Summery of force 2011

Summery of FORCE conference 2011:

WE arrived a day early so we could explore the area; it was defiantly a beautiful place full of exotic plants, luxurious restaurants and a pool that gave the illusion of being stranded on an island paradise. The conference began with a welcome reception of the first year attendees, not much networking happened there but the opening wine and cheese (desert) was our first interaction with the FORCE crowd. We met some very interesting people from all corners of the states. We discussed the experiences we’ve had, and testing process, and got into some compare and contrast about differences between Canada and the states. We literally closed the party being the last ones to leave; there were promises of running into each other the next day.

The conference networking breakfast was very interesting; upon entering the hall we had to grab beaded necklaces to correspond with the BRCA status, previvor, and survivor, how long we’d been survivor for, if you were a counselor or if you were not tested. These beads were to begin the conversations at the tables. Gayla and I started off at the Canadian table where I was bombarded by a lady from Ontario who was almost jamming surgery down my throat… I can’t say I appreciated that. But then we moved over to the young previvors table where I was brought to the scary reality that 22 is not young for surgery…in fact a couple of the girls were in contact with friends who were in the end stages of reconstruction after mastectomy. This frightened me, and I managed to keep my stand strong that my children would come first then surgery. I bragged about Gayla being a miracle and a sign of strength for me to follow. I also was very proud to share that I had good supports with my significant other, where the going trend was that lots of these young girls are wondering how being BRCA will affect any relationship they may pursue in the future. I felt fortunate but also empathetic for these young people who feel that they are undesirable. Those made me feel a burning passion to make self esteem and maybe even sexuality a topic for young women’s program.

The sessions that I attended sounded very promising and on the hole most of them gave me very good insights and ideas, but some were very repetitive with their information. I felt very distraught at times when all these technologies are being utilized in the states, and no one was able to tell me if Canada was using these and were they were or if in fact Canada was really that behind. This drove deep that we as Canadians need to lobby for the funding and resources for specific services such as breast MRI, digital mammography, reconstruction techniques, and fertility technologies such as embryo freezing and ovum freezing. These are important especially for the younger people who are cursed by dense breast tissue and because of this early detection can be difficult and loss of fertility is a common worry.

The first session I attended was how to communicate with families; in this session I hoped to gain some insight into how to tailor a conversation to get the point across and yet not sound doom and gloom. It was a eye opening experience for me because by the end of the session I realized that I had gone about the disclosure piece to my father in such a wrong fashion that that could very well explain why he’s reacting the way he is. The session outlines that there are many reasons to communicate the ones outlines in the session were:

• Influence accuracy of family history

• Conflicts raised/resolves related to emotional stress (adds to the stress)

• Difficult issues (eg learning their status as the result of another)

• Informed choices/decisions

They also mentioned some points to ponder about how to disclose the information based on a few factors;

• Are important events shared in a single event usually in the family or slowly over time

• What is your relationship with the person(s) that you are planning to speak with (if there is a poor relationship then the disclosure shouldn’t be as in depth or if very damaged maybe disclosure is undesirable to provide to the person)

• Do you decide to disclose in stages (once you know something you can’t unknow it!)

The group then discussed the steps to take, where to start your disclosure:

• The recommend starting with objective information

o Explain the results in plain language (one of the councilors from the states said that once you get your results there is a fill-in-the blanks letter that you can send out to your families giving the facts and only the facts, and opening the door for them to do something about it or not)

o Then provide personal risk factors of the gene

o The person’s risk

o Education on risk reduction measures and what you have chosen

• The provided some tips on things to consider when you plan your speech

o One size doesn’t fit all, make a couple versions for different levels of understanding different relationships, and anyone who might be directly affected

o K.I.S. keep it simple

o Use resources: print media, videos, counselors, Dr’s, websites, etc.

o Share your opinion only if asked

o Think of how you usually communicate about hard topics

o Concerns for privacy within and out of family. How do you guard yours and other people in your family’s privacy

o Style/circumstances of the teller (are you’re the main caretaker or the shit disturber)

o Style/circumstances of the receiver (eg strong figure head)

o Style/circumstances of the relationship (emotional distance, not close, trying to bridge over to the other person)

o Have a script, and practice it

• The group provided some questions to ask yourself on “Who do you tell?” and what are the key factors in determining who is a good person to tell;

o In the states there is a legislation that protects employees from being discriminated against by their employers based on genetic status luckily we don’t have that issue, but it is good to think about work if you should disclose to your boss, do they really need to know?

o Various family members, how will they be affected by the status

o Variations of knowledge about genetics, got to make sure everyone is at the same understanding, tailoring the status to a way they can understand

o Levels of education…will they understand (eg children or younger siblings)

o Has there been a recent loss in the family will this add to the emotional stresses

o Priorities of that family member (young person to young person or )young to older person) this could be the difference between talking to an aunt who’s had her children or your cousin who is your age or a bit older that is just finishing school or just found a boyfriend.

o Needs and limitations of you and the person you tell (eg am I telling you this because I want your support, or just a need to know. Do your need info, who would add stress to the situation. Is there a risk for that person, would be stressed by this uncertainty, would they go with you?)

o And of course prepare yourself for both situations if your positive vs. negative

• Asking yourself how much they know can open some doors as to how to approach the topic:

o Did they know before you went for the test

o Do they know their risk

o Is there interest in knowing

o And leaving the door open is a great way to

• “To change the shape of a piece of granite there is two ways; you can use a hammer and chisel your way through it, or you can use water to slowly wear away the layers to get the shape you want?”

The second session was the “Networking young women’s group” here I thought we’d cover how to network young people. Instead we had a round table discussion about what it means to be BRCA, undetermined, or what are some of the barriers to getting tested and we also had a few people describe how nervous they were about losing their breasts and how that would affect the “boob men” in their lives. It was all very interesting I was shocked that I was the only Canadian in the room, and so some of the fears were unrealistic for me, this in part due to the young ages of mastectomy reconstruction patients in the room, I’d say 30/45 of the girls have had or are going to get this procedure done in the next couple months. There was however a very good suggestion brought forth about how to bring up BRCA in an early blooming relationship; the question was how you do this without freaking someone out. The answer was genius, telling them right before your screening so that they know where you’re going, why you’re going and what they can do to support you after the testing is done and waiting for the all clear. This opens the door for them to ask questions and have something tactile that they can do.

The other neat thing that came up was about the BRCA sisterhood on facebook, open to all nations.

The third session I attended was high risk surveillance for breast cancer in this group I found out some really neat statistics and discovered a research project that I had studied in school of all things;

• >20-25% of high risk women should have MRI in addition to mammography

• The speaker spoke about SNP combinations to study which gene combinations would benefit from which screening techniques

• Breast density according the speaker determines risk of the patient; high density is risky because it can be difficult to see through and small tumors can be missed

• Clinical breast exam is important even if the mammography and MRI were clear

• Mammography 80-94% sensitive

PRO CON

-fatty breasts great screening

-ductal carcinoma detection

-picks up calcified in-situ disease -poor for dense breast tissue

-can’t detect triple negative breast cancers

-ionized radiation levels



• MRI

PRO CON

-high sensitivity

-rules out disease -may develop contrast allergy

-counterproductive for renal patients (contrast can’t pass through)

-non-specific

-false positives

-anything vascular will light up

-shows anything less than 5mm which could be enhancing foci



• Ultrasound

PRO CON

-quick

-no weight restriction

-accommodate claustrophobia’s -false positives

-cant cover all of breast

-not as sensitive

-better for specific areas

-takes a long time



Some of the new technologies:

• Biomarkers to differentiate significant and minimal risk cancers (personal medicine)

• Digital mammography

• Thomsosythnthesis- 3D picture of breast use in the same manner as mammography to prevent false positives

• Photon counting-microdose technology (sectra)- provides high quality picture with ½ the radiation exposure

• Automated breast ultrasound (ABUS)- 3D ultrasound

• Termography- uses heat sensors to find large cancers

• Molecular breast imaging- inject radioactive traces to observe tissue

• PEM positron emission mimeograph- gives multiple pictures of the breast

• Breast CT- contrast injection

• Personalized imaging- only using the most effective scanning for your risk, use of SNP’s

The tips for doing self breast exam:

• Do it like a dude would

• Move tissues around

• If you can feel it through a t shirt then it’s probably there

• If it doesn’t move that’s a sign that it need further intervention

Fun fact metformin a drug used to control glucose (body sugar) has been show to have remarkable effects on young women’s cancers, which have been shown to be sugar loving and feeding.



One of the major things about the screening is the radiation dose and how that can be harmful in it self



Fourth session was a large group discussion about some facts and statistics: the first thing they spoke about was the stats on surgical risk reduction I was amazed to see that;

• Prophylactic oophrectomy at 35-40 had the best rate of cancer prevention, reducing the risk to 60%

• One year of tomoxofen has shown to be effective prevention for breast cancer, basically decreasing the circulating estrogens

• After first ten years there was notable differences in recurrence deaths from non surgical and lumpectomy patients to those who had a mastectomy who showed no death from recurrence

Another topic briefly covered was PARP inhibitors:



DNA is double stranded by nature, but without BRCA 1 or BRCA 2 some cells cannot stop replicating so PARP is the backup plan that stops the single strands that form of the original DNA.

Genetic mutations only affect 1 strand Cancer needs 2 strands.

How our DNA can be damaged:

• Spontaneous injury (hurt yourself)

• Uv light

• Chemicals

• Radiation

• Chemotherapy

• Additives

Either a cell dies or repairs itself, BRCA 1&2 are gate keepers for correct repairs. PARP (poly-ADP ribose polymerase) is an enzyme that decorates (marks as needing to be destroyed)

The Fifth session was Young previvors: emotional issues; I was actually able to record most of this session on my video camcorder, just in case there was an opportunity to show it at the HBOC conference. I have yet to see how the audio quality is.

• Previvors has become the new buzzword for a person who has not had cancer but is going through the motions to prevent it. There is actually an app for the iPod that is dedicated to previvors.

• The thoughts that run through a previvors mind is not “if” they will encounter cancer it’s “when.” Fears that cancer will not be found early

• This generation is the 2nd generation of testers; it affects us different than our mothers, sisters, aunts, fathers, and other relations. We have so many more choices and all of them have a ting of fear attached to them.

• But we have see enormous efforts to be proactive

• Medical management @ 25yrs:

o Mammography

o MRI

o Monthly breast exam

o Clinical breast exam

• Ovarian cancer @ 35yrs

o Transvaginal ultrasound

o Blood test

• Risk reduction

o Birth control

o Hormone therapy

o Surveillance

o Surgery: oophrectomy and mastectomy

• Chemoprevention

o Affects childbirth

o Not much data with gene carriers, prevent estrogen receptor negative (ER-) cancers were BRCA carriers are estrogen receptor positive (ER+) cancers

• Romaic relationships and partner support:

o Young women disclose their status, but worry about anger/rejection

o The “time frame bump-up”

o The having to grow up faster

o Issues around whether their partner will find them desirable or how their sexuality will change

o Fertility and family life with surgery during childbearing years

o Options for fertility:

 Adoption

 Sperm sorting to have a child with less cancer risk

 Preimplantation: picking only BRCA free ovum’s and sperm

o Problem:

 Not much professional support for dad’s, husbands, partners, best friends, grandparents, mom’s, cousins, etc.

• GINA: this is a legislation that prevent discrimination against those with genetic mutations

The sixth session I attended was Fertility options: in this session the speaker decided to just have a round table discussion about the concerns that women and men had for their fertility:

http://jco.ascopubs.org/content/28/2/240.short this is one of many papers describing the premature menopause that BRCA brings.

http://www.uscfrogs.org/documents/ProphylacticOophorectomy.pdf prophylactic oophrectomy for BRCA 1 &2 carriers

Facts shared by the speaker:

• When someone is treated with chemotherapy it attacks there ovum’s and as a result the woman could become infertile…chemotherapy attacks rapidly forming cells and unlike men women only have select few, they don’t make more

• When there is radiation treatment for pelvic cancers sometime they will raise the ovaries up higher in the pelvic cavity and prevent them from getting exposed to radiation therapy.

• On of the measures to save the ovaries is by down regulating the ovaries with LUPRA a drug that makes the body believe that there is no more eggs therefore an artificial menopause occurs

• There is both egg and embryo freezing, better results with embryo freezing

• But in order to get a sum of maybe 6-10 ovum’s you’ll have a load of estrogen which in itself could be dangerous

• BRCA women have premature ovarian failure and premature menopause

• 70% will go through treatment and not know that they could be infertile and menopausal

• Don’t respond to fertility drugs as a BRCA+ person

• Ovaries age faster in BRCA women

• Ovarian tissue freezing…..very experimental

• Timing is an issue in this day and age women are putting career first

• Single parents: this could be an option having a sperm donor

• Oldest implanted successful frozen embryo was 50yrs old

• $10,000-15,000 for this procedure

• Ovarian reserve testing to find out how many childbearing years you have

A researcher of this phemonenon Kutluk Oktay, M.D

Kutluk Oktay, M.D. is a professor of Obstetrics & Gynecology and the director of the Division of Reproductive Medicine & Infertility at New York Medical College. He is also the medical director of the Institute for Fertility Preservation at the Center for Human Reproduction in New York City (www.fertilitypreservation.org). Dr. Oktay is a pioneer in the field of reproductive medicine and infertility and in fertility preservation.

After earning his M.D. degree at the Hacettepe University School of Medicine in Ankara, Turkey, he trained in internal medicine at Marmara University Medical School, Istanbul, Turkey, and Cook County Hospital, Chicago, Illinois. He then completed his obstetrics and gynecology residency at the University of Connecticut Health Center and subspecialty training in reproductive endocrinology and infertility at the University of Texas Health Science Center at San Antonio. Dr. Oktay was then awarded a fellowship at the University of Leeds Assisted Reproduction Unit in England.

Dr. Oktay developed and performed the world’s first ovarian transplantation procedures with frozen-banked ovarian tissue and has invented novel ovarian stimulation protocols for cancer patients undergoing embryo and egg freezing. Dr. Oktay has recently received a research grant from the National Institute of Health to study the impact of chemotherapy on ovarian reserve and was invited to the President’s Cancer Panel as an expert on fertility preservation. In addition, he is the co-chair of the American Society of Clinical Oncology Committee for Fertility Preservation Guidelines for People with Cancer. Dr. Oktay has also conducted key work on the early stages of ovarian follicle and embryo development, as well as on controlled ovarian stimulation and in vitro fertilization.

Another website to check out http://fertilefuture.ca/ Canadian centers listed

Dr. Oktay has published over 80 articles and book chapters. He gives lectures around the world and has been recognized with numerous scientific and clinical awards. He has been named one of the top doctors in the U.S. and in the New York metropolitan area. "What Breastcancer.org offers is outstanding," says Dr. Oktay, "and I am honored to be able to contribute to this extremely helpful resource."

• Fertile hope website http://www.fertilehope.org/ is a resource to see what your risk for infertility is (moderate risk for BRCA)

• Getting blood testing of your hormones especially FSH (follicle stimulating hormone) which allows for the premature eggs to mature and be ready to fertilize. Have a professional around to interpret the results

• The speaker mentioned a researcher from McGill university who is finding very promising things out about ovarian reserve testing.

Drugs:

• The main source of estrogen is the ovaries in premenopausal women, while in post-menopausal women most of the body's estrogen is produced via the conversion of androgens into estrogen by the aromatase enzyme in the peripheral tissues (i.e. adipose tissue like that of the breast) and a number of sites in the brain. Estrogen is produced locally via the actions of the aromatase enzyme in these peripheral tissues where it acts locally. Any circulating estrogen in post-menopausal women as well as men is the result of estrogen escaping local metabolism and entering the circulatory system.

• Raloxifin- (evista) is an oral selective estrogen receptor modulator (SERM) that has estrogenic actions on bone and anti-estrogenic actions on the uterus and breast. It is used in the prevention of osteoporosis in postmenopausal women. raloxifene was as effective as tamoxifen in reducing the incidence of breast cancer in postmenopausal women at increased risk. A major adverse effect of tamoxifen is uterine cancer; raloxifene had fewer uterine cancers. Tamoxifen increased the risk of cataracts, but raloxifene did not. Both groups had more blood clots in veins and the lungs, but that side effect was more common with tamoxifen than raloxifene.[

• Tamoxafin- is in a class of medications known as antiestrogens. It blocks the activity of estrogen (a female hormone) in the breast. This may stop the growth of some breast tumors that need estrogen to grow.

• Exemetane –(trade name Aromasin) is a drug used to treat breast cancer. It is a member of the class of drugs known as aromatase inhibitors. Aromatase is an enzyme that synthesizes estrogen. Aromatase inhibitors block the synthesis of estrogen. This lowers the estrogen level, and slows the growth of cancers.

o http://www.theglobeandmail.com/life/health/new-health/andre-picard/drug-exemestane-can-cut-risk-of-breast-cancer-among-high-risk-women-study/article2047548/

The final session that I attended was How I decide: in this session there was some overlap with other sessions but overall very good info the areas that they stated were the most common brain teasers were:

• HRT (hormone replacement therapy)

• Testing other relatives

• Screening vs. surgery

• Children yes or no

• What to tell and who

• Tram/sparing/DEEP/ or implants

Make sure you have informed decision; don’t leave home without them

3 levels

Cognitive level- collects info and relevant facts

Emotional level- history, emotions, family, and life plans

Post-decision level- living with it, coping strategies, support systems

What you may encounter:

Having to tolerate uncertainty, make imperfect choices, time pressure, stress pile up, but through it all remember to focus on yourself.

Partner involvement in tough decisions:

• Body ownership (is it mine or ours)

• Shared physical space

• Child bearing plans

• Helplessness of the partner….loss of control

Mensh test “of course I’ll love you no matter what you decide”

• May be hard to believe even if it’s true

• Doesn’t allow room for doubts and sadness

• Safe space to share



Physician’s recommendations:

• Those who followed the Dr’s order were the ones who tend to regret their decisions. Dr’s don’t like to lose people so they may sway your decisions, exclude them from the choice.

Social supports

• The closest supports may be affected by your choice

• Find a neutral person

• “bookending” talking to someone immediately before and after.

• Those who choose not to confide in others tend to fall into a depression

Limitations

• Death is the impossibility of other possibilities

• Decisions closes off alternatives

• Mortality stimulates anxiety

The idea of a white hoarse rescue

• The thought that someone will rescue you, it can be hard to lose that fantasy

GOOD ideas:

• Clear goals

• Adequate support

• Knowledgeable

• Informed not overloaded

BAD ideas or signs:

• “Just tell me what to do”

• Intranet overload

• Preoccupation with small differences

• Numbness/indifference

• Excessive crying/anxiety

• No one to confide in