CDC Symptom Diary Card

Thursday, May 16, 2013

Jolie Being Proactive To Avoid Ovarian Cancer

By clicking on this paragraph, you will be taken directly to the article from Healthday. I am so sorry that I am unable to add the direct link.




Dear readers, this article about Angelina Jolie's decision to also have her ovaries removed is well written and informative. It provides educational information that helps to further explain all the options for managing preventative measures related to breast and ovarian cancer.


Taking this measure can be a life saving measure, and I am so proud of her for being proactive and sharing this journey with us. Ovarian cancer is not well understood, underfunded in terms of reaearch, and is the deadliest of all the gynecological cancers.

Bless you Angelina and may you always be healthy and smiling!

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



Angelina Jolie Will Have Ovaries Removed to Lower Chances of Cancer: Report
Actress has already had double mastectomy due to gene linked to high risk for breast, ovarian cancer

May 15, 2013

By Steven Reinberg
HealthDay Reporter

WEDNESDAY, May 15 (HealthDay News) -- Film star Angelina Jolie will have her ovaries removed to help lower her odds for ovarian cancer, People magazine reported Wednesday.

The news comes just a day after Jolie, 37, revealed in an article published on the editorial page of The New York Times that she had undergone a double mastectomy. Jolie wrote that she made the decision after learning she carried a gene, called BRCA1, that is linked to a significantly higher risk for both breast and ovarian cancers.

[See Diet Changes That Might Cut Breast Cancer Risk.]

Now, Jolie "is also planning to undergo surgery to remove her ovaries," an operation known as oophorectomy, according to People.

Jolie's mother, actress Marcheline Bertrand, died of ovarian cancer at the age of 56.

According to the Mayo Clinic, preventive removal of the ovaries can cut the risk of ovarian cancer in a woman with a BRCA mutation by 80 percent to 90 percent.

In the Times article, Jolie said she began the process to have both of her breasts removed in early February.

[See 4 Steps to Take Now to Lower Your Breast Cancer Risk.]

Writing about her mother's nearly 10-year-long battle with cancer, Jolie said: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was."

Jolie, who has six children with her companion and fellow film star Brad Pitt, said she often finds herself trying to explain to her children about the disease that killed her mother. "They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a 'faulty' gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer," she wrote.

[See Gaining a Pound a Year After Age 20 Nearly Doubles Women's Breast Cancer Risk.]

The BRCA1 and related BRCA2 genes belong to a class of human genes known as tumor suppressors. According to the U.S. National Cancer Institute, in normal cells, the BRCA1 and BRCA2 genes help to maintain the stability of a cell's genetic material -- called DNA -- and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.

The cancer institute estimates that 14 out of every 1,000 women in the general population will develop ovarian cancer in their lifetime. However, that risk rises steeply among women with mutations in either the BRCA1 or BRCA2 genes to anywhere between 155 to 400 women per 1,000.

These genetic mutations are most commonly found in Jewish women of eastern European descent. Also, Norwegian, Dutch, and Icelandic peoples have higher rates of BRCA1 and BRCA2 mutations, according to the cancer institute.

Dr. Michael Cowher, a breast surgeon at the Cleveland Clinic, said the BRCA mutation doesn't just affect women's breasts or ovaries -- males who carry the genetic mutation face an increased risk of breast and prostate cancers. Also, there's an increased risk of pancreatic cancer in BRCA2 and some BRCA1 carriers, he said.

[See Weight Gain Ups Breast Cancer Risk: 7 Ways to Avoid the Bulge.]

Oophorectomy does come with its own risks for premenopausal women, according to the Mayo Clinic, and the decision should be carefully considered. Risks include bone-thinning (osteoporosis), menopausal symptoms such as hot flashes and an increased risk of heart disease.

The procedure itself "is a generally safe procedure that carries a small risk of complications, including infection, intestinal blockage and injury to internal organs," the Mayo Clinic said.

In regards to Jolie's double mastectomy, experts stressed that breast removal isn't the only choice facing a woman with BRCA mutations. "There are other options they can discuss with their doctor," Cowher said. "These include chemoprevention with medications like tamoxifen, and increased frequency of clinical and image-based screening regimens," he explained.

A double mastectomy involves removing as much "at-risk" tissue as possible to reduce the risk of cancer. The procedure does not, however, guarantee complete protection against cancer, according to the cancer institute.

[See Breast Cancer Chemotherapy: Making Bald Beautiful.]

Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City, called a double mastectomy "the best option for someone who is BRCA-positive."

"The risk of cancer is extremely high and we know that you can watch them, but there is no guarantee that you will catch the cancer at an early stage," she said. "If you have the ability to prevent a cancer, that's probably the best route," Bernik explained.

"Not everyone wants a prophylactic mastectomy and they don't all do that," Bernik said. "But women should certainly be informed."

Bernik said more women are opting for the procedure. "The reconstructive options have improved dramatically over the past 15 years, so women can at least feel confident knowing that if they remove their breasts they will be left with a very good to excellent cosmetic result," she said.

Writing in the Times article, Jolie said, "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

"Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could. I made a decision to have a preventive double mastectomy."

[See Sex After Breast Cancer.]

Jolie said the process of having her breasts removed was finished by late April, and included the reconstruction of both breasts with implants. "There have been many advances in this [reconstruction] procedure in the last few years, and the results can be beautiful," she wrote.

According to the cancer institute, genetic testing can reveal whether a woman carries a BRCA1 or BRCA2 mutation. There are benefits to such testing, whether a woman receives a positive or a negative result. "The potential benefits of a negative result include a sense of relief and the possibility that special preventive checkups, tests, or surgeries may not be needed. A positive test result can bring relief from uncertainty and allow people to make informed decisions about their future, including taking steps to reduce their cancer risk," the agency said.

For her part, Jolie said: "I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer."

"For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."

[See Free Services for Women With Breast Cancer.]

More information

To learn more about the BRCA1 and BRCA2 mutations, visit Susan G. Komen for the Cure.

Copyright © 2012 HealthDay. All rights reserved.



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Tags: ovarian cancer, cancer, genetics, women's health, breast cancer

Wednesday, May 08, 2013

Living With Tumors

I had my Doxil last Tuesday. Somehow the extra dose of anti-nausea meds on Saturday and fluids did not stop yesterday's crash. It was really warm in Seattle, but I was just a mess, really sweating, huge headache, terrible nausea. I was bed bound all day.Thank the Lord my sister woke me up to see how I was doing. I have been trying to re-hydrate and settle out a bit.

So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.

My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.

That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.

All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.

if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........

I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.

The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.

My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.


I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.


With prayer and her guidance, my confirmation name is Denise Raphael.

I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.


World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.

I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.

Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.

Raise awareness but also please donate good money towards research and help your sisters in need.

God Bless you

Sunday, April 21, 2013

Look For The Helpers "Mr. Rogers"

A day to remember, when the good people rushed in.  

On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon.  Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured.  By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police. 

Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process.  Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.

The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line.  The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April.  It was a beautiful day for this most beloved day in Boston.  

We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able.  God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.  

When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA"  over and over.  We will never back down, ever.

God Bless America

http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good

From the whitehouse.gov webpages:
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.

In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"

President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."

In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:

You’ve shown us, Boston, that in the face of evil, Americans will lift up what’s good. In the face of cruelty, we will choose compassion. In the face of those who would visit death upon innocents, we will choose to save and to comfort and to heal. We’ll choose friendship. We’ll choose love.

Scripture teaches us, “God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” And that’s the spirit you’ve displayed in recent days.

When doctors and nurses, police and firefighters and EMTs and Guardsmen run towards explosions to treat the wounded -- that’s discipline.

When exhausted runners, including our troops and veterans -- who never expected to see such carnage on the streets back home -- become first responders themselves, tending to the injured -- that’s real power.

When Bostonians carry victims in their arms, deliver water and blankets, line up to give blood, open their homes to total strangers, give them rides back to reunite with their families -- that’s love.

That’s the message we send to those who carried this out and anyone who would do harm to our people. Yes, we will find you. And, yes, you will face justice. We will find you. We will hold you accountable. But more than that; our fidelity to our way of life -- to our free and open society -- will only grow stronger. For God has not given us a spirit of fear and timidity, but one of power and love and self-discipline.

After the service, President and Mrs. Obama stopped by Boston's Cathedral High School to thank some of Boston's first responders and volunteers for their tireless efforts over the past few days, and then the President visited patients, their families and hospital staff at Massachusetts General Hospital, while the First Lady stopped by Boston Children’s Hospital and Brigham and Women’s Hospital.

You can watch President Obama's remarks below or on YouTube:



Tuesday, April 09, 2013

PTSD And Breast Cancer, Study Opens Healing Doors

Each day brings a repeat of a series of events that are predictably unpredictable.  A battle waged not by me but from deep within my mind, an unhealthy response to the fear of death.

Amended April 16, 2013

For several nights last week I had nightmares. One night it was about a gunman in a shopping mall. I plan to write out the dream in a separate post. I really enjoy doing the writing, not so much experiencing the nightmare. The next night another nightmare about my life as a member of the poorer community, and how being in the lower ranges of the rungs on the ladder has created a bit of unwanted stress. Not in the way of having or not having beautiful possessions, but in a way of the struggle for basics. I don't want to leave this earth in debt, and well, not sure what els to say there.

So I saw my psychiatrist yesterday and after further detailing my experiences, a more prominent concern is a Panic Disorder. I had some confusion because I have nightmares on a regular basis, but it was only for a few months after my diagnosis and surgery that I was fearful and enraged. So stress, trauma, potential PTSD would have been short term......but went unaddressed. My rage was a real barrier for me.

Thank you for listening...back to the article.....


Recent research has spoken of such things when it comes to breast cancer.




http://jnci.oxfordjournals.org/content/early/2013/02/21/jnci.djt024.abstract


JNCI J Natl Cancer Inst
(2013)
doi: 10.1093/jnci/djt024
First published online: February 21, 2013

.......
Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.
.......

I am not surprised at all, cancer of any kind is traumatic.  If you know me you know I am wondering when this type of research wii be done with females who are diagnosed with ovarian cancer.

If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer.  Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.

It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it.  I was told three times that I was too young for this deadly disease.

Well this disease is much less deadly if caught early.

So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer.  And awe shucks I sure am sorry.  And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.  

Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics.  Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.

Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.

I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.

If I can find a peaceful space to allow myself time to connect the dots and move from "why" to "how" and "what", I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.

I was recently diagnosed with Panic Disorder. It took a very long time to figure out what was going on.  I was much more angered than some because I had asked the questions and was denied a CA125 in California.  Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.

Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety.   Loss of the future. Serious stuff for any person to handle.

For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss.....pain pain pain and repeated assaults on our bodily functions and mind.

I got punched in the stomach the day after my debulking surgery.    I have said this many times, I find the irony classic.    Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.  

How it happened was a technician came in my room to take my blood pressure.  My right arm was used.    The cuff was a bit too big, but she secured it tightly.    After reading the pressure she allowed all the air to escape from the arm cuff.  My little arms were not in the way of the tech simply sliding the cuff off of my arm.  There was plenty of room and usually that is what the techs or nurses do.   This gal was bent on unwrapping the cuff.  Velcro always wins and in this case nothing different would have happened.   Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen.   I heard a wailing sound come out of me that has never since returned. It Hurt Like hell. It hurts to wear a bra to this day.

I yelled and screamed and cried and cursed and and and.   They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain.   It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.

Now with the evolving diagnosis of Panic Disorder, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely.  It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.

I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.

For the longest time it was thought that I was just having hot flashes.  Hot flashes are not normally precipitated by severe abdominal pain or nausea.

What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this Panic Disorder.    Maybe my medications will be changed, not sure.

The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.

Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.  

I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR.   I do not want stronger meds right now.  My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can.    I trust in her.  I trust in God I will now also be adding another medication to help.


If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.

You are free to post them in the comments section or you can follow me and send me a private email.

Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.

God Bless You
Servivorgirl