DeGeneres, American author and mother of American actress and TV host Ellen DeGeneres
Elisabeth DelPadre, mother of The View TV talk show host Elisabeth Hasselbeck; Hasselbeck's two grandmothers and one aunt are also breast cancer survivors
Simone de Oliveira, Portuguese actress/singer
Diana Dill, British-American actress; ex-wife of American actor Kirk Douglas; mother of American actor Michael Douglas
Kelly Jo Dowd, American mother of 13-year-old American golf protege, Dakoda Dowd; cancer has metastasized
Susan Duncan, Australian author
Elizabeth Anania Edwards, American lawyer; wife of former U.S. Senator from North Carolina John Edwards
Julie Ege, Norwegian actress
Barbara Ehrenreich, American author/ethicist
Jill Eikenberry, American actress and wife of American actor Michael Tucker
Linda Ellerbee, American TV journalist
Melissa Etheridge, American singer and prominent lesbian

Marianne Faithfull, British singer from the 1960s
Edie Falco, American stage and TV actress
Deanna Favre, creator of a breast cancer foundation and wife of American football quarterback Brett Favre
Caitlin Flanagan, American magazine writer, editor and book author
Peggy Fleming, American Olympic champion figure skater
Betty Ford, former U.S. First Lady
Wenche Foss, Norwegian actress
Maria Friedman, British actress
France Gall, French singer and wife of late French composer Michel Berger
Nikki Giovanni, African-American professor and poet
Liza Goddard, British actress
Ernie Green, African-American former professional Cleveland Browns football player
Christine Gregoire, American politician; current Governor of Washington State
Nanci Griffith, American singer/songwriter
Lucy Grijalva, writer of romance novels
Shelly Hamlin, American professional golfer
Jane Hamsher, American film producer, author and liberal blogger
Sheila Hancock, British actress and wife of the late British actor John Thaw
Julie Harris, legendary American stage actress
Heidi Heitkamp, North Dakota politician and lawyer
Lydia Clarke Heston, former actress; wife of American actor Charlton Heston
Darby Hickson, graphics designer; 2nd wife of Deputy White House Chief of Staff Karl Rove
Amy Pasternack Hughes, mother of Sarah Hughes and Emily Hughes
Marsha Hunt, African-American singer, novelist, breast cancer activist and mother of Mick Jagger's first child, Karis Jagger
Laura Ingraham, American radio host/pundit
Kate Jackson, American actress
Kim Jagd, American assistant coach of the UCLA Bruins women's volleyball team and former UCLA (University of California, Los Angeles) volleyball player
Ann Jillian, American actress, entertainer
Betsey Johnson, American fashion designer
Melanie Johnson, former British Member of Parliament
Jennifer Jones, American Oscar-winning star actress
Susan Ryan Jordan, mother of American actress Meg Ryan; Jordan is a 27-year survivor
Barbara Joss, Australian writer
Susan Kadis, Canadian politician in the Canadian House of Commons
Phyllis Kagan, mother of CNN television news show host Daryn Kagan
Sonia Kashuk, makeup artist/cosmetics businesswoman (as per October 30, 2006 People Magazine); had lumpectomy and later decided on a prophylactic bilateral mastectomy
Joan Kennedy, former wife of Senator Edward M. Kennedy (Massachusetts); had surgery and is continuing treatment
Linda Kerr, mother of American golfer Cristie Kerr who plays on the LPGA Tour
Janelle Kidman, mother of Australian actress Nicole Kidman
Becky Krimstein, American video and film producer and breast cancer activist
Barbara Krueger, mother of American TV personality Kandace Krueger
RuthAnn Lobo, American author and mother of American professional basketball star Rebecca Lobo
Sondra Locke, American actress
Adamari López, Puerto Rican actress; diagnosed in April 2005
Geralyn Lucas, American journalist, television producer, and writer
Jennifer Lyon, American contestant on the CBS reality television series Survivor: Palau
Marisa Acocella Marchetto, American writer, cartoonist and memoirist
Matuschka, a/k/a Joanne Matuschka, American fine art photographer and breast cancer activist
Rue McClanahan, American TV/stage actress
Doris McCormack, mother of Canadian actor Eric McCormack
Jane McGrath, wife of Australian cricket champion Glenn McGrath
Judy Eason McIntyre, African-American politician - Oklahoma State Senator
Amanda Mealing, British actress
Tucker L. Melancon, male United States District Judge, Western District of Louisiana, 5th Circuit since 1994
Wendy Mesley, Canadian host and reporter for CBC Television
Kylie Minogue, Australian singer, actress
Hala Moddelmog, American president and CEO of Susan G. Komen for the Cure
Diana Moran, British model, fitness expert and journalist
Shelley Morrison, American actress; currently battling breast cancer, also battled lung cancer
Sharon Murphy, mother of American actress Brittany Murphy
Jenni Murray, British BBC presenter
Janet Napolitano, American politician, Governor of Arizona
Kitten Natividad, Mexican actress,
Jocelyn Newman, former Senator from the Australian Parliament for Tasmania
Phyllis Newman, American TV and Broadway actress/singer; widow of American playwright Adolph Green
Olivia Newton-John, UK/Australian singer/actress
Jerri Nielsen, American physician who famously treated herself for breast cancer while stuck in the South Pole after discovering a lump on her breast
Cynthia Nixon, American stage and TV actress who played Miranda on "Sex and the City"
Linda Nolan, Irish-born singer, actress and former member of the 1970s pop band, The Nolans
Sandra Day O'Connor, first female U.S. Supreme Court Justice
Claudia Price, inflammatory breast cancer survivor and mother of African-American R&B and soul singer Kelly Price
Nancy Priddy, mother of American actress Christina Applegate
Dina Rabinovitch, British journalist and writer
Judy Rankin, American Hall of Fame professional golfer
Betsy Rawls, American Hall of Fame professional golfer
Claire Rayner, British journalist
Nancy Reagan, former U.S. First Lady
Lynn Redgrave, Oscar nominated British-American actress
M. Jodi Rell, American politician, Governor of Connecticut
Kathleen Reynolds, wife of former Irish taoiseach, Albert Reynolds
Wendy Richard, British actress
Cokie Roberts, American journalist, ABC News
Dede Robertson, wife of American Christian evangelist Pat Robertson
Robin Robertson, American journalist, Good Morning America
Margaretta Fitler Murphy Rockefeller a/k/a Happy Rockefeller, American socialite and wife of the late former N.Y. Governor and U.S. Vice President Nelson Rockefeller
Betty Rollin, American author, retired TV correspondent
Richard Roundtree, male African-American actor
Linda Saarloos, mother of Oakland Athletics baseball pitcher, Kirk Saarloos
Lynn Sherr, American writer and TV correspondent for ABC News
Debra Shipley, British politician - Labour Party member of Parliament
Claire Shulman, former Borough President of Queens, New York City
M. Kay Siblani, Arab-American co-founder and executive editor of The Arab American News
Jean Simmons, British-born U.S. actress
Carly Simon, American singer
Jaclyn Smith, American actress, businesswoman
Suzanne Somers, American actress
Stephanie Spielman, wife of American NFL linebacker Chris Spielman
Karin Stanford, African-American professor and writer
Janet Stark, mother of American former tennis champion Jonathan Stark
Koo Stark, American soft-porn actress who had a controversial relationship with Prince Andrew of the United Kingdom
Gloria Steinem, American feminist activist; stepmother of British actor Christian Bale
Helen Stewart, wife of former British Formula One racing champion Jackie Stewart
Lynne Stewart, American lawyer/activist
Gloria Stuart, legendary American actress
Sarah Susanka, English architect and author
Ruth Ann Swenson, American soprano opera star
Jane Tomlinson, British cancer fundraiser 1st September 2006, completed 4200 mile cycle journey across the USA
Jools Topp, New Zealand folk singer, one of the Topp Twins
Linda Tripp, former U.S. Government federal employee and Monica Lewinsky's former confidante
Dawn Upshaw, American soprano diva
Ann Veneman, former head of the U.S. Dept. of Agriculture
Suzyn Waldman, American sports commentator
Marcia Wallace, American comedic actress
Jenna Welch, mother of American First Lady Laura Bush
Mickey Wright, American Hall of Fame professional golfer
Kay Yow, American head coach of the women's basketball team at North Carolina State University

Got naked for the 2nd rads oncologist today

Well, not ALL the way naked. It's all become so clinical now the way I remove my clothes to show people my breasts (and I don't mean just for my doctors). I have a few pictures on my digital camera that I took of my final tissue expansion approximately a month ago. I keep forgetting to delete them now that I've downloaded them to a safe file on my personal computer. So everytime friends pick up my camera to click through my photos, I run the risk of having them view shots, from all different angles, of my naked torso. It's interesting that my breasts no longer feel like a true part of me. Perhaps that's why I think nothing of having people view them or feel them for that matter. In fact, I allowed my next door neighbor to touch them last weekend when I ran into her outside and she inquired if I had been ill recently. All those flowers that were being delivered to her door while I may have been away from home must have given her some clue. I flash my boobs now for anyone who's curious, but I still guard the photos of my old boobs as if they are sacred. Well, they are ... to me. ;-)

Today I consulted with Dr. Judith Samuels, a radiation oncologist at Mount Sinai Hospital in Miami. She was actually my second opinion, following my first consult with Dr. Ana Botero at Memorial Regional Hospital in Hollywood about two weeks ago. In a nutshell, Dr. Botero said that although there is no ONE compelling factor in my case to warrant radiation, she would recommend that I do it because of my age (I'm young, have my whole life ahead of me, ... yadda, yadda, yadda) and it would just be one more weapon in my arsenal to mitigate the chances of a local recurrence to the breast. She did agree that I don't fall within the normal guidelines for radiation. In other words, I did not have a tumor greater than 5 cm and I did not have more than 4 positive lymph nodes. Moreover, she agreed that I have been "extremely aggressive" already -- insofar as I have done chemo, had a mastectomy, and continue to treat with Herceptin infusions (until Feb. 2008) and Tamoxifen pills for the next few years.

I inquired where she would radiate if all the breast tissue was now gone. She said she would do a standard treatment, focusing the radiation beams to the chestwall, axillary (under the armpit), subclavical (near the collarbone) areas, as well as the site of the mastectomy incisions since these are the areas where a local recurrence would typically occur. She seemed convincing enough when she said that the lower level dose of radiation I would endure over a 5 week period would not significantly interfere with my reconstruction. Dr. Botero said she and her team do an excellent job of monitoring the skin and could provide for a few days off if it appeared the skin was beginning to burn or blister. She said I might be prone to some tightness of the skin, but that I would not be at absolute risk for capsular contracture (where the scar or capsule around an implant begins to tighten causing severe pain). I raised an eyebrow to this however. I know from reading quite a few anecdotal posts on my online support group that most women who were subject to radiation following mastectomy often times had to take muscle from their back (a lat flap) to cover their implant. Dr. Botero seemed puzzled when I brought this to her attention, almost as if she had never heard of a latissimus dorsi flap procedure. Hmm? Red flag there.

Dr. Botero was very thorough and patient with her time, spending a little over an hour discussing my case and all the factors she considered. The problem, she said (as did Dr. Samuels today), is there is no good, RECENT data concerning women who have chosen to forego radiation for lymphatic invasion who are ALSO doing systemic treatments such as Herceptin and Tamoxifen. The current radiation guidelines stem from a retrospective study conducted in 2001, using data on women during the 1990's before Herceptin (a wonder drug for reducing the risk of recurrence) was even around. Dr. Botero mentioned that although the current guidelines use 5 cm as a benchmark, she is more inclined to use 3 cm as a determinant. Although my tumor was no greater than 3 cm, the entire area involved before chemo including DCIS (i.e., precancerous lesions) was 4.2 cm as confirmed by an early MRI. She will not concern herself with how much the tumor may have shrunk during chemo; she is only concerned with what existed in the first place. For all these reasons, Dr. Botero said she would recommend radiation, but she would not STRONGLY recommend it. It is ultimately up to me.

I chose to see Dr. Samuels today because I had heard so many wonderful things about her -- that she is bright, thorough, and sensitive to a woman's reconstruction concerns. Furthermore, she is part of a comprehensive cancer center where most cases are brought before an entire tumor board and I would have the added benefit of hearing the opinions of any other doctors who differed from her own. Dr. Samuels is a friendly, compassionate, supportive woman who seemed to understand how much I've been struggling with this issue. She reviewed my entire medical file and films before opining that there is nothing about my situation that makes a compelling case for radiation. However, she feels that my age and the evidence of lymphatic invasion in the breast tissue that was removed makes my case a bit worrisome.

Dr. Samuels was also respectful of Dr. Botero's overall assessment, but stated that she wouldn't be as "cavalier" regarding the potential effects radiation could yield. For instance, she said even in women who have done breast augmentation for purely cosmetic reasons, they stand a 50% chance of capsular contraction. Most assuredly, radiation will increase this risk somewhat. Also, she does believe I would have some noticeable difference in appearance between the radiated side and the non-radiated side. Furthermore, in Asian and black women, the skin has a greater chance of appearing permanently darker on the radiated side ... most likely the result of greater melanin. She did not sugarcoat this aspect, although she said people can differ as to what appears to look good or not. There's no question that I want to do everything to save my life, but certain things I feel have to be weighted against other aspects that are still important to me at this stage of my life. I am a single girl and I make no apologies for having these cosmetic concerns in view of everything else I have already done and put at risk in an effort to be aggressive about this.

To help me make a better informed decision, Dr. Samuels is going to contact the pathologist who reviewed my breast tissue slides following surgery to determine how extensive the lymphatic invasion actually was. Apparently, there are roughly 19 slides that were reviewed. Dr. Samuels said if there were just a few cells contained on 1 slide vs. all 19, that may help give me some peace of mind about my almost made up decision to forego rads. She feels as I do that Tamoxifen and Herceptin are 2 very aggressive, systemic treatments that would likely take care of any remaining cancer cells that could be looming in the subcutaneous tissue of my breast. It's all a crap shoot (pun intended), but I feel the odds are more or less in my overall favor. I am going with my gut on this one, but in the meantime, I await Dr. Samuel's call the end of this week.

SIDEBAR: I e-mailed my surgeon, Dr. DerHagopian, after my first consultation just to keep him apprised of the situation. He usually picks up the phone to give me feedback, since he's someone more akin to Two Finger Tony when he types. I guess it may have been too late to call me, so this is what he wrote back, "i prob. would not radiate, bob d." Now I have great respect for him and his opinions, but I couldn't help chuckling to myself about what HE would do with his breasts.