Ann's Summary of This Meeting

Attended by Scientists & Advocates

Introduction:

The Era of Hope Conference is designed to present information from studies sponsored by the Department of Defense. This was the second such conference ever held. Many advocates were present along with scientists and some clinicians. Most participants agreed that it was one of the most exciting conferences ever held. A large part of its charm was that advocates participated in every aspect of the event.

Fran Visco, President of the National Breast Cancer Coalition and Lieutenant Colonel Kenneth A. Bertram opened the meeting. Bertram said he had chucked his original speech to comment on how moved he was looking at an exhibit called the Faces of Breast Cancer. This display shows at least one woman from every state who has died of her disease. There is a paragraph or two about her life so that her memory can be cherished by all who see it.

Fran Visco talked about how advocates became part of this process and a little about the history of the National Breast Cancer Coalition and the connections with the Department of Defense.

Opening Keynote Session:

Dr. Stanley Cohen was introduced and the story of his laboratory-based discovery that led to to the monoclonal antibody her2 (and her1 etc.). At the time, his original work was not thought to lead anywhere. This was an interesting example of how “pure” research may someday be helpful.

Dr. Dennis Slamon then spoke. His work with her2 led to Herceptin, the drug being used along with chemotherapy to control disease. This drug has been successful in controlling all but brain metastases. Dr. Slamon stated that in his opinion Herceptin does NOT need to be given with some chemotherapies since the combination can greatly increase the dangers of cardiotoxicity ( or heart problems). He was specifically speaking about what is called the adjuvant setting. This is when the patient has early stage disease and chemotherapy is given more as a preventive (which may or may not be doing that job).

This statement came after he reported on results of various studies using Herceptin with Taxol and Adriamycin.

We then heard from Christine Norton, an advocate from Minneapolis who gave her perspective on how advocates participated in creating the original trials for Herceptin. It is well acknowledged that the trial would have foundered if not for that support. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Dr. Anna Barker, former president of the American Association for Cancer Research spoke the next day. Her talk was entitled “Challenging Assumptions”.

She discussed the fact that scientists were just as resistant to change as any other group and perhaps a little more. She stated some reasons for this:

A new idea is perceived as too risky, it will go away if ignored, there is no data on it, there is probably a fatal flaw anyway, it really can’t work, and so there is the focus on what is wrong with the idea.

She mentioned various scientists whose work was challenged in their lifetimes including, Copernicus (Astronomy); Einstein (Cosmos-he saw things in simple ways); Watson & Crick (DNA); Fred Smith (creator of Federal Express); and Mike Bishop and Harold Varmus who discovered oncogenes in cancer, as just a few.

She then touched on what is genius and innovation:

Rejecting the obvious solution Finding ways to generate multiple non-obvious solutions Combining solution & methods from unrelated fields Taking risks-being bold

Making mistakes of which the biggest is not making any Thinking like a “beginner”, because experts are often stuck in the “box” Expecting the unexpected Having passion and perseverance

“Discovery consists of seeing what everybody else has seen and thinking what nobody else has thought”, Albert Szentgorzyski, Nobel Laureate.

Some on the above lists can come from the advocate community. Many of us believe that our “naive” questions can stimulate thought. We do not know the “rules” so we often think of new ways to look at old things. Sometimes simple answers are the answers. Some of this sounds corny but it is what enables many advocates to participate fully at meetings.

And at this meeting, that was fully appreciated and in fact, celebrated. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - The following are random notes taken from several speakers on issues I thought were important:

Dr. Sofia Merajver on Genetic Determinants of Breast Cancer Phenotypes: Between Patient and Genes-

In discussing Inflammatory Breast Cancer, she stated that the 5 year disease-free survival was less than 15%, but that “it responds well to treatment”. I was struck by this because of two things. One is my belief that by proactively working on our health we can change any statistic (only applicable to groups anyway) and the second is what does it mean to respond well to treatment if only 15% survive after that treatment. It indicates to me that the treatment has no REAL meaning (certainly it doesn’t sound like it saves/extends lives).

She also said that a gene found in pancreatic cancer was also found in some breast cancers-RhoC GTPase usually signaling invasive disease at inception and rapid growth and spread.

Dr. Craig Allred on Biology of Pre-Malignant Breast Diseases-

He said that not much is known about “lobular lesions” but we know more about ductal carcinomas. He said the risk of invasive breast cancer in people with “usual” hyperplasia is twice that of normal while atypical hyperplasia is 4X and those with carcinoma in situ have a 10X increase in risk. But he also said that progression is not obligatory in most preclinical situations.

George Sledge spoke on Chemoprevention and the BCPT1 Trial (Tamoxifen for Healthy Women-see Ann's Testimony and other articles on this trial). The limitations included He said that ER and PR receptors are few in normal cells.

Dr. John Potter on Breast Cancer-What Do We Know About Acquired Risks?

He said that there were 175,000 cases of invasive cancer annually, 40, 000 DCIS and 45,000 deaths each year. In 1600 Ramazzini (a long ago ‘scientist’), described breast cancer as a risk of nuns.

Lower BMI body mass index in premenopausal women conveyed greater risk. The weight gain, not the absolute weight posed greater risk for postmenopausal breast cancer (I had heard that weight gain at menopause also was a risk factor in heart disease). “It may be that homeostasis of estrogen is more important than the levels”. It is possible that late-age birth, weight gain post menopausal, late menopause or late oophrectomy may contribute to risk.

Japanese women are mostly diagnosed with ER/PR negative breast cancer.

Mary Claire King on Genetic Analysis of Human Breast Cancer

She stated that in women with mutated BRCA1 or 2 genes, pregnancy DID NOT reduce risk. (Study in Lancet, Jernstrom, H 1999 p.354) Smoking did reduce risk (it lowers estrogen) among mutated gene carriers (Brunet, JS et al JNCI 1990).

The consumer perspective was delivered by Kathy Zeitz who comes from a high risk family. She talked about some of the issues in making decisions, both for herself and speaking with her daughter and other family members. Everyone’s feelings varied at different times in the process of choosing options. At one time her daughter urged her to be tested for genetic mutations, then decided NOT to do the testing herself. It is a complex issue. The solutions are not very good and the information we have is constantly being updated.

Dr. Laura Esserman talked about patient issues around participation in clinical trials. -Reluctance of patients to be randomized -Concerns about “side” effects of treatment -Possible extra time needed upon involvement -Information availability and awareness -Interference with regular care

Younger patients were more concerned about costs, less about alternatives, more concerns about transportation and dependent care, but had less trouble obtaining information on trials.

Doctors issues included: -Lack of information or contact person -Preference for a particular treatment arm -Increased office staff time -No interference -But had no problems with an Alternative Medicine trial

Older doctors were more concerned about lasting “side” effects than younger doctors. Private clinicians seemed to feel there were more barriers than did academic hospital-based physicians or HMO-based. There is a website for doctors to look at. There was also concern about loss of patients who might go elsewhere for trials. Most patients like referrals as they feel better about their own doctors (a trust issue).

Mel Silverstein on Ductal Carcinoma in situ: Diagnostic Dilemma and Therapeutic Controversy

Dr. Silverstein is known for his work in helping to establish information about margins and a different style for pathology examinations.

He pointed out that DCIS is NOT: unlimited growth, angiogenic, genomic elasticity, invasion or metastases. DCIS is usually unicentric (in one location) it can have contiguous or just one area of growth. If multifocal, it is likely to be within 10 ml or less apart. (80% of the time). It is generally non palpable. Treatment is excision (surgery), can be radiation therapy but that depends on the biology of the lesion, its anatomical distribution and the genetics of the remaining tissue.

Both the NSABP (National Surgical Breast & Bowel Project) study B17 and EORTC (European study group) showed there was NO survival benefit from radiation for DCIS. Actually there was a small reduction in mortality of 2-4% but it was offset by increased heart and great vessel mortality. There was reduced local recurrence. Today’s radiation techniques may be more heart protective (Ann’s NOTE: I think this is true only at certain centers that have the MOST up-to-date equipment and use the most modern techniques).

When DCIS was untreated, a 25 year follow-up showed 42% got invasive cancer. 20% of those died from their disease.

It is likely that if one had invasive cancer, that DCIS was present, but obviously not all DCIS progressed to invasive.

Dr. Lawrence Wickersham of the NSABP spoke on Results of NSABP Randomized Trials in DCIS. Basically there was a lot of disagreement over the value of radiation therapy. He also felt that most pathology departments were NOT prepared to do the type of work that was done with Dr. Silverstein’s group.

Dr. Susan Love spoke on the Controversy: Hormones in Breast Cancer

She stated that menopause is natural, therefore medications should be a last resort and taken for a short time. Perimenopause is temporary, lasts 4-5 years, varies individually and cross-culturally.

Observation studies cannot prove cause and effect because health women tend to participate, they ten to take the drugs and take care, there is a ‘surveillance’ effect, there has generally been short follow-up, relative risks are NOT absolute and each study seems to look at different aspects.

Women with low bone density have 62% less breast cancer risk. Women with the highest have 2 to 2.5 X greater risk. Less estrogen keeps bones less dense and estrogen is a factor in breast cancer. There is a second period of bone loss at the age of 70+.

Taking HRT before breast cancer develops usually has meant less aggressive disease but there have been deaths anyway.

If one is at low risk for coronary heart disease (CHD) and breast cancer, there seems to be NO benefit from taking HRT. It may not prevent heart disease and it may cause breast cancer.

ERT and HRT have different effects, ERT may be better. We need more data. If one is at high risk of breast cancer, do not take hormone replacement therapy. Lifestyle changes can work well-not smoking, taking folate, Vitamins B and D, Calcium and Soy.

Dr.Ian Thorneycroft spoke from a position favoring HRT

He suggested that some of the benefits include decreased risk of Alzheimer's, macular degeneration, hot flushes, myocardial infarction,less urge in incontinence and lowered risk of GI cancers. It offers better sleep, better lipid profiles, thicker skin, less vaginal dryness, bone loss/fractures and better teeth.

He stated that there was a risk of increase of endometrial cancer with unopposed estrogen, vaginal bleeding and deep-vein thrombosis as well.

The 1997 meta-analysis in the Lancet looked at 55 studies (and the original data) to ascertain that over 15 years of exposure, there was a 14% increase in risk of breast cancer. That risk seemed to disappear five years after stopping use of HRT. The risk was shown to increase with later age of menopause.

Premarin has been on the market for almost 60 years yet there are no definite answers. Dosage used to be 2.5 mgs and is now down to 0.3mgs.

Criticism of the studies include many factors as he acknowledged. One factor might be that women on ERT live longer and therefore get more breast cancer.

A recent study showed that women using ERT alone had more cases of lobular carcinoma (usually 10% of the population).

Joseph Schlesinger mentioned that Japanese women versus American-Japanese women were no longer at as low risk of breast cancer as had been seen previously.

Malcolm Pike speaking on Overview of Chemoprevention stated that the use of oral contraceptives for 10 years reduced the risk of ovarian cancer by 50% and that this lasts "forever". It also applied to endometrial cancer.

He also believes that much breast cancer is histologically malignant but biologically benign (meaning the incidence has risen but mortality is the same).

George Sledge spoke about issues from the BCPT 1 Trial-the use of Tamoxifen in Healthy Women. This issue is covered in several other articles on this site.

He explained some of the limitations of the study -very few black women, very few latinas or asian women -healthy population (probably more than the general population) -30 cases of breast cancer per 1000 women who took the placebo got breast cancer during the study period, contrasted with 15 in 1000 among those using Tamoxifen.

Following the 1 in 9 concept, this meant that about 90-100 women would be diagnosed in their lifetime.

Dr. Sledge made it very clear that investigators must be AWARE that these women are NOT patients. They are not ill. He said it was very important to have a personal relationship between the doctor and the woman.

Bone fractures are more common in whites than in blacks but black women are more likely to have more vascular strokes, pulmonary embolisms and deep-vein thrombosis.

The next speaker was Helen Schiff, an advocate from New York City. She gave a very impassioned, yet well researched talk on Tamoxifen. Her speech is here on the site in its entirety.

The Department of Defense Breast Cancer Research Program offers tapes of this event and its predecessor (two-three years ago) and a summary may be placed on their website. http://cdmrp.army.mil/bcrp/eoh


Era Of Hope Speech

Helen Schiff's passionate presentation on Tamoxifen for healthy women, 6/00

Questions and Answers on Tamoxifen
2002 Era of Hope Meeting

September 2002 Orlando

Age/Body Mass Index Affect Tam Metabolism
NSAID (Anti-Inflammatory) May Slow Growth
Estriol May Reduce Risk
Conformal Partial RTx
Chemo-No Survival Advantage vs. Endocrine
Conjugated Linoleic Acid/Tumor Growth
Era of Hope 2005

Various summaries

Exercise to Increase Lymphocyte Activation After Chemo
Effect of Caloric Restriction. Moderate Exercise:Estrogen/IGF-1
Risk Factors for Lympheda in BCA Survivors
Incidence, Time Course & Determinants Menses After Treatment
Treatment-related Cardiac Toxicity: BCa Pts
Presentation of Gene Profiling: An advocate Perspective

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