Monday, October 7, 2013

notes from HBOC conference


Young carriers from A-Z =Part I

·       Genetic testing ( Cynthia Hadford)

o   Genetic counselling is for interpretation, information, and support

o   Try to figure out where you sit on the scale of risk

o   Determine risk factors, and if you would benefit from information of test results

o   6-8 weeks for test results to come back

o   Suggest doing a “Pro” “Con” list when deciding about testing

o   Asking yourself am I ready to know this information, is it a good time?

o   When coming to see and genetic councillor bring questions, personal support, and accurate family history.

·       Surgical menopause ( dietician from the Grey nuns Hospital)

o   80% reduction in cancer risk with ovaries removed

o   50% reduction with breast cancer risk when tubes and ovaries removed.

o   Most common menopausal health issues: heart health, brain function, bone health, depression, anxiety, moodiness, dry vagina, hot flashes, night sweats, memory issues.

o   Surgery procedure: 3 day recovery in hospital can be done laproscopically abdominally, or vaginally. 3-8 weeks out of work, light bleeding (like menstruation) for 6 weeks, NO sex for 8 weeks, there is an immediate rollercoaster of symptoms, due to the abrupt onset of menopause.

o   Estrogens role in body parts: brain, bone, heart, liver, uterus, vagina, ovaries, eyes, bladder

o   Hot flashes can last up to 3-4 years

o   Managing symptoms can range from lifestyle changes ( dressing in layers, having access to fans) all the way to HRT (hormone replacement therapy).

o   With hormone therapy it is less harsh on the body because it only replaces 1/10 of the estrogen in the body, not the complete array of hormones that the ovaries provide.

·       Personal story

o   Young women lost almost all the women in her life, assumed that they were BRCA, did the surgery’s and found out later that she didn’t even carry the gene, her story was brief but she encouraged us to find her during one of the breaks and speak about her unique perspective.

·       Insurance (broker from Calgary)

o   This lady was not specifically geared for hereditary issues but she said she is the middle man between us and the medical over writers of insurance companies.

o   Doing a trial application is the first step. It’s a lot worse to be rejected in full application than a trail one

o   See your insurance brokers, no banks for information and discussion about insurance options.

o   They deal with all sorts of insurances; life, critical, disability, long term care, etc.

Young carriers from A-Z =Part II

·       Fertility options (Dr. Motan)

o   300,000 oocytes at puberty

o   1000 at menopause

o   Ovulate 300-400 in life

o   Cancer therapy destroys eggs, creates mentral irregularty, causes acute ovarian failure, pre-mature ovarian failure/insufficiency, if done before 35 yrs old 50% will resume regular menstruation

o   Fertility preservation

§  Tissues, drug induced, shielding ovaries, moving out of the way

o   S1P

§  Rising star in preservation of ovaries, drug in animal trials

o   Chemical menopause

§  Decrease cell death, decrease in the blood vessels to the ovaries, potentially could protect stem cells (Could become anything in body)

§  $300-400/month

§  More protective in less than 40 years old

o   Freezing

§  Embryo’s, mature eggs, ovarian tissue, primordial eggs

§  Not as beneficial over 35 yrs old

o   Verification

§  -2000*C/sec freezing, creates “Glass”

§  99% survival rate

§  2-4 weeks to stimulate ovaries for IVF (in-vetro fertilization)

§  Two options to harvest eggs; natural cycle (no drugs) or GnRH antagonist cycle (the natural hormones that creates reproduction cells)

o   Egg freezing

§  >60% success rate, 7 days to mature eggs

o   Ovarian tissue freezing

§  $30,000 or more for procedure

§  9 centers in North America

§  The grafts lifespan is 6-84 months

§  Laparoscopic removal of ovaries

§  Grow the eggs in the forearm, away from any radiation to the areas.

o   Stem cells

§  Stage of development into any cell in the body

§  Can be cultured to become ovum’s

o   Facts:

§  Pregnancy protects against cancer

§  IVF cycle costs: $5,500-7,000/ round

§  Freezing embryo’s cost: $900

§  Embryo cryopreservation cost: $600

§  Sperm donor cost: $1,000

§  BRCA has shown no increased risk with doing IVF cycle to gain ovums.

·       Naturopathic medicine and diet (Calgary naturopath)

o   Uses info from Chinese medicine, herbs, and iodic medicine, to treat disease

o   Disgnosis based on energy

o   Back in the day teeth were considered a ststus of health, it was well known not to eat “white man food”

o   Tea is served before meals in oriental restaurants to improve digestion

o   Meat is best digested when under cooked

o   Do not reheat food= 40% decrease in nutrients when food is going cold, eat it hot.

o   Over cook beans and grains

o   Double cook to decrease the gasses that you get from grains and beans.

o   Soak beans, nuts, seeds for better digestion, les gas aswell

o   Cook with spices, relax the digestive system, relax the reproductive organs as well

o   Variety is the spice of life… don’t cut things out completely because you will develop a sensitivity to the change

o   Ideal meals; large breakfast, smaller lunch, minimum supper

o   It was well known in ancient wold that the engagement period between the weddings was used to feed the bride/mother organs of animals so her children were strong. That is how they survived weakness did not survive.

o   Use lots of colourful foods in your meals

o   A reason to live…live longer!!!

Expert panel

·       Dr. Capstick

o   Good news:

§  Allard high risk clinic at Lois Hole hospital

o   Bad news:

§  The name should really be HBFTOCS Hereditary breast and fallopian tube and ovarian cancer society…not HBOC anymore lol.

§  Breast cancer is the 2nd largest killer of women ( first is lung), 5th killer is ovarian, no data for fallopian tube cancers, why? Because the pre cancers start on the fallopian tubes.

§  Probably going to discuss the removal of the tubes as prophylaxis

§  Unfortunately not enough data to support this!!!

o   Pending news

§  HRT=> debates to decide on the topic…getting close

§  Women who are BRCA previvors are reasonable candidates for the HRT is control of symptoms of menopause.

§  Women who HAVE HAD cancer  comfort is in ER- cancer survivors to use low dose estrogen

§  Triple negative cancers are already at high risk of reccurance so HRT is not recommended.

·       Dr. Krause/Dabbs

o   Clinic

§  Consists of the nurse navigator Shelly

§  Pharmacist

§  Booking clerk

§  Dr. Krause and Dabbs

o   Goals for clinic

§  Get all done, one stop shop radiology and clinic visit all in one, with no wait for results.

o   Serving 550+ patients

o   Screening available through clinic

§  Breast MRI

§  Ultrasound

§  Mammography

o   Funny saying “fallopian tuba” a “tuba ligation”

o   PARP- the newest jump to determining the way to personally treat cancers at a genetic level, still in tria stage.

·       Dr. Mehling

o   Immediate reconstruction push though BRA day awareness, it is $$ cost effective, preferable for young women especially, easier ( less of a scar), more aesthetically beneficial.

o   Better training available now to do the immediate reconstruction

o   Tools and option available

o   Alberta and Sask are only two provinces that don’t have a “collaboration immediate reconstruction” two riches provinces are where are the only ones who don’t have it, what is our excuse?

o   Present a solution not just a problem… You can help by comeing to BRA day Oct 16, 2013 at Tom Baker Cancer center auditorium 5-7 pm Rm# CC104

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