Sunday, September 11, 2016

Book Review: Making Sense of Medicine

During the 9 years I have written this blog I have read and reviewed a number of books by cancer patients, their caregivers and their physicians.  The focus of these books has always been cancer. During that time period I have also promoted the need for more patient-centered care. My definition of patient centered care is treating the person not the disease based on the individual patient's needs and situation.

When Dr. Zachary Berger, ( @ZackBergerMDPhD), a physician at Johns Hopkins, who I follow on Twitter, tweeted that he had published a new book,  Making Sense of Medicine-  Bridging the Gap Between Doctor Guidelines and Patient Preferences I was interested in reading it.  I wondered how he would describe the importance of patient-centered care from his, a physician's, perspective.

His book contains chapters on various common chronic diseases - High Blood Pressure, Arthritis and Diabetes. Within each chapter is the story of his patient's experience with illness and his interactions with those patients. Some of those interactions were funny and after reading some I was angry at the situation. I could identify with some of the stories as patients with multiple diseases dealt with the system. Although there is not a separate section for or about those living with cancer there are chapters that are useful to the cancer patient and survivor such as Depression, Surgery, Guidelines and Is Half of all Research Wrong?.

His chapter on Poverty : Making Decisions, Our Health System - And You in the Middle is very thought provoking and points out the health care disparities in the United States. Berger writes " we don't get the right treatments to exactly the right person just when and where they need it ." He goes on to say "And giving too much care is a subset of this problem."

As I read the book I underlined many phrases and paragraphs.

When I read "...The biomedical assumption that knowing what is broken will tell us how to fix it is not always justified". I thought of a friend who turned down a spinal tap to see if there was cancer in her brain because she had decided to stop treatment.

When speaking of guidelines Berger says " there is no perfect evidence that matters the same way to everyone, everywhere". That is why asking patients their needs and wants is so important.This section is the only one in which I would add that ASCO (American Society of Clinical Oncology) is including patients on all their Clinical Guideline Panels and they are having a voice as those guidelines are developed.

Reading "There will always be such situations in which the personal question outpaces the available scientific evidence." I thought of cancer patients with multiple recurrences / metastatic disease with different treatment options available to them and being in uncharted waters.

In Revisiting the Biomedical Paradigm he writes"Identifying conditions (diseases) through signs , symptoms, following them up with diagnosis and pursuing effective treatment is not the only effective path to help . " He recommends a more sensible approach "science of the individual". Yes!

I could go on but I would prefer that you read the book and find the sections that speak to you and an individual patient, doctor or caregiver .

If you are a patient, caregiver or health care provider I highly recommend Making Sense of Medicine. It will make all of you think. Patients, I hope it empowers you to ask questions and become a partner in your health care.

I appreciate the opportunity to read and review this book.

Every Day is a Blessing! 

Wednesday, August 24, 2016

Between a Rock and Hard Place - Surveillance after an Ovarian Cancer Diagnosis

The Study:
A recent journal article in JAMA Oncology,  " Use of CA-125 Tests and Computed Tomographic Scans for Surveillance in Ovarian Cancer"  concluded
"CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs."

I am unable to read the entire article since it is by subscription only but will summarize the information that was provided and in other articles I read regarding the research.

In 2009, a study (Rustin)  found that treating ovarian cancer recurrence on rising cancer antigen blood test CA125 increased the use of chemotherapy treatment and decreased quality of life.

This prospective cohort study of over 1200 women, in remission after initial surgery and chemotherapy, took place at 6 NCI Comprehensive Cancer Centers. They looked at the use of CA-125 and CT scan before and after 2009.

The results showed the use of CA-125  and CT scan before and after 2009 was similar. In those women whose CA-125 doubled there was not difference in re-treatment before or after 2009. The study found in a 12 month period "a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient". They found that this resulted in  "a US population surveillance cost estimate of $1 999 029 per year for CA-125 tests alone and $16 194 647 per year with CT scans added." 

The Guidelines:
Why has the use of CA-125 and CT not change since 2009? Maybe a reduction was not seen because of what is written in the NCCN Guideline for Ovarian Cancer released in 2015.
The NCCN Guideline for Ovarian Cancer recommends follow up tests every 2-4 months for 2 years then every 3-6 months for 3 years then once a year after 5 years. The tests recommended are :
Physical and pelvic exam
CA-125 if initial results were high. 
CT, MRI , PET as needed
Chest X-ray as needed
Genetic counseling if not already done.

SGO Recommendations:
In 2011 the paper
Post-treatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations

These recommendations were made:
SGO lists  the CA-125  as optional for surveillance in previously diagnosed women.

They stated: "Until the ideal surveillance is determined, individualized patient plans that consist of a thorough assessment of symptoms and physical examination, which includes a pelvic examination,should be undertaken. The role for CA125 level monitoring should be discussed with patients. The pros and cons of imaging should be discussed with the patients who do not have an elevated CA125 level at the time of diagnosis.When a recurrence is suspected based on symptoms, examination, or CA125 level,a CT scan of the chest, abdomen, and pelvis should be obtained to determine the extent of the disease. PET scans are a useful adjunct when CT scans are indeterminate (Table 3)."

My Commentary: 

My recurrence on my liver and spleen in 2008 was picked up on a follow-up CT scan.  My CA-125 was 17 up from 13. I wasn't worried about a recurrence at the time because my CA-125 was still normal but there it was. I'm thankful that the CT scan was done so that one of my treatment options could be surgery then chemo. My CT showed only 2 distinct lesions so I chose to have surgery first.

When the 2009 study came out, I told my gyn onc that I no longer wanted to have the CA-125 test done.  We agreed that I would not begin treatment for a recurrence unless I had symptoms or something showed up on a CT scan but I continued to have the CA-125 test.

Based on my personal experience when CA-125 goes up even a little bit I get anxious and think recurrence.  I agree and understand that chemotherapy treatment should not begin on a rising CA-125 alone. But what about the fear and anxiety that a women feels during the watch and wait period?

I also know that radiation from multiple CT scans raises my risk for other cancers.  But right now there is no other way ( unless I use an MRI or PET) to determine if I am having a recurrence. With data showing the rate of recurrence in ovarian cancer is very high, what is a woman to do? 

Based on the SGO and NCCN guidelines a  personalized approach to determining surveillance is what is needed until as the SGO paper stated "the ideal surveillance is determined"

Every Day is a Blessing!

Monday, August 22, 2016

NJ Ovarian Cancer Awareness Month Events

September is National Ovarian Cancer Awareness month and Gynecologic Cancer Awareness Month. You can raise awareness and funds for research by taking part in one of these events held throughout the state of NJ. Organization's whose events are featured in this post include: Janice Lopez Ovarian Cancer Foundation, Kaleidoscope of Hope Ovarian Cancer Foundation, The NOCC New Jersey Chapter and The Teal Tea Foundation.

If you are organizing an  event in NJ please e-mail me and I will include your information in this post.

Every Day is a Blessing!

Janice Lopez Ovarian Cancer Foundation 
Sunday Sept. 25,2016

3rd Annual Concert for a Cure - The Encore Orchestra of NJ

Purchase tickets online at


Kaleidoscope of Hope Ovarian Cancer Foundation Events:

Sunday, Sept. 18, 2016 - The Gail MacNeil Morristown Walk
Loantaka Brook Reservation, 468 South St. Entrance, Morristown, NJ
Saturday, Sept. 24, 2016Avon Walk
On the Boardwalk at 600 Ocean Avenue, Avon-by-the-Sea, NJ
Sorry, no dogs allowed - Special Passing The Torch presentation  (see below)

Sunday, Sept. 25, 2016 - The Diane Castle Lyndhurst Walk -
Richard W. DeKorte Park,  Valleybrook Ave., Lyndhurst, NJ
Sorry, no dogs allowed

Online registration :

National Ovarian Cancer Coalition-NJ Chapter Events:

Wednesday, Sept. 7, 2016
Sky Blue FC / NOCC Night
Buy tickets on this website:
(CASE SENSITIVE) password: skybluenocc

 Friday, Sept. 9, 2016 

 Sunday, Sept. 25, 2016
Mayor's 5K Run/Walk 


Teal Tea Foundation 

Sunday Sept. 18, 2016 

Color Me Teal Run/Walk 

Wednesday, August 10, 2016

Neoadjuvant Chemotherapy Guideline for Advanced Ovarian Cancer

I was privileged to represent women diagnosed with ovarian cancer as the patient representative/advocate on the the joint SGO / ASCO guideline panel  that developed the recently released:

Neoadjuvant Chemotherapy for Newly Diagnosed, Advanced Ovarian Cancer: Society of Gynecologic Oncology and American Society of Clinical Oncology Clinical Practice Guideline

It was a process that took over a year, a few meetings (in-person and online), and many e-mails. During the entire time I felt that the "patient voice" was an integral part of the process. 

Thank you ASCO, SGO and Drs Alexi Wright and Mitchell Edelson, Guideline Chairs,  and the entire panel for giving me this opportunity. 

Every Day is a Blessing

Wednesday, July 27, 2016

We Talked...

Earlier this week I met my friend, Sandy, for lunch. Sandy and I first meet when we attended the Gynecologic Cancer Support Group meetings at our cancer center in 2007. We were both diagnosed in 2005 with stage 3 serous epithelial ovarian cancer. We became friends and have stayed in touch even though Sandy now lives half the year in the Florida Keys.  Since she returns to NJ for the summer, we took this opportunity to get together.

Our lunch conversation was not about politics or the heat wave. Nope we talked about our gynecologic oncologists and our nurses. Even after more than ten years, those doctors and nurses still play an important role in our lives. Both our doctors are practicing in different locations now. So we talked about what went into the decision to stay at our cancer center or follow them to their new locations. Not an easy decision at all.

Then we talked about how even 11 years out,  we still worry about a recurrence. We laughed about how we can't multi-task any longer because when we do, we forget things. We weren't talking about forgetting where we left our keys or glasses. We were talking about finding the right words / names for things. We talked about how on some days we still need to nap because we are too exhausted to function properly. We talked about how our toes are still numb and how we can literally trip over our own feet- and it is not the shoes we are wearing.  We talked about how we still get nervous when we need to have our blood drawn for our CA-125 level. We talked about gaining weight. Do you feel bloated? ( One of the signs of ovarian cancer.) We talked about how neither of us have had a CT scan in over 2 years. Should we get one? We don't want to expose ourselves to the radiation but we know that for us that is the only way we will find a recurrence. Decisions, Decisions.

I talked about my advocacy work and she talked about her paintings and recent gallery exhibits. We talked about our families. We have been blessed and we have accomplished a lot over the past 11 years.

Then we talked about Pam and Sharon and Rita Kay and others from our support group. We can't understand why we are two of the lucky ones- women who have lived ten plus years after an ovarian cancer diagnosis. Sure we try to exercise more and eat better - less red meat , more fruits and vegetables but nothing dramatic.

Honestly, we don't know why we are still alive... and why our friends are not...eleven years later.

Every Day is a Blessing! Blessed to be celebrating my 11th cancerversary on July 29th.

Thursday, June 30, 2016

NJ's Regional Moonshot Summit

Yesterday hundreds of researchers, oncologists, advocates,  insurance and pharmaceutical industry representatives met at Howard University in DC for the Cancer Moonshot Summit.

Here in NJ running concurrently with the DC meeting we held a regional Cancer Moonshot Summit.  As in DC advocates, insurance and pharmaceutical industry representatives, oncologists and others met at the Cancer Support Community Central New Jersey (CSCCNJ) to discuss the initiative. Cancer Support Community is a partner in the Moonshot Initiative lead by VP Joe Biden. The Regional Summit was co-sponsored by Rutgers Cancer Institute of NJ. This regional Summit was an excellent way for individuals to share their ideas and provide input to the  White House Cancer Moonshot Initiative.

The NJ Summit included watching VP Biden's speech from DC and a panel discussion. The panel included D. Toppmeyer, MD Rutgers Cancer Institute of NJ, U. Dugan, MD, PhD Bristol Myers Squibb, E. Levine LCSW, W. Wengel III Aetna, D. Gonzalez, US Dept of Health and Human Services and myself.

Panel participants .
Photo courtesy of @RutgersCancer
We discussed putting patients at the center - how to improve the experience of patients when initially diagnosed, after treatment as well as those treating cancer as a chronic illness as well as how to insure the information patients read online is accurate.  We also discussed the best way for oncologists in a community setting to be on top of the latest treatments and clinical trials. We ended with a short discussion of how to recruit patients to clinical trials and dispel the myths associated with clinical trials.

I was honored to be a part of this initiative. I am usually the one Tweeting from conferences but multitasking at this event was a bit of a challenge. So I share this Tweet with you. 

I have also submitted ideas to the Cancer Moonshot through the website. Do you have an idea? The site is live until July 1,2016 

As VP Biden said "This is Urgent" and I agree . This initiative gives me hope that we will develop a screening test.

Every Day is a Blessing!

Thursday, June 16, 2016

The Days of ASCO - Connections

In addition to being a medical conference where new research results and discussions take place,  the ASCO Annual Meeting is a great place to make connections with oncologists, researchers and advocates. I was able to rekindle friendships with advocates I met at the 2006 LiveSTRONG Survivors Summit and Stanford MedX 2014 and meet in real life folks I have been following on Twitter.

I stopped to say hello to Sarah from CHN. I volunteer with CHN.
I ran into one of my former RCINJ pharmacists in the Oncology Professionals Hall. 
I got to spend time with the #gyncsm Health Care Moderators, Drs Markham, Westin and Boulay at the ASCO Tweet-Up 
@corrie_painter and @womenofteal meet in person for the first time at the ASCO Tweet Up

#bcsm friends ( @stales, @DrAttai) and @SheWithLynch

@AliveAndKicknDD, @coffeemommy, @trwoodhull

So pleased I got to meet Lucy Kalanithi.(far right)  She spoke during the ASCO Book Club session about her husband, Dr Paul Kalanithi's book, When Breathe Becomes Air       

As I finish this last ASCO post I feel honored to have spent time with these amazing advocates, oncologists , physicians and researchers. I want to thank Conquer Cancer Foundation for supporting my scholarship to attend. 

Every Day is a Blessing!