Thursday, May 26, 2011

Recent Interview for

5 Amazing women -- all cancer survivors

Real Life
Cancer Stories

by Kori Ellis

We had the opportunity to interview five amazing women from various parts of the country and walks of life. No matter how different these women are, they have one major thing in common – they are all cancer survivors.

Gina MaisanoMeet Gina

Gina Maisano is a two-time breast cancer survivor, founder of the "No Surrender Breast Cancer" foundation and author of Intimacy after Breast Cancer.
I was a chef/caterer in Locust Valley, New York. I had a wonderful gourmet shop and catered off premise parties from 10 people at a private home to 1,000 people on a polo field.

The diagnosis

I was very lucky to have a doctor who believed in early detection. He had me get my first baseline mammogram at age 35. At age 39, a small shadow was found and that was my first cancer. It was invasive, ductal, triple negative breast cancer. That means it was not responsive to estrogen and it is a more aggressive type of breast cancer.

The treatment

I had a lumpectomy, six months of CMF chemotherapy followed by radiation. Six years later, I found another cancer while doing a breast self-exam and that was in the opposite breast. This time it was lobular, and responsive to estrogen. Because of the location of this cancer, under the nipple, lumpectomy was not possible. I chose a bilateral mastectomy followed by tissue expander reconstruction that later on were exchanged for silicone implants. I underwent nine months of chemotherapy, Adriamycin, Abraxane and Xeloda, followed by monthly Lupron injections to put me into menopause so I could take Femara, an anti-estrogen drug that helps prevent breast cancer recurrence. I then had radiation to the chest, underarm and collarbone area because this cancer spread to four of my lymph nodes.
Because of all the radiation I had, my skin did not do very well with the silicone implants, so I had a latissimus dorsi flap reconstruction. That takes the latissimus dorsi muscle from the back and puts it where the breasts were. An implant is also used. Because there is a new blood supply, the skin no longer had problems because of the radiation damage.

Lost friends

quotation mark openEven though it may seem like I have been through a lot, the most difficult part of the ordeal has been the friends I have lost.quotation mark close
Even though it may seem like I have been through a lot, the most difficult part of the ordeal has been the friends I have lost. I started my foundation, the No Surrender Breast Cancer Foundation, to help women through their breast cancer. We have an online support forum where women can talk to each other to share their experiences and find a safe place to say whatever they want. Because it is by survivor for survivor, women can express the things that they cannot say to their families, and members of the forum truly understand because they have been through it themselves. I have become very close to these women and we have lost some beloved members over the years and it is very hard. Especially when their lives could have been saved if their cancer had been found earlier. That is why our biggest program is the Before Forty Initiative. We strongly encourage all women to get their baseline mammogram at age 35 and not at the age of 40, because so many cancers can be found at their earliest, most curable stage if they don't wait.

Advice for others

If a woman has just been diagnosed, I hope she will come to our website, There she will find, in English, not doctor-speak, everything that she needs to know to help her fight her cancer. Then she can jump over to the support forum and talk to her fellow sisters. What she will discover is that this journey has a beginning, a middle and an end. The beginning is terror-filled because you don't know what is happening to you and how you will ever make it through. The middle is enduring the treatments and surgeries. And the end, is when you are done with all of the doctors and treatments and the rest of your life begins. That can be so very daunting and overwhelming, which is why I wrote Intimacy after Breast Cancer -- not only does it help you regain your intimate life, but it helps your reclaim your entire life post-cancer. It helps a woman heal both psychologically and physically.
You really will get through this and you will get your life back -- maybe even a better life.

interview by Kori Ellis for

Save the Date: October 1, 2011 2nd Annual There & Back: A Celebration of Survival

Save the date! This year's event will be very, very special.  The worlds of medicine, fashion and history will combine to celebrate life and survival.

There & Back: A Celebration of Survival will be held at Christ's Church & Parish Hall in Oyster Bay, Teddy Roosevelt's church. We will tribute his eldest daughter, Alice Roosevelt Longworth. She was a fashion icon, writer, rebel and breast cancer survivor. We will trace breast cancer over the years through the fashions of famous breast cancer survivors including Alice, Abigail Adams Smith, Bette Davis, Ingrid Bergman, Myrna Loy, Greta Garbo, Hattie McDaniel, Brigitte Bardot, Julia Child and many, many more. The Warrior Angel Survivor Models will return to model the vintage fashions.

We will chronicle the advances in breast cancer treatment and surgery over the years and our Honoree is unquestionably the most talented, compassionate and well respected reconstructive surgeon in the United States, Dr. Ron Israeli.

Set aside this day now so you won't miss the music, the champagne, the fashion, the love and the celebration of survival- No Surrender Style!!!!

Sunday, May 22, 2011

New Hope for Patients Who Become Drug Resistant

Scientists find new drug target in breast cancer

Researchers have identified a new protein involved in the development of drug resistance in breast cancer which could be a target for new treatments, they report today in the journal Nature Medicine.

In a mouse model of breast cancer, blocking production of the protein using genetic techniques caused tumours to shrink. The scientists are now looking for new drugs which could achieve a similar effect.

Breast cancer is the most common cancer in the UK, affecting about 46,000 women each year. More than two thirds of breast tumours contain oestrogen receptors, meaning that they require the hormone oestrogen to grow and they can be treated with anti-oestrogen drugs such as tamoxifen. However, many patients develop resistance to these treatments so that the drugs eventually cease to be effective.

In today's study, researchers from Imperial College London found that blocking a protein called LMTK3 in human cancer cells that were resistant to tamoxifen made the cells more responsive to the drug. In a mouse model of the disease, using genetic techniques to block the production of LMTK3 led to a significant decrease in the size of breast tumours.

The researchers also measured levels of LMTK3 in tissue samples taken from women with breast cancer. They found that women who had higher levels of LMTK3 in their tumours tended to live less long and were less likely to respond to hormone therapy. In addition, they found that particular mutations in the gene coding for LMTK3 also correlated with how long a patient would survive.

"Anti-oestrogen drugs have been very successful at allowing women with breast cancer to live longer, but resistance to these drugs is a common problem," said Professor Justin Stebbing, from the Department of Surgery and Cancer at Imperial College London, the study's senior author. "Our results suggest that the action of LMTK3 on the oestrogen receptor has a crucial role in the development of drug resistance.

"We're now looking for drugs that can block the effect of LMTK3, which we could hopefully give to patients to prevent them from becoming resistant to hormone therapy. It will probably take at least five to ten years to develop new treatments that are safe to be used in humans."

Evidence from the laboratory suggests that resistance to hormone therapy might occur when the oestrogen receptor is modified by enzymes called kinases. The team identified LMTK3 as a potential treatment target by screening for kinases that affect how cancer cells respond to oestrogen.

The researchers also compared DNA sequences in the gene coding for LMTK3 in humans and chimpanzees, because chimpanzees are not susceptible to oestrogen receptor positive breast cancer. They found that substantial differences have evolved in these sequences between the two species.
"It's quite intriguing that humans and chimps have evolved these differences in the LMTK3 gene, since related genes are very similar between the two species," said Dr Georgios Giamas, who designed and led the study, from the Department of Surgery and Cancer at Imperial College London.

"We could speculate that evolutionary changes in this gene might have given humans some unknown advantage, but also have made us more susceptible to breast cancer."

For More Information, Contact: Contact: Sam Wong
Imperial College London

Thursday, May 19, 2011

Is Your Chemo Working? A New Test

A Genomic Predictor of Response and Survival Following Taxane-Anthracycline Chemotherapy for Invasive Breast Cancer

JAMA. 2011 May 11;305(18):1873-1881, C Hatzis, L Pusztai, V Valero, DJ Booser, L Esserman, A Lluch, T Vidaurre, F Holmes, E Souchon, H Wang, M Martin, J Cotrina, H Gomez, R Hubbard, JI Chaco´n, J Ferrer-Lozano, R Dyer, M Buxton, Y Gong, Y Wu, N Ibrahim, E Andreopoulou, NT Ueno, K Hunt, W Yang, A Nazario, A DeMichele, J O’Shaughnessy, GN Hortobagyi, WF Symmans

Predictive tests for response to chemotherapy by patients with newly diagnosed breast cancer are needed so that appropriate chemotherapy decisions may be made. To date, molecular tests do not provide predictive superiority over the combination of standard clinicopathologic parameters. This study evaluated the strength of a genomic test for predicting response and survival in patients with breast cancer following sequential taxane and anthracycline chemotherapy, using a predictive algorithm based on sensitivity to adjuvant endocrine therapy, resistance to chemotherapy, and chemosensitivity. 

Tumor biopsy samples obtained prior to systemic therapy were used for genomic studies to identify potential predictors of treatment outcome. Predictors were identified using gene expression microarrays to compare expression in samples from patients with higher risk in two responder groups (pathologic complete response or minimal residual cancer burden [RCB-I] vs moderate or extensive residual cancer burden [RCB-II/III]) in ER-negative and -positive subgroups.

Biopsy samples were obtained from 310 patients in the discovery cohort and 198 patients in the validation cohort. Patients in the validation cohort had clinical response rates of 25% (pathologic complete response) and 30% (pathologic complete response or RCB-1), and distant relapse-free survival (DRFS) rates at 3 years of 79%.

After excluding patients with predicted endocrine sensitivity, the chemopredictive test algorithm had a positive predictive value (PPV) of 56% (95% CI, 31%–78%). In the 28% of patients predicted to be treatment sensitive, the 3-year DRFS was 92% (95% CI, 85%–100%), with an absolute risk reduction (ARR) of 18% (95% CI, 6%–28%). In the patients predicted to be treatment insensitive, the 3-year DRFS was 75% (95% CI, 67%–82%), with a PPV of 25% and odds ratio for relapse of 4.01 (95% CI, 1.60–20.4). There was a significant association of predicted sensitivity to treatment and improved DRFS (P = .002). Among patients predicted to be treatment sensitive, the diagnostic likelihood ratio for occurrence vs absence of 3-year distant relapse or death was 0.33 (95% CI, 0.07–0.72).

Patients predicted to be treatment sensitive had 3-year DRFS (92%) similar to that of patients who achieved pathologic complete response after completing neoadjuvant chemotherapy (93%). In addition, patients predicted to be treatment insensitive had 3-year DRFS (75%) identical to that of patients with residual disease.

In the 30% of patients with ER-positive disease who were predicted to be treatment sensitive, 3-year DRFS was 97% (95% CI, 91%–100%) and ARR was 11% (95% CI, 0.1%–21%). In patients with ER-positive disease who were predicted to be treatment insensitive, the PPV for 3-year DRFS was 14% (95% CI, 6%–21%). A total of 26% of patients with ER-negative tumors were predicted to be treatment sensitive. In these patients, 3-year DRFS was 83% (95% CI, 68%–100%), with ARR of 26% (95% CI, 4%–48%) and PPV for pathologic response of 83% (95% CI, 36%–100%). In contrast, patients who were ER-negative and predicted to be treatment insensitive had a PPV for 3-year relapse of 43% (95% CI, 28%–55%). In patients predicted to be treatment sensitive, the test had a significant diagnostic likelihood ratio for predicted occurrence vs absence of 3-year distant relapse or death of 0.27 (95% CI, 0.01-0.94) in patients who were ER-positive and 0.35 (95% CI, 0.04–0.91) in those who were ER-negative. The type of taxane therapy was not associated with predicted treatment sensitivity and DRFS.

After adjusting for standard clinicopathologic parameters, genomic predictions were independently and significantly associated with risk of distant relapse or death (sensitive vs insensitive: hazard ratio [HR], 0.19; 95% CI, 0.07–0.55; P = .002). The predictive utility of a multivariate Cox model of clinicopathologic factors (tumor stage and ER status) was increased with the addition of the genomic prediction (likelihood ratio, 13.8; P < .001). Other previously published genomic predictors were also significantly predictive of pathologic response in the discovery and validation cohorts, but, paradoxically, predicted worse DRFS in patients predicted to be treatment sensitive.

There was a clinically meaningful survival difference between patients predicted to be treatment sensitive and those predicted to be treatment insensitive. The predictive test in this study improved on the predictions based on clinicopathologic parameters.

Radioactive Seed Localization in Surgery

Could this be the end of wire localization?

Radioactive Seed Localization Guides Surgeons to Nonpalpable Breast Lesions

Elsevier Global Medical News. 2011 May 11, MG Sullivan

WASHINGTON (EGMN) - Radioactive seeds were a safe and effective method of pinpointing nonpalpable breast lesions for surgery, with an 85% rate of negative margins on the first excision and an ipsilateral recurrence rate of less than 2% over 33 months, according to a large retrospective study.
Close margins occurred in 12% of the 767 patients with nonpalpable breast lesions, and positive margins occurred in 3%. The overall re-excision rate was 15%, Dr. Lee McGhan of the Mayo Clinic, Scottsdale, Ariz., said at the annual meeting of the American Society of Breast Surgeons.

Performing the procedure is "almost intuitive," with a very low learning curve, he said. "It is now our method of choice when dealing with preoperative localization of nonpalpable breast lesions."
His retrospective review of 978 prospectively collected patient records comprised 1,000 radioactive in 2003-2010. Almost 1,150 seeds were deployed.

The patients' mean age was 65 years; their mean lesion size was 1.2 cm. Most (550) had an invasive carcinoma; 217 had DCIS (ductal carcinoma in situ); 115 had atypical hyperplasia, and the remainder, uncertain or suspicious percutaneous biopsy results.

Dr. McGhan reported 33-month follow-up results on the 767 women with either invasive carcinoma or DCIS. Most patients (910) received just one seed; 84 received two seeds; 5 received three seeds; and 1 patient received four of the devices.

Most (76%) underwent the procedure at least 1 day before surgery. Typically, Dr. McGhan said, patients came to the clinic a few days before surgery for an evaluation. Many chose to have the localization on a Friday, stayed over the weekend, and had the seeds removed early on Monday morning.

The 4- to 5-mm seeds containing radioactive iodine-125 can be placed up to 5 days before surgery. They were deployed through an 18-gauge spinal needle under image guidance; post deployment, a mammogram or ultrasound confirmed their position near the lesion. "We used a handheld gamma probe to identify the area of greatest radioactivity at the skin surface, marking the optimal site of skin incision," Dr. McGhan said.

Intraoperative complications included 30 displaced seeds - including 3 suctioned up by operative tubing and 3 that were improperly deployed during radiology - as well as one instance of an incorrect incision site resulting from a miscommunication between the radiologist and the surgeon, Dr. McGhan said. All of these seeds were retrieved with no patient harm.

All of the localized lesions were successfully removed, along with their associated seeds; the specimens were sent to pathology. Among the 550 invasive cancers, margins were negative in 87%, close in 9%, and positive in 3%. Re-excision was required in 13% (69).

Among the 217 DCIS lesions, margins were negative in 77%, close in 19%, and positive in 3%. Re-excision was necessary in 23% (49).

Sentinel node biopsies occurred in 544 cases, and were successful in all but one, Dr. McGhan said. "There was no blue dye detected, which was determined to be due to tumor invasion of the lymphatics rather than a direct complication of the procedure."

The mean follow-up period was 33 months. Over this time, the overall ipsilateral recurrence rate was 1.6% (12 patients). The rate was slightly higher among patients with DCIS (3%; seven patients). The local recurrence rate was 1% (five patients) among those with invasive cancer. By the end of the follow-up period, there were six mastectomies secondary to recurrence: three (0.5%) in the invasive cancer group and three (1%) in the DCIS group.

Saturday, May 14, 2011

Hi, Have We Met?

Even though we have been around since 2007, sometimes it seems like people in our very own community, the breast cancer community that is, don’t know who we are or what we do. Here is a brief guide to the No Surrender Breast Cancer Foundation:

Q. Are you a non-profit?

A. Yes. We are a 501 c3 not for profit organization based in New York. We serve women (and men) all over the world.

Q. What do you do?

A. Picture this: You are diagnosed with breast cancer. The doctor’s words are still floating in the air in front of you. You are unable to hear him anymore, the words “you have cancer” have rendered you temporarily deaf. You go home, and it hits you. Frantically, you go online and you are confronted with outdated stats, scarier than hell stories and your friend’s ever so helpful story about her mother-in-law’s hair dresser’s daughter who died within week of diagnosis. That’s where we come in. You click on our Main Website and find, in English, not doctor-speak, exactly what you need to know, from your pathology report, to your surgical options, the many types of chemo, side effects, new studies, basically everything you need. You feel at home, you feel like someone actually understands what you are feeling. We do. Why? Because we are By Survivor - For Survivor. It is written from our point of view- the patient’s point of view. You will get the real story of what everything feels like because we have all been there.

Q. Do you have to be finished with treatment to be a survivor?

A. Not at NSBCF. We quantify “survivor” from the  moment you hear you have cancer.

Q. Do you help people in person?

A. Yes! We also have a live, 24/7 Support Forum that you can easily access from the main website. You can speak to women in every stage of treatment.

Q. Do you have doctors there?

A. No. We are not doctors. But we have a medical researcher who keeps us up to date on every new treatment option, study result, clinical trial and supplemental options for your care.

Q. Is it only for newly diagnosed women?

A. No. But we specialize in walking the newbie through those horrifying first weeks and getting her to a place where she becomes her own best advocate. We have many women who have advanced disease on our forum. Several have left other forums that tend to focus on the negative. We focus on the positive. Not sugar coating the disease, rather, arming them with the information they need to fight it and helpful tips to ameliorate some of the side effects of continuous treatment.

Q. Is that all you do?

A. No way. We have a very important program, known as the Before Forty Initiative that seeks to educate young, African American women about their increased risk of developing the aggressive form of Triple Negative Breast Cancer and the vital need for the age of baseline screening to begin at age 35 and at 30 for high risk groups, including African American, Hispanic and women of Ashkenazi Heritage.

Q. Anything else?

A. We have a boots on the ground network of fellow No Surrender Members called the Sister Corps. We connect you with the sister in your area if you need one- on - one support.

Q. Is it just cancer?

A. You will find us to be a valuable resource for living the best life AFTER your diagnosis. Nutrition, supplements, exercise and lifestyle changes are explained and encouraged to reduce your risk of recurrence or to help keep you healthy while in treatment. We even have a book, “Intimacy After Breast Cancer, Dealing with Your Body, Relationships, and Sex” that takes over where your doctor leaves off. Everything is covered. It helps you reclaim your life.

Q. Wow. How can I get involved?

A. We are always looking for assistance in any of our programs. It may be becoming a Member of the Sister Corps, helping us spread the word about the Before Forty Initiative, and financial support. This is something we really need. We are not flashy and don’t have big name celebrities helping our cause. (However, when the big name celebrities get breast cancer, they come to us for help.)

Q. Do I have to wear pink?

A. Hell No! We don’t do pink. We get you through your breast cancer.

Tuesday, May 10, 2011

More Proof: Young Women Need Screening

Why the Before Forty Initiative is So Vital

ASBS: Mammogram Studies Suggest Use in Younger Women
By Charles Bankhead, Staff Writer, MedPage Today
May 03, 2011 

WASHINGTON -- Excluding younger women from routine screening mammography
may increase the risk of larger, more advanced tumors at diagnosis and adversely
affect survival, data from a retrospective chart review suggested.
Among women younger than 50, tumors diagnosed by means other than
mammography were 50% larger and three times as likely to have lymph node
involvement, according to Paul S. Dale, MD, of the University of Missouri in
Columbia, and colleagues.

The risk of recurrence was almost six times higher, and both disease-free and overall
survival were substantially lower among women who did not have mammographically
detected cancer.

"Mammography detected cancers in women ages 40 to 49 that were smaller, had
less nodal metastasis, and were associated with increased survival," Dale said here
during a press briefing at the American Society of Breast Surgeons meeting.
"Excluding women in this age group from routine mammograms will potentially result
in later disease diagnosis and poorer survival rates for women ages 40 to 49."
Another study reported at the meeting suggested that failure to perform routine
mammography in younger women may miss opportunities for early diagnosis of
hormone-receptor positive, HER2-negative, and triple-negative tumors, particularly
among women of minority groups.

In 2009 the U. S. Preventive Services Task Force (USPSTF) ignited a firestorm of
controversy with revised breast cancer screening recommendations that encouraged
individualized decision making about mammography for women ages 40 to 49.
Previously, annual screening had been the norm for all women, beginning at age 40.
Almost immediately, proponents of annual screening at age 40 criticized the
recommendation for creating confusion and putting younger women at increased risk.
Played out largely in the media, the arguments and counterarguments reached a
point of such contention that HHS Secretary Kathleen Sebelius found it necessary to
release a statement emphasizing that the USPSTF does not set health policy.
The studies reported at the ASBS meeting approached the controversy from a "what
if" perspective, examining potential risks and consequences if younger women
diagnosed with breast cancer had been omitted from routine mammographic

"Breast cancer mortality rates have been declining since 1990," said Dale. "Mortality
rates have significantly decreased in women younger than 50, and this decrease has
been attributed to earlier detection of presymptomatic breast cancer through

To examine potential consequences of not screening younger women, Dale and his
team reviewed breast cancer records for a 10-year period and identified women
whose disease was diagnosed before age 50.

The review resulted in a study population comprising 145 women with
mammographically detected breast cancer and 166 whose cancer was diagnosed by
other means.

Comparison of the two groups showed that nonmammographically detected breast
cancer had a strong association with high-risk features:
Larger size, 30.38 mm versus 20.68 mm
Nodal involvement, 85 (56%) versus 28 (25%)
Positive family history, 38 (25%) versus 19 (15%)
Recurrence, 40 (23.4%) versus 7 (5%)
Additionally, women with mammographically detected breast cancer had a five-year
disease-free survival of 94% versus 71% for nonmammographically detected cancer
and overall survival of 97% versus 78%.

Even when detected at an early stage, breast cancer in younger women tends to be
higher risk, data from the second study showed.

Those findings came from an analysis of 46,700 women who had diagnoses of ductal
carcinoma in situ (DCIS) or T1N0 breast cancer included in the California Cancer
Registry from 2004 to 2008.

The study population included 10,566 women ages 40 to 49 (22.6% of the total), said
Sharon Lum, MD, of Loma Linda University in California.
Comparison of clinical and demographic features of younger (40 to 49) and older (50
to 74) patients showed that the cancers in younger women were significantly more
likely to be:
Hormone receptor positive, OR 1.85 (DCIS) and OR 1.43 (T1)
HER2 positive, OR 1.46 (T1)
Triple negative, OR 1.67 (T1)
Younger women with DCIS or T1 disease were significantly more likely to be from
minority racial/ethnic groups (OR 1.44 to OR 1.82).

Excluding women ages 40 to 49 from mammographic screening could affect early
diagnosis of high-risk cancers and would disproportionately affect minorities, possibly
leading to diagnosis of more advanced-stage disease, said Lum.

Primary source: American Society of Breast Surgeons
Source reference:
Dale P, et al "Mammography in 40-year-old women: The potential impact of the U.S.
Preventative Services Task Force (USPSTF) mammography guidelines" ASBS 2011;
Abstract 1754.
Additional source: American Society of Breast Surgeons
Source reference:
Aragon RJ, et al "The potential impact of USPSTF recommendations on the early
diagnosis of breast cancer" ASBS 2011; Abstract 1670.
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