BRCA 1 Mutations: Treat Earlier

This latest important research shown in Fred Hutchinson Cancer Research Center News

http://www.fhcrc.org/en/news/center-news/2014/02/ovary-removal-by-age-35-to-reduce-cancer-risk-.html

Ovary removal by age 35 to reduce cancer risk?

Fred Hutch researchers weigh in on new recommendation that women with BRCA1 gene mutation have ovaries removed by age 35

Feb. 26, 2014

By Linda Carroll

Women who have a mutation of the BRCA1 gene can protect against breast cancer (shown) and ovarian cancer by having their ovaries removed by age 35, a new study has shown.

Photo by Science Photo Library / via AP images

Women who’ve inherited mutations of the BRCA gene could dramatically reduce their risk of breast and ovarian cancer by having their ovaries removed by age 35, a new study suggests.
The international team of researchers who followed nearly 6,000 women with BRCA mutations for an average of 5.6 years found that preventive removal of the ovaries, called oophorectomy, reduced the risk of ovarian cancer by 80 percent and the risk of death from any cause by 77 percent, according to the study published in the Journal of Clinical Oncology.
The study also found that women with the BRCA1 mutation were at a much greater risk of ovarian cancer than those with BRCA2 mutations.
“To me, waiting to have oophorectomy until after 35 is too much of a chance to take,” said Dr. Steven Narod, a professor of medicine at the University of Toronto and the study’s lead author. “These data are so striking that we believe prophylactic oophorectomy by age 35 should become a universal standard for women with BRCA1 mutations. Women with BRCA2 mutations, on the other hand, can safely delay surgery until their 40s, since their ovarian cancer risk is not as strong.”
Narod and his colleagues followed 5,787 women with the mutations, some for as long as 16 years. At the study’s outset, 2,123 women had already had an oophorectomy. Another 1,390 received the surgery during the course of the study, while 2,274 eschewed the surgery.
For women carrying the BRCA1 gene, the researchers estimated that delaying surgery until age 40 raised the risk of being diagnosed with ovarian cancer to 4 percent, while waiting till age 50 hiked that risk to 14.2 percent. This is compared to the rate among those who had an oophorectomy before age 40: 1.5 percent.
Experts agreed that the new study underscores the importance of early oophorectomy in women carrying the BRCA1 mutation.
“Until now, our recommendations for prevention of ovarian cancer have been identical for women with BRCA1 and BRCA2 mutations. This study changes that,” said Dr. Elizabeth Swisher, medical director of the Breast and Ovarian Cancer Prevention Program at Seattle Cancer Care Alliance and a professor in the department of obstetrics and gynecology at the University of Washington. “Women with BRCA1 mutations are at higher risk of ovarian cancer in their late 30s while women with BRCA2 mutations have no appreciable risk until after age 40. Therefore, women with BRCA1 mutations should ideally have their ovaries and fallopian tubes removed by the age of 35, while women with BRCA2 mutations can safely wait until age 40.”
There are, of course, downsides to having the ovaries removed. What women find most troubling is the immediate end of childbearing and the early entrance into menopause.
“There are both medical and quality of life downsides from the early menopause,” Swisher said. “I would recommend that women take estrogen unless they have previously had breast cancer.”
‘It’s a very personal decision’
The decision is one that each individual woman has to make with her doctor, said Dr. Larissa Korde, director of the Prevention Center at Fred Hutchinson Cancer Research Center.
“Women considering this have to look at a couple of different things: the risk of ovarian cancer and how  an oophorectomy affects breast cancer risk versus how early menopause affects general health,” Korde said. “You have to consider the side effects [of early menopause] like hot flashes and vaginal dryness, and the effects on bone health and cardiovascular health.”
Earlier oophorectomy might allow some women to keep their breasts.
“If you have your ovaries out there’s a significant protective effect against breast cancer,” Korde said. “If women have not had breast cancer and their ovaries have been removed we often prescribe short term hormone replacement therapy and breast cancer screening. That’s an option some women opt for.”
Ultimately Korde said, “it’s a very personal decision. Women have to deal with what their feelings are, what they’re afraid of, what risks they’re willing to take on and what side effects they’re willing to live with.”
Read more:
To screen or not to screen? Cutting through mammography confusion

PALLIATIVE CARE: An Introduction

I have not forgotten my ovarian sisters or their families.  Our family has been grieving the loss of mom.  My life has been enmeshed with my mom's life for many years, and each moment of joy and pain is equally treasured.  We honored her life last weekend in Colorado, with family and friends from all around the region.  My sweet Aunt said that she felt uplifted at the end. My sister worked so hard on the arrangements, thank you sis.  We chose to share mom's joy, her smiles, elegance and cherished life events.  Her suffering made us stronger.  Now she rests in peace, with God.

As a person with cancer it is important to do all we can not only to learn about our cancer and treatments, but learn about resources that can assist us with our suffering. Palliative care can be an essential ingredient in the complex and everchanging recipe for our care.

My mom had the blessing of speaking with two palliative care nurses a week or so before she died.  They gave her attention, validated her integrity and spoke with and to her as a whole person. They assured her that they were THERE to ease her suffering, and she was so happy about that.

I had asked several years back if the hospital offered palliative care, and at that time they did not.  This service came to her too late, but it is not yet offered as a standard service.  It is still relatively new and if you think you need it, please ask about it.

Indirectly, I believe that mom's primary doctors were offering palliative treatments, but without defining it as such, her treatments were not coordinated. This happens far too often.

Mom suffered great abdominal pain, nausea, fatigue and emotional exhaustion from grappling with the ups and downs from multiple hospitalizations and an overall downward trend in her quality of life.  Plus a critical element, family education, really never happened.  

When an individual is deemed to have chronic pain and suffering from a serious illness, the caregivers and patient need to be on the same page.  To leave the education up to the patient places an unfair burden on them.  The patient may not want to appear needy and the palliative care team knows HOW to educate without undermining a patient's dignity.  How I wish mom had received this help earlier....

Had palliative care been introduced sooner, she may have had an overall better quality of life. Her family would have had support in supporting her better in the way mom wanted.  We all did the best we could, and every life experience is a lesson.  Mom had type 1 diabetes with all the trimmings, she suffered greatly.  In her suffering she still managed to shine a beautiful smile, joyful laugh or deep regard for her loved ones.

Cancer patients greatly benefit from palliative care.  This type of program has the purpose of enhancing quality of life by managing pain, stress and any other major issue inhibiting our ability to live as best we can with our illness. Please go to the lnk below to learn more about this treatment plan and to see if you or a loved one could benefit from this type of care.

Peace and Blessings

http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspxhttp://www.getpalliativecare.org/whatis/

Mom's Obituary I LOVE YOU MOM!

I am so thankful that over the past few years a few of you have taken time to know our mom.  I miss her so much.  I never knew a heart could ache like this.  

I am pasting a link to her obituary.  One day I will see her again.

  Mom, I love you forever.  God rest your sweet soul.

Painting The Heavens

My aunt and sister did such a beautiful job of writing up mom's story, love you!

Feng Shui

I awoke today (Sunday) at 8pm.  I had slept 18 hours, basically straight through except to feed sweet Marilyn and get a glass of water. 

So contrary to the burst of energy felt a few days ago when a Fung Shui master came to my humble abode and assisted me with arranging my space to create the optimum living space for me.  One that facilitates healing, comfort, spiritual growth, family and creativity.  After she left, I felt much more capable of finishing my move.

I found the rather reasonable fee well worth it, for she saved me from making several purchases for furniture that I really don't need.  Yay.

My "stuckness" today is that I still need a piece for the TV, a TV and a pretty storage area to hold the unfinished projects from mom, photos, and my project stuff.  Plus I work part time from home and want my desk area to generate creative positive energy.  I need to finish the project, sigh.  After I am done writing, I will play with Marilyn and order my stuff.  Yes I will!

I recently moved from a very small one bedroom quiet apartment to a two bedroom in the same building.  I am totally and completely exhausted from moving mom's things, my things and now needing to finish setting up my things.  I am tired of things, to be honest.  Most definitely tired of moving.  This last move will either be number 29 or 30 for me.

But mom's things are beautiful, her pottery, art, photos, furniture and other pieces bring me comfort.  I want to honor her memory properly and display them with care.  No clutter.  No tacky arrangements.

The consultant surprised me.  She was bright, cheery, well trained, almost two decades, and just knew what to do.  I let her know I was still in treatment for ovarian cancer recurrence, mom had just passed away and that I needed help to create the ideal space.  We chatted, she was very comfortable to talk with.  Then she rolled up her sleeves and started moving things around. 

I had mom's painting and prints all lined up along with nicely framed family photos.  We spent lots of time planning the placement of each piece to be in harmony with the energy of the baqua, or life layout.

It was amazing to see how she placed each piece just perfectly and suddenly the area radiates, the piece is more vibrant and you want to be in that space.

I need a handyman to help me hang prints.  I need to still buy the storage units, media table and TV.  After that it's a matter of ongoing shredding and setting up the pottery for display.  I want to get to work on the photos project. 

I am also chronically fatigued, behind on tasks related to moving, etc.  I just am overwhelmed.  When my apartment is finished, this space will be a part of my healing as opposed to just a place to stay and pay rent.

I have always been very sensitive to my surroundings.  My mom used to sort of complain that I was too particular.  I separated my food.  Can't stand to be in dirty places or dark spaces.  I would make a terrible archeologist for example.

My mom is allowing me an opportunity to fully create this space and I am excited. 

Below I am pasting a link about cancer fatigue and also a link to Cynthia Chomos.  She really made it easier to blend my mom's belongings with my few little things into an arrangement that honors the work she did and inspires me to thrive.

I am weighted with worry because I am adding Enbrel to my arthritis treatment plan.  Basically Enbrel works by blocking Tumor Necrosis Factor to fight inflammation.  My Avastin fights to cut off blood supply to my tumors.  So Enbrel could make it easier for my tumors to flourish.  I have run out of options.  Part of my terrible fatigue could be from the bad arthritic flares that started  back in September.  I need to get my arthritis under control, and the risk to my cancer is small but there.  I just would be devastated if something went wrong.  I am tired of crying when I have to open a difficult container.  Ha

So anything we can do to create a healthy living space will help us feel better.  I have always operated that way.  Please take a moment to look at these links.  Cynthia was the exact person I needed to get me started here in this new place. 

................................................

Feng Shui

http://www.cynthiachomos.com/index.htm

Cancer Fatigue

http://www.cancer.gov/cancertopics/pdq/supportivecare/fatigue/Patient/page2

Mom in one of her gardens.

A Kansas Hurricane

A Kansas Hurricane

I looked back with a smile as I was leaving to see my mom holding the screen door open.  The little white house with the deep gray roof, the simple paneling, a window on either side and the narrow walkway that led from the porch to the sidewalk said “Kansas” with an exclamation point.  I could see a pale blue sky and little puffy clouds overhead.  It should have been a perfect day.

I was headed to school.  Mom was standing in the door, like she always did, wearing her favorite maroon shirt.  Standing tall she was squinting just a tad so that she could see me wave goodbye and shout out “I love you mom”.  She waved back and said "I love you too sweets".  Then of course I had to tell her I’d see her later, as I knew I would.  As I started to turn my head in the direction I was walking, she showed a slight look of concern and forced another little grin.  If I close my eyes I can hear the screen door creak and shut with a little snap. 

The school’s architecture was very strange, no flow or symmetry.  As I entered, it appeared that I was immediately escorted into a large cubicle, one of many throughout.  You never saw one end of the building or had a clue as to your direction or destination. No signs, no numbers, no labels or directory.  There was literally nothing, no computers or phones.  Just walls. The walls were either a shade of silver or blue.  It was stark and cold. 

I sat at the table and this man came in wearing a black suit and tie.  Crisp, as in executive crisp.  He placed a briefcase in the middle of the table, pulled out a document and began reading to me terms and conditions of some sort of insurance policy.  As he droned on through the paperwork a feeling of panic surged through my body.  I felt as if this was some sort of reading of a will, a new destination, a place that had been pre-determined for me and I wanted nothing to do with it.  I wanted to go back home to be with mom and that was that.  I was supposed to be going to class and this event was not in my plans.  I ran out of the room in search of my homeroom, my place of study. 

The halls were narrow and zig zagged from side to side.  I ended up in what was an auditorium.  The room had two tiers.  I found a seat in the first row of the second tier, straight in the center. I had the perfect view. The benches morphed from luxury theatre seating into small seats you would find in an old gymnasium.  Then back again to soft cushy blue seating.  It was as if the room could not decide what it needed to be.  That was the mystery of this building.  When you walked in it sort of becomes what it needs to be.

Today it needed to be a classroom, a place of learning, a place of hope.

I am never one to arrive early.  I am always just a tad late. This time I was early and was so pleased to see that I had a perfect view of the grand chalkboard and had a chance to settle in, taking notice of each new person’s entry into the auditorium. I wanted for mom to be proud of me.   

As I was waiting I noticed that my bag became overly heavy, cluttered with lots of papers, books and personal items.  Another wave of panic set in.  I started to get worried that I had lost my phone.  I loved my cell phone.  It was so unique.  This phone was in the shape of a combination lock, golden and fit perfectly in my palm.  The dial was old fashioned in the sense that if you wanted to make a phone call, you aligned the digits vertically.  

The code was the phone number. Each row was 0-9 and there were 10 rows.  I loved the sound, “click click click”, the lock would open and I was on the phone with mom.  I loved my phone.  It was the only means available to talk to mom outside of the house.

I quickly pulled the bag onto my lap and plunged my right hand straight to the bottom.  I was swimming through its contents over and over hoping to find my phone, the only lifeline to mom. Out of nowhere a huge gust of wind and rain swept over the building. The sound was deafening.  People started running towards the edges to get to safety, stepping on top of one another, screaming and crying.

My bag and all of its contents spilled out onto the stairs. I watched my shiny golden phone roll off the edge of the balcony and drop into oblivion. My only connection to mom was gone. The only line to hear her voice again was lost forever.  I closed my eyes to see her once again, standing there, waiting for me to come home.  I had never felt such pain until that moment in time.

The building rocked again and there was a thunderous bang, a surge of rain and darkness overcame us.  I tried to gather my belongings but I could not stay steady.  I found myself hanging from the second tier by my fingernails.  Someone pulled me up and and we managed to get to safety. The fierce wind and water hit us like tiny bullets.  We could barely see as the rains grew stronger.

What was once inside was now outside.  The roof blew away in one giant flash.  What was a sea of sunflowers was now a sea of water.  For miles and miles nothing but cold water, snowy water, dark black water filled with debris.  I looked and looked and looked for mom’s house.  I could not see her house.  I could not see anything.

I am not sure what happened next as I think I passed out from the trauma. I awoke to find myself in a car with a very nice couple who said that they were here to help me find my mom.  The car had no wheels and was on a black conveyor belt.  The terrain was very steep with lots of hills.  I could hear the clanging of the gears as we escalated up to the top of the first hill, then down we went, sliding to the bottom, only to be brought up to the top again.  This ride went on for a bit and somehow we were routed off to the side into their home.

The house was empty, more like a stage than a home.  It had no furniture, no food  and no belongings.  It looked abandoned, but not.  It was their home.  Nothing was actually attached to any surface.  I remember a kitchen and a bathroom.  The white paint was chipped and the kitchen counters had some sort of metal molding all around it.  I sat for a moment to gather my thoughts and began searching for a phone.  I ran from room to room looking in every corner, every closet, every cupboard and every vent.  I fell to my knees begging them to give me their phone and each time I was told here was no phone.

I accused them of lying.  I begged and pleaded.  I needed to hear my mother’s voice!  I needed to know that she survived!  I needed to know that she was OK and wanted to tell her again how much I loved her.  I needed to talk with her one more time. I needed her to know that I was there and that I was going to help her. 

I recoiled in exhaustion and sobbed.  I would never be able to speak with my mom again.  The waters from the hurricane had flooded the state of Kansas, reaching from the Gulf to Nebraska.  Those of us that were left would start all over.  Her words of “I love you” from that morning would be the last words I would ever hear from my mom.  

That would be the last time I would feel her loving smile.

The end.

Denise Archuleta 

February 16, 2014

===============================

I awoke this morning from that nightmare in total upper body pain, including severe pain along my collar bones and neck.  I must have been squeezing 

my body in a ball all night long.  

I miss my mom so much.  I want so desperately to talk with her 

just one more time.

I love you mom!