Wednesday, May 15, 2013
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
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.]
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
Tuesday, May 14, 2013
Wednesday, May 08, 2013
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
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
From the whitehouse.gov webpages:
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 can watch President Obama's remarks below or on YouTube:
Tuesday, April 09, 2013
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.
JNCI J Natl Cancer Inst
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
Monday, April 01, 2013
Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.
I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.
I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....
My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.
Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.
My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.
A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.
Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.
He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.
Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.
My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.
So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.
Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY
My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.
During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun
The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.
I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.
I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.
Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.
Thank you God for my loving family and friends. Thank you Arnie.
It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.
If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.
So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.
My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.
One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.
I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.
Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.
I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.
A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.
Happy Easter and much love to my family and friends.
I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.
Tuesday, March 12, 2013
From The New York Times and The Society of Gynecologic Oncology.
Thank you Libby's Hope for letting me know of this significant study.
March 11, 2013 Widespread Flaws Found in Ovarian Cancer Treatment By DENISE GRADY
Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.
The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.
Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.
“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.
The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.
Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.
But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.
“They took the reins out of my hands,” Ms. Mason said.
She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.
Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”
What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.
The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.
Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.
“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.” <9> One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.
Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.
Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.
Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.
But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.
Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.
Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.
And most ovarian cancers are extremely sensitive to chemotherapy, experts said.
In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.
The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.
The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.
Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.
Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.
“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”
Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”
Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).
“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”
Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”
“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.”
Thanks to a very wise hematology oncologist in California, where I had my surgery, I was referred to a gynecology oncologist for my debulking surgery. I was optimally debulked and received aggressive chemotherapy. Although I am in a recurrence and on chemo again, I am alive! Had I followed the initial referral to a regular surgeon, I would not be here. Thanking God for that.
When will basic OB/GYN and PCP professionals get it? My care here in Seattle is great. The SCCA takes very good care of me.