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Archive for April, 2011

June

I am attending FORCE’S 6th annual conference in Orlando, Florida in June. I must admit that is something that keeps me motivated and distracted from all that is going on.

I can’t wait to meet up with all the wonderful woman I met last year and some new ones that are going this year. How life changing is it going to be for someone to experience such a place of knowledge and non judgement.

http://www.facingourrisk.org/

Is it June yet!!!

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I

I am so tired right now that I can barely speak let alone think! busy weekend catching up with family and friends, 2 birthday parties and 3.5weeks post op from reconstruction for the second time…

I really don’t have anything to say today!

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Hope

I hope a cure is found for all cancers

I hope that my children don’t have the BRCA gene

I hope I get to see my children grow up

I hope I get to see my friends and family grow old

I hope that the world finds peace

 

 

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The majority of breast cancers are described as sporadic because they develop spontaneously in an individual after the chromosomes in a cell are damaged by external factors such as radiation or chemical exposure. This damage allows the cell to multiply in an uncontrolled way. Further defects in the bodies regulatory systems must also occur to allow the cancer to grow and spread.

5% of breast cancer is thought to be due to an inherited abnormality. In these cases an abnormal gene has been passed on from the parents. This inherited abnormality means that the first step in the process of cancer transformation is already entrenched in the cell and therefore cancer is much more likely to develop. There are presumed to be many genes involved in the development of cancer. 2 specific genes have been identified that increase breast cancer risk. They are referred to as BRCA1 and BRCA2, and were first discovered in the early 1990s. Both of these genes code for proteins that are normally involved in repairing damage to the DNA of the cell and thereby stopping cancer from forming. If someone inherits an abnormal gene then this protein is defective and cannot do it’s job properly. There is consequently a much higher risk of breast and ovarian cancer in people with this abnormality. Tests can be performed to identify these genetic abnormalities in women who have a strong family history of breast and/or ovarian cancer.

when to consider testing:

  • 2 or more first or second degree relatives with breast or ovarian cancer plus:
  • Additional relatives with breast or ovarian cancer.
  • Breast and ovarian cancer in same person
  • Bilateral breast cancer
  • Breast cancer in a male relative.
  • Breast cancer diagnosed before age 40 years.
  • Ovarian cancer diagnosed before age 50 years.
  • Jewish ancestry.
  • Member of family with confirmed BRCA abnormality.
  • Note: A first degree relative is defined as mother, sister or daughter.
  • A second degree relative is defined as aunt, nephew, niece, or grandparent.

Referral: (NZ ONLY)

 

The Regional genetics service has offices in Auckland, Wellington and Christchurch.

Cost: free

The first step is an interview to collect details of the family history.

There will also be discussion about the implications of testing. This will cover questions such as:

  • Do you actually want to know that you have a very high risk of developing a potentially fatal disease?
  • How will your family react to this information?
  • Will it create anxiety for other female family members?
  • What about testing children in the family and discussing this risk with them?
  • Will there be implications for future medical insurance or job applications?

Once a decision is made to proceed the process of genetic testing is complex and costly. The general approach is to first test an affected family member as the chance of finding an abnormal gene is higher in these individuals.If they test positive then other family members will be offered testing.

A blood sample is sent to an Australian laboratory. It may take 4- 6 months to get a result.

If you test positive you will be given options

Surviellance: your medical team will monitor you closely to make sure there are no changes, regular CA125 tests will be carried out as well as ultrasounds, mri’s and mammograms

Prophylactic Tamoxifen: is thought to reduce risk of getting breast cancer by 30 – 50%. It is associated with a range of side effects ranging from hot flushes to increased risk of endometrial cancer and deep vein thrombosis.
Prophylactic oophorectomy (removal of the ovaries): In premenopausal women this procedure has a similar benefit to Tamoxifen in terms of risk reduction and also avoids the need for ovarian surveillance which is at best imprecise and unreliable.

Prophylactic mastectomy and breast reconstruction:
This is a big operation, but available data suggests that it may reduce risk by up to 90%.

Please note: I am not a medical professional, only speaking from experience.

 

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FORCE (Facing Our Risk Of Cancer Empowered) is a non profit organization very close to my heart. I was frustrated and lonely when I couldn’t find a support network in New Zealand and was both relieved and overjoyed when I found FORCE. http://www.facingourrisk.org/

Last year I was lucky (which is really an understatement) to receive a scholarship to attend the annual conference in Orlando, Florida. Never in my life have I felt so understood, and part of something so wonderful. It actually changed my life, it helped me understand, it helped me acknowledge, it helped me accept and it certainly empowered. I was among hundreds of woman just like me. None of us were “different”, we shared, we laughed, we cried.

I wanted to share the experience, I wanted to help be a support, I wanted to help spread the word, so when FORCE branched out and started up international support groups, I very eagerly took on the roll for coordinator in New Zealand.  http://www.facingourrisk.org/FORCE_community/local_groups/int-newzealand.php I will never forget the first support group meeting, the feeling of being able to help, to share and to let people know they weren’t alone and didn’t have to be.

I am going back to the conference this year, this time as a speaker on the international experience,  I feel overwhelmed with emotion when I think of all the good that FORCE does and am so happy to be even just a little part of that.

But FORCE wouldn’t exist if it wasn’t for one extraordinary woman named Sue Friedman.

Dr. Sue Friedman was practicing small animal medicine in south Florida in 1996 when she was diagnosed “out of the blue” at age 33 with what appeared to be sporadic breast cancer. At the time, she was unaware of any familial risk factors for hereditary cancer. After her treatment, however, Sue realized from an article about hereditary breast cancer that she had several indications for a mutation. She pursued genetic counseling, and in 1997 she tested positive for a BRCA2 mutation.

Shocked that her health care team didn’t alert her to the possibility of being at high risk, and disappointed at having to make critical treatment decisions without knowing of her mutation, Sue acted so others could benefit from her misfortune. She founded FORCE in 1999 to fill the information void for individuals and families with hereditary cancer, and to help them advocate for themselves. Under her direction, FORCE has grown into the de facto voice of the hereditary breast and ovarian cancer community, filling the unique and unmet support needs for those who are navigating risk management and treatment decisions.

With FORCE, no one needs to face hereditary breast and ovarian cancer alone. After five years as the organization’s executive director and maintaining her own busy practice, Sue left veterinary medicine to direct FORCE full-time. Since then, the organization has established itself as an unequaled source of research, advocacy, support, and information regarding risk management, prevention, and awareness. In 2004, Sue relocated her family and FORCE headquarters to Tampa to work more closely with researchers to improve options and care for high-risk women.

Sue is my hero…..

 

 

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I had my ooph in July 2009 and my “womanhood” Doctor refused me any form of HRT, with being BRCA+ she wouldn’t allow the risk. So after I had my mastectomies, I went back to her and said “what about now”? I’ve almost zeroed the risk of breast cancer and would really benefit from some sort of Estrogen. I had researched studies so it wasn’t like I was going into her office and saying “oh I had coffee with so and so the other day and they said Estrogen is the latest fad”! Her answer was still the same….NO, but she offered some alternatives, like herbal or antidepressants….

So I have asked to be referred to a “menopausal specialist”…

How do we manage the side effects of  surgical menopause?

The side effects of oophorectomy may be alleviated by medicines other than hormonal replacement. Non-hormonal biphosphonates (such as Fosamax and Actonel) increase bone strength and are available as once-a-week pills. Low-dose Selective Serotonin Reuptake Inhibitors (e.g. Paxil, Prozac) alleviate vasomotor menopausal symptoms, i.e. “hot flashes”

In general, HRT is somewhat controversial due to the known carcinogenic and thrombogenic properties of ESTROGEN however, many physicians and patients feel the benefits outweigh the risks in women who may face serious health and quality of life issues as a consequence of early surgical menopause. The ovarian hormones estrogen, progesterone, and testosterone are involved in the regulation of hundreds of bodily functions; it is believed by some doctors that hormone therapy programs mitigate surgical menopause side effects such as increased risk of cardiovascular disease, and female sexual dysfunction.

Short-term hormone replacement with estrogen has negligible effect on overall mortality for high-risk BRCA carriers. Based on computer simulations overall mortality appears to be marginally higher for short term HRT after oophorectomy or marginally lower for short term HRT after oophorectomy in combination with mastectomy. This result can probably be generalized to other women at high risk in whom short term (i.e., one- or two-year) treatment with estrogen for hot flashes, may be acceptable.

So I await eagerly an appointment (and second opinion) this is such a controversial topic, I know and everyone has their opinions (and I am not a medical person)…

For now I live without Estrogen….

 

 

 

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Depression

Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behaviour, feelings and physical well-being. It may include feelings of sadness, anxiety, emptiness, hopelessness, worthlessness, guilt, irritability, or restlessness.

Depressed people may lose interest in activities that once were pleasurable, or suffer cognitive impairments (difficulty concentrating, remembering details, or making decisions). They may contemplate or attempt suicide. Their weight may change dramatically. Insomnia, excessive sleeping, fatigue, loss of energy, or aches, pains or digestive problems that are resistant to treatment may be present. Depression can cause pervasive problems in an individual’s life through its (often unconscious) changes to behaviour (e.g. a pygmalion effect of expecting poor social performance, and ultimately pushing people away).

I suffer from depression…. It took along time to accept it, even longer to admit it. I believed that my depression was my fault, and I deserved it. It started just after I had my oophorectomy and sucked me into a deep dark hole that I thought would be impossible to get out of, I felt alone and scared.

When I went to my doctor to talk with him about it, he actually said that people were so afraid of the word depression because it made some people feel like they had some sort of disease, and that depression is actually quite common….

How common is depression? It’s very common. One in six New Zealanders will experience a major depressive disorder at some time in their life. It’s more common among females (one in fi ve females, compared to one in eight males). One in seven young New Zealanders experience a major depressive disorder before the age of 24. Depression increases the risk of suicide by 20 times.

what can cause it?

There’s no simple answer to this – usually it’s a combination of things that happen to a person. Research indicates that ongoing diffi culties, such as long term unemployment, alcohol problems, chronic illness, or living in an abusive or uncaring relationship, are more likely to cause depression than recent stressful situations. Sometimes there’s no obvious reason. But certain factors can put you at higher risk. These include: Family • A family or personal history of depression.• Conflict or violence within your family.• Bad things that happened when you were a child• Death or loss of someone close.• Breaking up with a partner.• Falling out with someone you care about.• Traumatic or life threatening events.• Too much pressure and stress at work, school or university.• Feeling you’re being bullied or undermined.• Losing your job or being unemployed for a long time.• Having a head injury or other trauma, epilepsy, or a long term or serious illness. • Some women experience depression during or after childbirth.

If you want to talk to a trained counsellor about how you’re feeling, or you’ve got any questions, you can: • Call the Depression Helpline on 0800 111 757 (New Zealand only) or visit http://www.depression.org.nz

Please know that you are not alone

 

 

 

 

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