Gynecology Oncologist the Only Surgeon For Us

The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt


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.

Love,
Denise

Urgent: One Third of OVCA Patients Receive Proper Surgery and Treatment

http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?pagewanted=all&_r=1
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.

They Just Disappeared

I am almost 50 years old, well in a year and half I'll be 50.  Thinking now about all the people I can remember who I know or knew.  Wow, it is truly fascinating to think of what now lies beyond the magnitude of our reach.  Each soul on earth is valuable beyond measure.

I had a weird scare this past week and thought there was something else wrong with me.   No details needed, just suffice to say that I was freaked.  I was not hallucinating or imagining these spots that I saw.   I was worried it was a new cancer, along with another unpleasant issue.

I prayed and prayed.  I wrote to my faithful ovarian sisters about the distress.  I asked my mom and sister for support.  It was so reassuring to ask other people and be calmed by their perspective.  Many said not to worry, it is probably something simple.    Probably not more cancer or new cancer.

I remind you that it was not an illusion the spots I saw.    There were three.   I was certain that it could be a melanoma.  They could not be washed away.  They were there.

Most of my life I have felt fairly undeserving of goodness.  Each new day that arrives brings to me another opportunity to love God more and more.  With each new realization of His grace I recognize how much more I can do.  I love God so much.  I get so surprised when my prayers are answered, not because I lack faith in Him, but because I just don't feel like I deserve it.

Within 2 days I was seen for an examination.  I was very nervous.  After a thorough examination I was told that there is nothing new and there are no spots anywhere.  I didn't believe her.  I looked and looked for myself and found nothing.  Nothing.  The spots were gone. I was so shocked and relieved and thankful.

The only thing that can be said is that the people I love were sending prayers and well wishes to God.  Even if it was not a conscious prayer, it was heard.  There is no other explanation for the spots to have disappeared.  I am so grateful for the prayers and of course to God.

Even if you are not sure of God, ask for His help.

I am excited that I could be here for my 50th birthday and look forward to being of value to my family and friends, my neighbors and community.

Thank you for being there.

Love,
Denise

MUGA scan tomorrow

I remember we'll the days of my young adulthood when the only reason I didn't travel or do more was because I didn't want to use up all my vacation.  Being naive I thought those kinds of sacrifices would protect me somehow from injustices in the world of work.    Hence, no trip to Hawaii, no cruise, no east coast bed and breakfast tour in the fall.  

I also recall wondering if I had made the incorrect degree choice for college.  I wanted to help people, but not break my back doing it.

How could both of these problems be avoided for other young people?

Encourage them to volunteer doing something related in the same or similar industry, before college. Help them land an unpaid internship the summer of their freshman year in high school.  

Really risk it and see if they can wait one year after graduation to either do an internship or travel and work in a job similar to the career they are saying they want to do.

If we wait to do our heavy and important life building travel until we are older, our bodies may not be up to the task.   I'm just saying.....

I have a MUGA scan tomorrow at SCCA.      http://www.cancer.net/all-about-cancer/cancernet-feature-articles/-tests-and-procedures/muga-scan-what-expect

I have been on Chemo for a year.  

I am so tired.    I need 12 to 14 hours of sleep per day.  I start to feel a tired again after being up for about 8 hours.  My body broke out in the last few weeks with all kinds of blisters, yuck.    That is also from the chemo.   Oh happy day.

Will post again in a few days.    Next chemo is March 4th.

Had the best time with mom over weekend watching Flight and Beasts of the Southern Wild.  Next is Argo.


love you all lots and thanks for checking in

Denise

La La La La La La La La Laaaaaaaaaaaaaaaa

Below is a copy of an interesting article about a pilot study on the effects of music on the health of cancer patients.  I am expecting that it will show that people believe to feel better and hope that it will reveal some form of stabilization on the effects of medications.  Even better, a reduction of the negative side effects.

To give you an idea, during chemo you are very fortunate if you are receiving your medications in an area that can be closed off and kept quiet.  I know that when I get the opportunity to have a bed and a door I am much more relaxed.  It is really stressful to hear all the beeping IV alarms and nursing call buttons, other people's TVs and music and conversations and people going up and down the halls.

When the room is quiet, it makes an amazing difference and is very calming.  If the environment could be even more improved to offer music, it could help alleviate bad side effects and distract someone from anticipation of side effects as well. (I have an Ipod given to me by my brother, but I forget to bring it sometimes.) 

I can also say though for me that 90% of the time I'm sleeping through the bulk of chemotherapy, even if I have not been given benadryl.  I am so chronically tired that when I can sleep in a comfy bed and not have to worry about anything because the nurses are right there, I can relax too.  I slept 15 hours or so on Sunday again, slept til 1:00 pm today.

I remember when mom was going to dialysis and I just felt terrible for her and the other patients.  The dialysis machines sound like slot machines.  No joke, not at all.  The volume cannot be turned down.  Each person on dialysis cannot move their arm during the transfusion.  Slight changes in movement or flow or anything cause the machine to sound an alarm, and they sound off constantly.

I am so glad she isn't needing that right now.

Anyway, I digress.  I wanted to share this interesting pilot study with you because maybe you can find a way to incorporate music into your life in a therapeutic way if you are receiving chemotherapy or have any major stress in your life.  

Love,

Denise
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Source:  http://www.news-medical.net/

Study investigates whether music therapy reduces stress in cancer patients

Published on February 19, 2013 at 9:20 PM 

A Saint Louis University Cancer Center pilot study is investigating whether music affects the health of cancer patients by soothing them and making them less anxious.

"We can see that some of our cancer patients who are undergoing treatment are showing signs of stress because their blood pressure is higher and respiration rate and pulse is faster than normal. Our goal is to see if music can help bring those vital signs into a more normal range," says Crystal Weaver, SLU Cancer Center's music therapist and a study co-investigator.

"There are a lot of reasons cancer patients feel anxious when they come in for treatment. They may be dealing with unpleasant side effects of medications, such as hair loss or nausea. 

Sometimes they are thinking about how their illness impacts their family and finances and their ability to continue working. We want to find the best way to use music, which may not cost as much as other therapies and has no negative side effects, to help reduce their anxiety."

The study looks at three groups of cancer patients - those who hear live music performed during chemotherapy infusions; those who receive music therapy in their hospital or exam rooms; and those who do not have music as part of their treatment.

Researchers will measure the study participants' body responses - blood pressure, pulse and number of breaths taken per minute - and note their answers to a questionnaire developed by psychologists to detect stress. For those patients in the music groups, measurements will be taken before and after they hear music while they are receiving treatment.

Some study participants will hear musicians from the St. Louis Symphony, SLU School of Fine and Performing Arts students and Maryville University music therapy students, who play music in SLU Cancer Center's infusion room.

Others will be able to choose the music they want to hear during a one-on-one session with a music therapist.

"Patients request anything and everything - country, religious, musicals, music that was popular when they were in their teens and 20s. I take the music they like and play it at 66 beats per minute because previous research shows that tempo helped well adults relax," Weaver said.

"A pulse of 60 to 72 beats per minute is considered normal and we're hoping to match our study participant's pulse to the beat of the music. Once the heart rate begins to slow, the patient is more likely to take deeper, slower breathes and his or her blood pressure could drop to a healthy level."

The phenomenon of synchronizing the rhythm of the music to a patient's heart beat is called entrainment. It occurs when one person matches the pace of another so they can walk together or when the pendulums of two clocks near each other swing in the same motion.

<< Continued from Previous page

Participants in the one-on-one sessions also will receive a specific type of empathetic, nonjudgmental therapy that opens patients up to participate in art and movement therapy with good results, Weaver added.

If the study shows that after music therapy, the pulse, blood pressure or respirations per minutes drop or patients' scores on the questionnaire to detect anxiety improve, more research into the benefits of much therapy will be justified, Weaver said. Future research could hone in on how much anxiety levels decreased after music therapy and how reduced anxiety affects a patient's recovery time, complications and willingness to comply with treatment.

The SLU Cancer Center is the only cancer center in the area to have a full-time music therapist on staff and the first to establish a partnership with the St. Louis Symphony.

Mark Varvares, M.D., SLU Cancer Center director, received a national award in October for his advocacy work for music therapy from the American Music Therapy Association.

Varvares is the principal investigator of the study.

"While there's anecdotal evidence that patients who have music therapy after surgery need less pain medication, this research project is among our first to explore the connection between music and healing," Varvares said. "The pilot cancer music therapy study is a step toward helping us to better understand music's effect on health."

Source: Saint Louis University Cancer Center

http://www.news-medical.net/news/20130219/Study-investigates-whether-music-therapy-reduces-stress-in-cancer-patients.aspx