Sunday, November 23, 2008

YU Medical Ethics: Catching Cancer Before It Catches You- Medical and Halachic Implications of BRCA Gene Testing

These notes are unofficial and unedited. Any and all mistakes are mine

YU MedEthics Folks: On behalf of the YU MedEthics Society, we’d like to welcome you to “Catching Cancer Before It Catches You.” Cancer therapy is a medical topic that is important. Just last week there was an article in the New England Journal of Medicine on inherited cancers- tonight we are honored to have four distinguished speakers come to address us on this important subject- Dr. Stanley Weintraub, Director of Oncology at Hackensack University- completed internship and residency at Metropolitan Hospital in New York City. Board certified in hemotology, medical oncology etc- he will speak about the BRCA gene, etc. Aliza Ricklis is a genetic counselor at Hackensack University- discussing the genetic testing process, which is complicated and emotional but relevant. Rabbi Willig is the Rosh Yeshiva, etc- and he will address the halakhic aspect. Ms. Anne Frisch tonight will share her personal experience as a cancer survivor and patient with Dr. Waintraub. Thank you to speakers, boardmembers, etc for ensuring the success of this event- CJF, Stern College for Women Student Council, YCSA, SOY, etc for sponsoring this event. YU MedEthics is a medethics society available to promote understanding, etc.

Please hold all questions until the end of the evening, when our speakers will be more than happy to answer them.

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Dr. Stanley Waintraub:

First of all, I want to thank Tali, Jenny, Rivka and my good friend Aaron Kogut for organizing this event. I’m honored to be here with Aliza and Rav Willig and I’m overwhelmed by the attendance. I think this is incredibly heartwarming to me- I don’t mind coming on a Sunday night, but for you, it’s here. I hope we don’t scare you too much- our job tonight is really to educate you. We just want you to be educated about what the gene is, where it affects the population at large- this lecture will be very few jokes because this is a very serious topic.

Identifying and Managing Hereditary Breast and Ovarian Cancer Syndrome

LEARNING OBJECTIVES

- Cancer risks associated with BRCA mutations
- Use of genetic test results in medical management
- Features of hereditary breast and ovarian cancer syndrome (HBOC)
- Relevant health insurance issues

There is a test called the BRCA test- done by only one company in the entire world, this is one of their pieces of paper that they give out for who gets tested.

HEREDITARY BREAST AND OVARIAN CANCER SYNDROME

-Characterized by significantly increased risks for breast and ovarian cancer
Most cases are caused by a BRCA 1 or BRCA 2 mutation
Clinical testing is available to identify individuals with mutations

WHAT IS THE BRCA GENE?

There are normal tumor suppressor genes that tell the cancer to undergo apoptosis, aka programmed cell death
-In BRCA and p-53 mutations, the tumor suppressor gene is defective
This allows the tumors to grow

Most people, when they get exposed to a cancer cell, realize it is foreign- the cell is taught to die, to undergo programmed cell death. The problem with people who have BRCA 1 or 2 is that they have an abnormal tumor suppressor gene- the tumor suppressor gene is defective and cancer grows unchecked.

What is BRCA 1 and BRCA 2? Two of the 30,000 genes that we inherit from our parents- they are genes located on chromosome 17 and 13 respectively that normally produce a protein that helps to correct mistakes in the DNA. The BRCA1 and BRCA2 mutation interferes with the genes- not just mother to daughter, but could be father to daughter, also.

Every woman is born with the BRCA 1 and BRCA2 genes- when functioning normally, they pose no risk to a woman- a functioning BRCA gene prevents tumor growth by limiting cell division. Individuals predisposed to breast cancer are born with a mutation in one of their two copies of a BRCA gene- for breast cancer to occur, both BRCA genes must be defective.

A normal woman who doesn’t have the gene, will have one damaged gene, then two damaged genes and the tumor develops- so her chances of getting cancer are 1 in 8. In hereditary cancer, you start off with a damaged gene, the second one becomes acquired and cancer develops. For example, a 30 year old woman with the mutation now has a 1 in 3 chance of developing breast cancer. Over her entire life, are 50%- 80% chance of getting cancer.

WHO DO WE LIKE TO TEST?

Breast cancer in two or more close relatives, such as a mother and two sisters
early onset of breast cancer in family members, often before age 50
history of breast cancer in more than one generation
one or more BRCA positive relatives
frequent occurrence of ovarian cancer
eastern and central European (Ashkenazi) Jewish ancestry with a family history of breast or ovarian cancer

Once we refer patients- the policy in my cancer center, which is the 5th largest cancer center in the USA- we refer them to a genetic counselor for reasons that Aliza will explain to you about genetic counseling and why we don’t want to do it in the office.

WHY SHOULD WOMEN BE TESTED?

- Women are relieved to know if they are positive
- If they are positive, can make an educated decision as to how to proceed/ what treatment should be done to try to prevent cancer or catch cancer before it catches them
- Whether other family members should be tested

DISADVANTAGES

- Many women are very scared when they are tested
- Scared if they are positive
- And what do you tell your family, etc?
- Women who test negative- doesn’t mean they won’t get cancer- they are still in the pool of 1/ 8- there are other genes out there that we don’t know about yet

HEALTH INSURANCE-
Can you be denied health insurance/ can you be discriminated against?

1 out of 500 women will be BRCA 1 or 2 positive- they will get breast cancer about 50% of the time by age 50 and 56-87% before 80. They also have a 27-44% risk of developing ovarian cancer by age 70.

If you have a BRCA gene mutation, you can reduce your risk of developing breast and ovarian cancer up to 96%. 7% of breast and 10% of ovarian cancer cases are hereditary! The most common cause of these hereditary cancers is a mutation of the BRCA1 and BRCA2 genes.

A BRCA mutation increases breast and ovarian cancer risks.

Family history is important for the risk of cancer but the gene really indicates what will happen with the patient about 90% of the time. In fact, if you develop breast cancer you have a greatly increased risk of a second cancer if you carry a mutation in BRCA1 or BRCA2. The risk of a contralateral breast cancer is increased up to 64% by age 70 or 27 (%).

Lifetime risk of breast cancer: 50-85%/ Risk of breast cancer before age 50

OVARIAN CANCER AFTER BREAST CANCER IN BRCA CARRIERS

10-fold increased risk compared to noncarriers- no effective ovarian cancer screening, despite the tests we have- prophylactic suggested- they should have their ovaries removed
FALLACY- MEN CAN’T GET BREAST CANCER

Many men are BRCA positive, and they get breast cancer. Prostate cancer is probably seen more in BRCA than the general population. Both men and women with the mutations have an increased risk of other cancers- pancreatic cancer, melanoma, etc.

A woman’s lifetime chance of developing breast or ovarian cancer is obviously higher if she has the gene- but she also has an increased chance of getting it at a very young age. Also an increased risk of colin cancer; men have prostate cancer; both have increased pancreas cancer, bile duct cancer, stomach cancer.

What about the BART TEST?

Recently, we found a number of women who are BRCA 1 or 2 negative, but still have a huge family risk. We’re finding about 2-3% of these women have the BART gene; they are treated the same way as the women with BRCA.

Not trying to scare you, but educate you.

MANAGING HEREDITARY CANCER RISK

The way to reduce cancer in a BRCA patient is to remove the organ that could become cancerous. That’s what’s so drastic about this- cancer free, but weighing a mastectomy was on front page of New York Times Magazine- Deborah Lindner’s Family Tree.

Part of the tree:

-2 of Robert and Eleanor Price’s sister had BC; 1 had OC
-Eleanor Price Veith- age 87; h/o OC
-Gloria Veith Spurlock- does not want to be tested
Joan Veith Lindner- 64 BC at 58; PM/O; +BRCA 1
Lori Lindner- neg for BRCA
- Robert Milton Price- Died of CC at age 50

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CASE STUDY- He shows us a chart of one of his patients, Lucille. She ends up having her ovaries removed- she tells her sister to get tested, and her sister Nancy removes normal organs, and caught a 5mm cancer growth.

Obviously, you are all young adults and have been taught breast self-exam. Mammography is way too early for most of you in the room. When do women need mammograms and MRIs with the BRCA gene, though? Without the BRCA gene, age 40. With it, age 25.

BREAST CLINCIAL EXAM- Very few cancers are picked this way. Most are picked up through the mammogram.

MRI SCREENING IN WOMEN WITH HEREDITARY RISK FOR BC- MRI, wich insurance companies are fighting against because it’s expensive, is still catching up twice as many as the mammogram, but still not all

What about Tamoxifen? It doesn’t actually work that well and in the end of the day, the only way to prevent breast cancer for BRCA is to remove the remaining breast.

Now, to cut off my breasts or not- this is a woman who wrote a book about the BRCA gene. Her name is Jessica Queller.

Birth control pills decreasing risk of ovarian cancer? A) They don’t work that well and B) that increases risk of getting breast cancer.

IF a woman does have the BRCA gene, we remove her ovaries and breasts- prophylactic oophorectomy- have your children if you are BRCA positive, and after you have completed having children, we will remove your ovaries. That decreases risk over 96% and that is very good. You decrease estrogen that way, actually, and cut down the breast cancer risk as well.

What about occult cancers in BRCA carriers at BSO?

Prevalence of occult tumors: up to 23.5%

This is AR, one of my patients, and she is 47 years old- she had a right breast cancer, invasive ductile cancer- her mother had bilateral breast cancer and ovarian cancer- she decided to remove her ovaries and what we found unexpectedly was an 8mm right ovarian cancer- that was not detectable by Catskans or ultrasounds- we probably saved her life there.

CANCER RISKS FOR MEN
We are not protected. They get cancer- breast cancer, prostate cancer- etc

LIFETIME RISK OF BREAST CANCER
BRCA 1 gene- some increased risk
BRCA 2 gene- 6% increased risk

Now, this is NB- this is a tragedy. One of my patients is currently dying of breast cancer- no older than 45; she has BRCA 2. She had her ovaries and breasts cancer; she is dying of metasthetic breast cancer. One of her sisters has already died of pancreatic cancer. She has another sister who is also positive- she has removed her breasts but she has a brother who is young in his 40s, with prostate cancer.

About 22% of breast cancer patients are now at risk for this syndrome- so what are the red flags for hereditary breast and ovarian cancer? From my end, family history and women under the age of 50.

½ of BRCA carriers inherit the mutation from their father- it’s parent to child, not mother to daughter. All ovarian cancer patients should be tested as well.

INTERPRETING TEST RESULTS

Tests come back as positive for a deleterious mutation, no mutation detected, or the horrible thing of genetic variant of uncertain significance.

We’ve told you why we want women tested; we know there is a medical and surgical management for them, but remember, there are other genes that we don’t know about today.

INSURANCE

A lot of fear that if you are BRCA-positive and perhaps Anne will discuss this- whether the insurance companies can discriminate against you. There is a law that prohibits genetic discrimination because of the test- this is Julie Auden who has the gene, and President Bush signed the GINA act- which protects people from genetic discrimination by health insurers or employees.

Now, recently, Christina Applegate, star of sitcom “Samantha Who,” opened up about her battle with breast cancer and made a startling confession- at 36 she was diagnosed with an early form of breast cancer. She made the decision to remove her breasts and she is BRCA 1 positive and her mother Nancy had breast cancer and also had a mastectomy. The good part about a famous person getting this is that it helps everyone gain awareness about this.

If I’ve scared you, I apologize- but if we catch cancer before it catches us, we’ve saved lives.

Knowledge is Power and Hope.

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They’ve given me an honor to present to you Aliza Rickliss- not one geneticist but a whole group and a whole department, which I think is a very sophisticated way of dealing with a very important issue.

Aliza: Thank you. Dr. Waintraub. I can start by talking Dr. Waintraub for just a minute- he is respeted very much by his colleagues- greatest things are things that come from his patients- what I have to say is that this is my first time doing this kind of thing, so I want to thank my family and brother-in-law because when he saw me post a note for today’s presentation and said: “This is a joke, right?”

The background is a cancer joke called Dr. Rubinson.

Catching Cancer Before It Catches You: Practical Considerations of Genetic Testing

The first question is: Is the cancer in this family genetic? But that’s a trick question, because cancer is always genetic. A lot of you are students who have taken biology, and cancer is something that has to do with replication of DNA- so cancer is always genetic. Question is: Is the cancer hereditary? Is there something where we see a pattern in the family- is there something uncommon about the cancer- and when we think hereditary matters, we an think about genes that are related to cancer.

How much breast and ovarian cancer is hereditary?

BREAST CANCER: 15-20% familial, 5-10% hereditary
OVARIAN CANCER: 5-10% hereditary

Those are the people where the cancer was caused by some underlying genetic or hereditary factor and that is what will be of interest to us-

Who may have a BRCA 1 or BRCA2 mutation?

-Breast Cancer
Early onset- under age 50
Bilateral
Multiple individuals (siblings, parent/ child)
Male breast cancer
Ashkenazi Jewish ancestry

-Ovarian cancer
-Breast and ovarian cancer in one individual
-Other BRCA1 or BRCA2 associated cdancers
-Autosomal dominant inheritance

Although most cases of ovarian cancer are not caused by genetic mutations, it’s something that leads us to think about it.

AUTOSOMAL DOMINANT INHERITANCE

-AUTOSOMAL
-Carried on one of the numbered chromosomes
Mutation transmitted irrespective of the gender of parent or child

DOMINANT- Each child has a 50% chance of inheriting the mutation
BRCA1 and BRCA2 are located on chromosomes that are not related to gender- they are on chromosomes 13 and 17.

THE TESTING PROCESS

Review personal and family medical history
Decide: Should testing occur? Why should I be tested?
Draw blood (1 tube)
Insurance verification
Review results

We like to begin in a family by testing someone already affected by cancer. I’ll explain why later. Testing process is relatively simple by a pure physical perspective. We had an opportunity to explain the results, and then say to the person: now that you know this information, where do you think that we are going to go from there?

NEGATIVE RESULT

Why would someone get a negative result?

Cancer is sporadic or environmental- could be it’s not caused by a hereditary mutation, but because DNA in its replication process spun out of control. DNA doing its normal thing is always on the brink of causing cancer- yet it maintains its normalcy in most cases. Environmental causes I typically don’t discuss, but for a patient who suspects that, they can pursue that.

Mutation cannot be detected by this test- Gene cannot be detected by this test, even though he does have a mutation. This is why we prefer to test the affected individual first as opposed to the unaffected individual. A test doesn’t always catch all the mutations in a gene.

Familial mutation was not inherited

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ARE YOU POSITIVE? Management options for BRCA1 and BRCA2 mutation positive women.

SURVEILLANCE
-self breast exam (monthly)
-clincial breast exam (3-6 months)
-mamogram (yearly)
-breast MRI (yearly)
-pelvic exam (yearly)
-transvaginal U/S (yearly)
-ca-125 (yearly)

SURGERY
-biltaeral mastectomy (90% risk reduction)
-bilateral salpingo-oophorectomy (95% risk reduction)

CHEMOPREVENTION
-tamoxifen

ORAL CONTRACEPTIVES

Usually we do not recommend surgeries/ prophylactic mastectomies to college-age people; it is not the right thing for everyone; it depends on age and more. When we talk about removal of ovaries, we suggest removal of fallopian tubes as well because the same mutations can cause cancer of the fallopian tubes as well.

A Man with BRCA1 or BRCA2 is that some men are more aware and do the things they should be doing, more of a motivator to do the things they were already doing- CBE (clinical breast exam), Prostate screening

Do preventive measures help? The most dramatic reduction in incidence of cancer comes along with mastectomy or oophorectomy.

VARIANT OF UNCERTAIN SIGNIFICANCE- What that means is that it may or may not be associated with increased risk of cancer, and may be reclassified.

Looking at length of gene and may find something that is a change- that’s a mutation in most cases (specifically if it is known to be deleterious- but some changes in a gene don’t have any consequences that we can perceive.) Change in one of the nucleotides doesn’t cause a change in amino acids, etc. So the laboratory calls that a variant of uncertain significance- they hold the information and give it to us, but also, as more people are tested, they see, how many people in the family who have that variation have been affected by cancer? What we hope for when we see one of these is that it will be reclassified as having no significance.

SOME OTHER CANCERS ASSOCIATED WITH BRCA1 AND 2 MUTATIONS

Prostate/ Colorectal/ Pancreas/ Endometrium (Uterus)/ Cervix/ Skin (Melanoma) – melanoma is more with BRCA2

Ashkenazi Jewish population- has a lot of fame in the world of genetics. A lot of people have misimpressions- once had a patient who said, “Yeah, I’m Jewish, so I’m a ball of mutations.” Well-studied population, can be of use to us when we try to understand our own genetics- shouldn’t allow us to scare us, though- in different populations, there are different populations that have been found in BRCA 1 and BRCA 2 genes- when we have a mutation that is specific to a population and we believe it started out in one person many generations ago– we call that a founder mutation.

ASHKENAZIC JEWISH FOUNDER MUTATIONS

-If an AJ individual has a mutation in BRCA1 or BRCA2, there is a 90% chance that is one of thsese-

BRCA1 185delAG
BRCA1 5382insC
BRCA2 6174delT

Population prevalence of 2.65%

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But the risk is not greater in the Ashkenazi Jewish population-

DISEASE PREVALENCE IN BRCA1 AND BRCA 2 MUTATION-POSITIVE AJ WOMEN

-Initial studies included patients with significant family histories (-85%)

Chart provided by the company that does the testing- provide us with information, saying if you have a person with this history etc

OTHER HEREDITARY BREAST CANCER SYNDROMES

-Cowden Syndromes: breast, uterus, thyroid
Li-Fraumeni Syndrome: breast (sarcoma), leukemia, brain, adrenal
Hereditary Diffuse Gastric Cancer Syndrome: stomach, breast (lobular)

There are two points that I will make tangentially- one is about stomach cancer. Especially if that is something that happened way back, stomach cancer could be cancer of the ovaries, abdomen, etc. Another way of getting that is to ask with actual pathology reports from grandparents, etc, if possible.

HEREDITARY COLON CANCER SYNDROMES

Hereditary Non-Polyposis Colon Caner- another

WHO DIRECTS PEOPLE TO GENETIC COUNSELING?

Oncologists/ oncology surgeons/ primary care/ OB/ gyn/ self-referral

TESTING LOGISTICS

Usually covered by insurance (as long as most people in medicine believe the testing is warranted)

HIPAA prevents discrimination for medical insurance

WHAT DO I DO IF I’M POSITIVE?

All the information we’re trying to emphasize tonight is to say there is a very significant risk of getting cancer for someone who has one of these mutations. But there is no dramatic action we would suggest or expect from someone who is college-age.

“The only normal people are people you don’t know very well” ~Dr. Robert Wallerstein, one of my favorite mentors says this.

RABBI MORDECHAI WILLIG- I see in the audience a number of accomplished individuals who feel that medicine, biology- I recommend that you go to them because they are observant, halakhically commited individuals and they have much to teach you. Any kind of genetic testing is scary, even the most benign testing is scary- we’re talking about heavy stuff- but many of us remember that in the early years, when Tay-Sachs testing got on the scene, many of us were very scared- in fact in a landmark teshuva, R’ Moshe Feinstein takes into account that such evidence of being positive can be frighteining to youngsters. Even though it should not be frightening at all! Tay-Sachs, put in perspective, shouldn’t scare you- it should only save you, because nothing will happen to you as long as you make the right marriage choice.

There’s the No-Nothing population for Dor Yesharim, which is very good for those who want to go that way- and the more sophisticated population, where knowledge is power, where you choose to know and just imagine then, that these great rabbinc scholars were concerned about the population for testing for recessive genes, where there is not much cause for it, what would they say about testing for dominant genes? And the sad reality is that in the broader rabbinic world you hear nary a peep about this. It’s just untalked about. A number of years ago, two physicians who I know personally, and I’m giving you a source- it’s in the journal of halakhic contemporary society in Fall 2001- it came out 7 years ago- there’s an article on “Preventative Medicine” by Dr. Depos and Dr. Bookbinder ( heard wrong? not sure if these are the names)- this is what he has dedicated his life to- precisely to preventing breast cancer and he has attempted to receive rabbinic approbation for these kind of mammograms (before we get to the more radical procedures, let’s talk about mammograms.) Unfortunately he was unable to get the support in the rabbinic world to get the kind of Kol Koreis about this- you don’t find any such thing, as a matter of fact he and some other physicians from my own synagogue came to discuss a different but seemingly also preventable disease, colon cancer. The physician I once went to said, screaming and almost crying, “Colon cancer is a preventable disease! If you get tested early enough and more frequently enough, then that’s important!’ How can you not save lives? The only Rav in these 30 pages is our own R’ Hershel Schachter and I have spoken to him myself and I know that this is takka his position, even as a I know full well that in the rabbinical world at large it is not a popular position. What we were able to get form the big Rabbis was that it was a permissible test- which . Now, what they like to say is what you don’t know won’t hurt you, and there will be miracles- that is not my attitude; I am a major advocate of testing in accordance with the experts. I have no expertise in the field; I was very anxious to hear the most recent statistics in tehse matters- I am not here to tell you the medical stuff; you have got to go to the experts- in my view, whatever they say you should do, you should do, and in my view it is halakhically required to do- and in my view, if not required, then certainly advised. Now, another very thorny issue is what happens if in fact you do discover some medical genetic predisposition to these things- may you in fact involve yourself in prophylactic surgery- to catch cancer before it catches you?

The only teshuva we have once again from the Igros Moshe- also, not a full story- Chosehen Mishpat, 2nd volume, page siman ayin gimmel, os zayin, referring to a particular case (thus a very limiting case)- as he puts it, once you do a hysterectomy, generally speaking the doctors take away the ovaries and fallopian tubes even though there is nothing wrong with them because they are afraid it will become cancerous. Now, the teshuva was written in the word 1982, quite a while ago- 5%. And the topic of this teshuva is may you in fact remove these ovaries and fallopian tubes- clearly there is no issue of fertility- this woman is not going to have any children! Guess today it’s not necessarily the case because you have surrogacy- so he says that it’s permissible- it does not constitute a violation of what we call in our language sirus- generally, damaging the reproductive organs is prohibited- it’s a violation called sirus. Even though it is only 5% we should consider it a sakanah- in his view, it is a “chashash gadol” – a significant danger. If I give you a gun with 20 and only 1 has a bullet in it- no one in this room is going to volunteer to shoot with it; who will play Russian roulette with 5%? No one is going to have surgery for a 5% chance because the surgery itslef is dangerous, but here where the surgery is being done anyway, it is advisable that we have.

This is what I have to offer to you- not much! One article in the Journal of Halakhic and Contemporary Society and the other this teshuva referring to specifics of oopherectomies and the like. It seems to me, although R’ Moshe was concerned about the danger of these surgeries, today it is not considered a risk factor- it is a very significant psychological factor (we don’t disregard this- if we are concerned for that in terms of mere testing, how much the more so in terms of full procedures)- mastectomies, reconstructive surgeries, etc- even an oopherectomy which is not as open can still be psychologically devastating- even if someone is not considering having more children, nonetheless, though we do not dismiss this lightly, we are of the halakhic view that saving lives comes first. And if R’ Moshe’s only reason not to remove under 5% chance is because of risk of surgery itself, one has to reevalute when the risk of such surgery is now almost nil. As I am learning incraseignly, not always unanimity in the medical community. Well, there’s no unanimity in the rabbinical community either, so fair is fair! [LAUGHTER] I strongly recommend from the halakhic perspective that any women- there might be men, too- but any woman who is recommended to be tested should do so and should do so right away- nonetheless important to know it right now.

Here I come to my next sensitive point: Shidduchim. In certain circles, don’t test, don’t test, don’t test. Why? Because knowledge can be dangerous and ignorance is bliss! Everyone who is not married yet is thinking about marriage, maybe the female population of the room- why do I have to add another level of drama- to think about this, when do I tell, how do I tell? It’s much more relaxing; this slide through life where ignorance is bliss…true! But it can cost lives. People in this room will know of families- I don’t want to say it’s your family, but it could be with 1, 2, 3 cases of breast cancer- you know in Shulchan Aruch in Second Siman of Even Ezer says that if a disease exists in 2 generations of your family ________ . If a person knows that in your family there were 3 situations of breast cancer- maybe if they were BRCA positive and you were BRCA negative, that would solve the problem!

I had a shaila from someone whose son was dating a woman and the father calls me and says: “Gevalt! I heard there were three cases of cancer in the family.” This lady had a grandfather, an aunt and a cousin- so what do you think? Should I maybe decide to call it off because of this? So I went to the president of my shul, a radiologist primarily of cancer therapy who says- three in a family? That’s about average. They were different cancers, and does not necessarily predict anything wrong with this individual. But three of the *same* - breast and ovarian are considered to be related- then there is a significant problem. I don’t believe it’s wise to sail through life without testing- and say ignorance is bliss and let’s be happy-go-lucky. Halivai if you should be happy-go-lucky, but what if it’s happy but unlucky?

As Rabbanim, we are responsible to save lives. It says that a rabbi who does not instruct his congregants that in cases of a problem on shabbos you must run to save lives, that individual, that rabbis, is called a not-nice name- a “shofech dam.” I say: Tomorrow they are coming to the mikveh with one of those trucks that come to do mammographies and I tell them to get tested.

I had a woman at my shul with a complex niddah shailah. I asked when were you at an OB/GYN next? She said she had no doctor and nothing- so I told her I won’t talk to her (put her in cheirem)- until you get a Pap Smear. Pap Smears save lives! The Rabbis in Israel will disagree with me…but…I have told the people of my shul, from the pulpit, that they must do everything they can to maximize their health, including losing weight- because ifsomeone unfortunately weighs too much he can get diabetes, cancers according to the latest research- in my view, and I may be a minority- it is halakhically requied to do everything we can within reason to live as long as we can. Hashem put us into this world to live lives of Torah and mitzvos and how can we do that unless we live? My bracha to all of you- you should follow the halakhic process, live long and happy lives; Hashem should bless everyone in this room.

Dr. Waintraub: Just 3 things- Rabbi Willig, you are now Rabbi Dr. Willig. Also, the Giants won and the Nets won.

My son who is now at Netiv had to do his senior thesis at MTA and he did it on who is a hero. Now, I have been a doctor for 31 years and I know who my heroes are- my heroes are my patients. A real incredible hero is someone who will come here before this crowd of people and talk about her personal struggle- Ann Frisch.

Ann: Certainly hope I can live up to the hero image that he’s painted for all of you. I think it’s important for all of you to know that I am a nurse by profession- so some of this is based on the knowledge I gleaned by being in nursing for 30 years. I wanted to be a nurse for as long as I can remember- I was a nurse’s aid, registered nurse- came into the position to help patients with many illnesses and ironically those who had cancers as well. First rather suprising, because I was very nervous and scared around cancer patients- but I found working around them to be an incredible gift. Even though I was young then, I saw the world the way you do when you are young, just like many of you- I was proud to be helping all the patients. Back then, for all my patients, their hopes started with me. Because I loved my job, I excelled professionally- I was offered positions that allowed me to care for more than the individual patient- the more people that you meet, the more you discover people who have now or who have had cancer. Like it is for everyone, cancer became part of my relationship with colleagues and friends, and I’m one of those people for whom this kind of thing gets personal. You don’t know me, but I do tend to get involved in the lives of those who have to face down cancer. Hope starts with me- and wouldn’t it be ironic if I too developed cancer.

Mother developed cancer, thunderbolt hit. While working and raising my two daughters, I prayed for her to be okay- walked for the cure- hung in there because her hope, of course, started with me. Last year, once again, hope started with me- because one week before I accepted to lead my employer, New York City Corporation in their fight against cancer- I went to my annual mammography- shockingly surreal experience of being informed that I too had breast cancer and now I know, a year and a half later, that there were other complications, none of which I would have known had I not been screened. Today I am finished with my initial treatments, committed to efforts to inform patients, family etc to help catch cancer before it catches you. Hope starts with me and ladies and gentlemen, tonight, with you as well.

Many of you may feel that individuals are afraid to talk about cancer. My friends certainly are. I am not afraid to talk about it; none of us can be afraid to talk about it- we have to talk about it to inspire others to take our place on the front line of this battle, to cry and to laugh about it. Telling the truth about cancer is hard, it’s empowering and it helps us do the one thing we must do each day- celebrate life. Who better than me to do all these things- fortunately, this is the mere beginning of my story, although to many of you, it may seem like enough. After being diagnosed with __ 1 cancer, had a lumpectomy, was referred to fabulous, incredibly intelligent physician, Dr. Stanley Weintraub. Dr. Weintraub handed me a card to my genetic counselor and told me I needed to get tested to see if I had the BRCA mutation. I looked at him in astonishment because various physicians I had seen before had not said anything about this. He explained quite firmly that there was no way of knowing for sure without being tested. I placed the card he gave me in my wallet. He had a follow-up with me. “Did you have the test?” I said “Give me a @#$%# break.” I’m not going to tell you what he said back to me- I felt like he was badgering me, etc.
Decided to be tested in February 2008. Upon meeting genetic counselor, gave me a high degree of encouragement that she would be surprised if I tested positive- then, as required to do, said if I were positive- I said that I would have my ovaries removed because I was aware that it was much more difficult to detect ovarian cancer, etc. After that, my husband and I left the office and prepared to return in a month for good news.

I did replay in my mind how I would feel when she said I was negative- that morning, I started thinking maybe I could be positive- after all, my mother had had breast cancer, etc. I told myself Dr. Weintraub was just being cautious, etc. I tried to look at the genetic counselor’s look on her face. She blurted out, “You tested positive” and I was shocked. Initial thoughts: How unlucky could someone be? First being diagnosed with breast cancer at 50 years old, and then being told I carried this gene which would haunt my children, grandchildren, etc. I began to cry- I was left to deal with this news in my very own personal way. My husband and I left the office and proceeded to drive to work. I’m not even sure how I got through the rest of the day, especially because that afternoon I was supposed to meet with the president of my corporation. Went back home, lay in bed and absorbed this information- those 3 days in bed were not pleasant- I was crying and struggling with that- so 3 days later, when I finally emerged from my bed and returned to work I had sorted out in my mind how I, Anne Frisch, was going to use this information to empower me and others.

Called my surgeon and asked for a referral to a gynelogical – first thing to do was to remove my ovaries which were nothing but a ticking time bomb- many of you may think of this as a cavalier attitude, but I decided to battle this genetic nightmare. Having breasts removed, met with a plastic surgeon- we discussed various breast reconstruction options- we scheduled to have this on December 1, 2008- one week from tomorrow, I will once again return to the hospital for what I hope is the final stage in my battle with cancer- 10 hour surgery to remove and reconstruct breasts. My family and I want to use this information to help us catch cancer before it catches us. There is hope for us to continue to celebrate life. If someone told you that there was something you could do to save your life or someone else’s, wouldn’t you want to do it and wouldn’t you want to know what it was- isn’t our goal to celebrate life in very real ways? We all have fears of surgery and loss of body parts- I will confide in you that I feel this very way but I fear cancer more. I want to see my children and grandchildren married- I want to spend the golden years with my husband. I want to help my eldest daughter Jaimie cope with the fact that she recently found out that she is a BRCA carrier as well and more than anything, I want to help […] catch cancer before it catches us.

QUESTIONS

Yonah: Rav Willig, based on what we have seen tonight and based on what you said, would you then say that there is a halakhic mandate to actually do something?

Rav Willig: Do something means the surgeries?

Yonah: Yeah

Rav Willig: I thought I said it before but I’ll say it again. In the Igros Moshe we quoted, that was only a 5% risk- we only discouraged surgery because of the risk factor associated, without this risk factor, how much more so a 55% chance- so I believe these surgeries should be done, may be done and maybe from the halakhic perspective MUST be done in order to save lives.

QUESTION: For Dr. Waintrabu- there was an article in Nature about using microarrays to look for metasteses of breast cancer- is that technology used

ANSWER: Microarrays are not being used to diagnose breast cancer or used for risk of cancer. The only thing for which they are being used are different sensitivities to different thereapeutic options for each cancer- not yet in this group of patients, though.

QUESTION: Getting back to the issue about shidduchim, would it be a halakhic mandate for the woman/ man to say they are BRCA positive? Let’s say if they have a

ANSWER: Kay. That was the hardest question of the night. I spoke on the past about disclosure in shidduchim. I believe that matters of health can be divided into various categories- there are some that obviously have to be disclosed as soon as possible, dramatic, radical issues that a person has, male or female; there are some that are so insignificant that they need not be disclosed and there are many that I believe need be disclosed but not initially, not at the very beginning, because if a person is required to disclose at the very beginning, then there is a serious posisiblity of compromising this. I think this is one which belongs in the middle (disclosed in the middle of dating.) This young man asks around or maybe his parents ask around about the health of the family say oh no, this must be osme kind of a hereditary situation- may be something which people are presuming- not required in my view to reveal it upfront, but she should reveal it as the relationship progresses. It is absolutely a halakhic requirement? My Rebbe R’ Soloveitchik told a person it need not be disclosed (for Morfan’s Disease) and then it came out anyway and this woman then had a broken engagement. Igros Moshe Teshuva- incredible teshuva about a girl who never had a period- you get married and hope it gets better and agree that if it doesn’t get better, three years later you agree to take a get. And then this man is divorced after three weeks! How could he say that? Because his heart goes out to every Jewish woman- I don’t know if I could give such advice. What will happen if after six weeks of going out and saying I have diabetes? I’m going to discontinue the relationship and how come you didn’t tell me in advance! I always say- send them to me. And then I pull out R’ Moshe’s teshuva and show something much more dramatic than I would say and say don’t look at me- we care for every Jewish man and every Jewish woman- we try to do the best we can, very delicate balance- some of the parameters involved.

QUESTION: This is for Dr. Waintraub. About what percentage of your patients opt for intense surveillance?

ANSWER: Almost all of them, just like the ___ that I showed you from the internet, will have ovaries removed, mastectomies, etc in due time- the question is when. Women who have had their children- it’s not too difficult to convince them under laproscopy to have them removed. Ovaries are fine, but breasts are a different story- there is a tremendous emotional attachment which we respect. On the other hand, we have a whole group of women who don’t have this gene, who are taking their breasts off- this has been written up in the New York Times- some who are taking them off barbarically for no reason!

QUESTION: For women in your intense surveillance program, do you have psychological counseling available to them?

ANSWER: Yes- blessed to have a very strong group of people who work with these patients to talk to them and work them through. Remember it’s not just the patient- it’s children, brothers, sisters- and you saw on the slide, not everyone wants to be tested! The answer is yes.

QUESTION: Considering the fact that most women our age won’t have their ovaries removed, why would we get tested before we have children? Why not just wait till we have children?

ANSWER: I’d love to have my daughter answer the question- this is my daughter who is 21 years old and opted to be tested. STACY: We went to a genetic counselor and she basically sat down with us an explained almost everything the genetic counselor here explained- my mom was like, maybe you shouldn’t get tested till after you have kids- we both agreed together; me and my sister don’t’ think it will emotionally affect us SO much at this point. My sister did test positive; I tested negative – she’s 24- bittersweet- I know that my sister is going to start being tested, yearly MRIs and mammographies each year- I tell people from experience if you have someone in your family who is positive, get tested for it- it is a decision to make amongst individuals. For me and my sister, I have supported my sister and my mother- it was a decision we made within a month’s time- she is at an advantage- she is allowed to get that extra screening that I am not able to receive.

DR. WAINTRAUB: Couldn’t have answered that any better. Normal woman gets started at age ____ but with her sister, we’ll start her at age 25. But look what happened- Anne’s mother had cancer at 60, when Anne got it at 50, 10 years before, so we need to worry about Jaimie 10 years before, probably around 40. I have patients who don’t want to know- I give out referrals all day long; most patients throw them in the garbage. The young girl who died whom I have never recovered from- 20 year old girl who was pregnant from Monsey- and when I told her to get cancer the mother said absolutely not, and the Rebbe said no. Knowledge will help people- R’ Willig is right.

AARON: This is going to be our last question- any other questions you can approach the speakers.

QUESTION: In other discussions, we discuss about predetermined genetic- in vitro- that hasn’t been discussed at all-

GENETIC COUNSELOR: IVF is usually used for people who are unable to conceive spontaneously and conception takes place in a laboratory – pregnancy takes place in the usual manner. PGD is to say that we are aware that one or both members of this couple have a genetic mutation and would like to avoid having a child with this mutation. So if your question is can PGD be utilized to hopefully avoid having a child with that mutation (BRCA) and the answer is yes.

QUESTION: In that case- get tested and then don’t have kids who have it! Doesn’t that sound more like-

ANSWER: Certainly sounds like an option- reasonable strategy for one person’s situation, not for all people.

*

Thank you.

11 comments:

nmf #7 said...

That was fascinating- thanks for typing it all up Chana!
(It's not the first one I've been really impressed by- but the first I've commented on.) Thanks.

YU pre-med student said...

Chana,the content of this presentation is very useful. Thanks for making the time to attend the conference and posting your wonderful notes for your readers. You are truly amazing!

Joshua said...

very helpful and clear.
'venishmartem meod lenafshosachem.'

Aaron said...

Chana, thank you for the notes. I asked my female relatives to read these notes as well.You have a very effective way of imparting knowledge via your blog(let alone The Observer). Hope the Medical Ethics Society Staff(which you are a part of) appreciates all your hard work!

Stern student said...

Chana,this was a great, extremely informative and useful read. Thank you so much.

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