Smart Patients Living With It - Navigating Transitions of Care

 

 

From October 5-9, 2026, friend and advocate Meg McQuarrie, Co-founder Elixir Fund, and I had the privilege to facilitate an online Smart Patient's Living With It discussion Navigating Transitions of Care.  We discussed survivorship, survivorship care plans, living with the emotional and physical side effects of treatment, what is needed after treatment ends and transitioning care to primary care. 

Most of the participants did not relate to the word, survivor,  and very few had received a survivorship care plan. Transitioning care was a challenge as was the everyday navigation of a cancer diagnosis with their health care team. Please read the full summary with quotes at https://research.smartpatients.com/resources/even-when-results-are-great-ending-treatment-is-a-shocknbsp .

The Smart Patients team developed a tool for building or rebuilding a survivorship plan with great resources and tips. Please see https://static1.squarespace.com/static/65304705610ba22b12d39be3/t/6ad8ef6ee9878064e4a3b436/1792601966177/Survivorship_Plan_Toolbox+%282%29.pdf . 

I have been a Smart Patient member for over 10 years and have found the information, support and advice of participants very helpful. The platform is not just for cancer patients/ survivors but includes chronic disease and rare disease communities which offer amazing support. I recommend you check out Smart Patients. 

 

Dee

Everyday is a Blessing  

 

A Month of Awareness

September is almost over and another ovarian cancer awareness month is in the books.  

On September 20th , I was planning on walking the Kaleidoscope of Hope Ovarian Cancer Foundation (KOH)  Walk in Morristown, NJ. I was walking to honor and remember my longtime friend ML who passed away last year from ovarian cancer. The walk was cancelled due to rain and everyone was invited to attend the KOH walk in Bradley Beach on Sept 26th. Sadly, the Bradley Beach walk was also cancelled, this time due to the nor-easter that blasted the coast of NJ causing serious coastal flooding and damaging beaches.  Feel free to donate to this wonderful organization that has been raising funds and supporting research for 20+ years. Many top researchers in ovarian cancer today have been supported by KOH as early career researchers. The list of researchers include Dr.Rachel Grisham, Dr. Fiona Simpkins and Dr. Sarah F. Adams.  If you are able , please donate to support research at   https://pro.gofundme.com/fundraiser/7515514 .

From Sept 16-17th the virtual OCRA International Gynecologic Cancer Conference was held. Videos from the conference are available online at https://ocrahope.org/news/ovarian-and-gynecologic-cancer-information-videos-conference-2026/ . The videos cover Ask the Expert sessions as well as how to manage different gynecologic cancers, survivorship, and how bench research can lead to treatments. 

The Foundation for Women's Cancer held their Race to End Women's Cancer Weekend in Washington DC  from September 18-20th . I've participated in the past but this year there was a conflict with the KOH walk. The weekend included a patient advocacy organization summit on Friday , a patient education session on Saturday and the walk on Sunday. More information about those days are available at https://foundationforwomenscancer.org/2026-race-to-end-womens-cancer-weekend-a-celebration-of-community-hope-and-impact/

Personally, I spent time this month with family and working on projects for my local historical society.  Yesterday, I visited my cancer center for my annual check-up. I have a special long-term relationship with my advanced practice nurse, who I see annually. Even after so many years, I admit I was a little nervous. That feeling of anxiety about a recurrence is strong even after 20+ years. But not to worry,  my CA 125 was 18, the same as last year, and my exam went well.  

I am feeling blessed to be here and to be able to continue my advocacy - reviewing grants, sharing the survivor's perspective on care and long term effects and sharing the latest research. 

Dee 

Every Day is a Blessing! 

 

 

 

 

It's Almost September!

I bet you are thinking, yes, September is right around the corner. It's the start of the school year.  Unless you live in the southern US where school starts in August. There will be school buses making their stops and more cars on the road. It's also the start of Fall so there will be pumpkin flavored coffees and cakes. 

 

 

All those things are awesome but for me, September means Ovarian Cancer Awareness Month.  On my way to the store today,  I saw a few "Turn the Towns Teal" ribbons on trees in West Windsor. That put a smile on my face. I'll put out my teal ribbon banner.  I have already painted my toes with teal nail polish! And I'll switch to my teal pocketbook. I'm happy that Teal is the awareness color for ovarian cancer and also one of my favorite colors. Later in the month, I'll be walking to raise awareness and funds for ovarian cancer research. As most of my readers know supporting ovarian cancer research has been my advocacy focus for years.  

After 21 years, we still do not have an early detection test. I'll repeat it again.  There is no screening test for ovarian cancer. The Pap test is for cervical cancer not ovarian cancer. And it is not because researchers are not trying to find a reliable and specific test. They are. It is just difficult to detect. 

We need to be our own advocates .  Do you feel bloated, feel full quickly,  have abdominal pain or have notice a change in your bowel movements or urination? If those symptoms last more than 2 weeks please see your gynecologist. Back in 2008, I heard the late Dr Carmel Cohen say if you have symptoms ask your doctor to tell you why it is NOT ovarian cancer. Excellent advice. 

We know now that most of the more common epithelial ovarian cancers start in the Fallopian tubes. We can reduce the risk for ovarian cancer if women have their fallopian tubes removed if they are having other abdominal or gynecologic surgeries also called an opportunistic salpingectomy). ACOG ( The American College of Obstetricians & Gynecologists with  and endorsement by SGO ( Society of Gynecologic Oncology)  has written recommendations for Fallopian tube removal. You can read more here. 
 

Check back through the month as I highlight some other facts about ovarian cancer and how to treat it. 

 

Dee

Every Day is a Blessing!  

 

 

 

 

 

 

 

 

We the Patients - A Must Read

Background: When I heard that fellow advocate, Matthew Zachary wrote a book about navigating our healthcare system and patient advocacy, I knew I needed to read it. I have known Matt since the mid-2000's. We connected through the LiveSTRONG Summits and LiveSTRONG Hill Day ( which he mentioned in his book) . He has been outspoken and a driving force behind changes in health care for AYA's and other cancer groups and an influencer of cancer advocates through the years. 

We the Patients is a must read for patients, advocates oncologists , health center administrators and dare I say every Congressman and Senator ! The book provides the history of the healthcare system in the US- the good, the bad, and the ugly. I have witnessed some of the ugly that has occurred through the past 20 yearsyears. 

Matt's diagnosis with a brain tumor is the thread between the chapters. Some of the topics he discusses includes the ACA, the insurance industry, denials of care, cancer debt and the change in survivorship care.  He highlights the work of advocates such as Maimah Karmo,  and Alli Ward,  physicians,  Dr Pat Ganz and Dr Harold Freeman to name a few and organizations such as Cancer Nation, LiveSTRONG whose work has helped improve conditions for cancer survivors nationwide. He stresses how we can and need to be the voice of change.  Hill days are not enough. We need to share our stories, be engaged in policy and vote. 

"I never set out to be a cancer advocate/mouthpiece/champion/ rabble-rouser but that is exactly where I ended up. " We all should be thankful that Matt has been exactly that. This book can make a difference in every cancer patient’s , caregivers and policymakers life.  

If you want to buy a copy on Amazon, please visit https://tinyurl.com/a84npsxv

Dee

Every Day is a Blessing!  

#ASCO26 The Primary Surgery vs NACT Debate

Today I will share information from the #ASCO26  session Let's Debate: Surgery Versus NACT in Advanced Ovarian Cancer , May 31, 2026 with  Dr Mahner- Surgery  and Dr Olawaiye NACT and Dr Bixel distilling the information. 

I posted this to X the day I viewed the session.   

On Demand #ASCO26 Let's Debate: Surgery Versus NACT in Adv OC 5/31
Dr Mahner- Surgery Dr Olawaiye NACT
I wish I was in the room for this debate! Dr Bixel did an excellent job highlighting patient qualities when making the decision whether to use Surg or NACT. #gyncsm pic.twitter.com/DnP5rr2T9Q

— Dee Sparacio (@womenofteal) June 1, 2026

 

Let me share a few other slides from the debate. 

 Dr Mahner shared information about the TRUST and other trials and then looked at real world data regarding surgery and NACT to reach his conclusion that primary surgery is preferred when certain conditions exist. 

Then Dr Olawaiye spoke about NACT - neoadjuvant chemotherapy in late stage ovarian cancer and reached this conclusion to support his position. 

 

Dr Bixel distilled  the data presented during the debate. She spoke of the use of different scoring methods to predict whether surgery was appropriate or not ( Peritoneal Cancer Index and Fagotti Score / Predictive Index Value) and then drew her conclusions. 

 

(There is an article by Dr Bixel in the ASCO Education Book  - https://ascopubs.org/doi/10.1200/EDBK-26-520652   - give a read for more details. )

The Key take away for me was:  

Shared decision making is key! Patient Factors ( frailty, co-morbidities etc)  and amount and location of disease must be discussed with patients. This way each patient is receiving the best treatment for their circumstances.  

Dee

Every Day is a Blessing! 

Review of #ASCO26 - Gyn Cancer Oral Abstract Sessions, May 29th sessions

I did not attend ASCO in person this year but rather I watched sessions live.  When not available live I watched session On Demand the next day.  I continued the tradition I started when I attended meetings in person.  I posted on X (Twitter) summarizing and sharing slides from the presentations. 

The Oral Abstract Session for Gynecologic Cancers was held on Friday, May 29th. My focus what on ovarian cancer treatment research. ( Although there is one endometrial trial in this post) 

 Endometrial Cancer: Ruby Trial Dostarlimab + Chemo Abs 5501

Virtual #ASCO26 Day 1 GYN Oral abstracts long-term survival rates dostarlimab + chemotherapy (dMMR/MSI-H) endometrial cancer in RUBY trial. Matthew A. Powell, MD #gyncsm
OS benefit 16 months | Mixed cure model estimate used in study pic.twitter.com/ofZVX3nMti

— Dee Sparacio (@womenofteal) May 29, 2026

 Ovarian Cancer  NRG GY018  Abs 5502

Virtual Day 1 #ASCO26 Gyn Oral abstracts #gyncsm 5502 OS analysis pembrolizumab plus carboplatin/paclitaxel (CP) as compared to CP plus placebo (PBO) in the NRG-GY018 trial , FDA approval received for EC pic.twitter.com/aYWN5H6KlG

— Dee Sparacio (@womenofteal) May 29, 2026

Ovarian Cancer ROSELLA trial  Abs 5503

Gyn oral abstracts #ASCO26 #gyncsm
OS analyses for prior taxane use in the phase 3 ROSELLA trial of relacorilant plus nab-paclitaxel versus nab-paclitaxel monotherapy in patients OC (GOG-3073)
*Prior taxane use did not reduce effect of relacorilant, No relacorilant fatal AE's. pic.twitter.com/NxvrTN1WfQ

— Dee Sparacio (@womenofteal) May 29, 2026

 Late Breaking Abstract CHIPRO  LBA 5504

Gyn oral ab #ASCO26 #gyncsm A phase III CHIPRO study of chiauranib ( Aurora B Kinase inhibitor) plus weekly paclitaxel for platinum-resistant / refractory ovarian cancer. LBA5504
PFS 4.57 mo , OS no significant difference between arms, most AE's hematological pic.twitter.com/c3UHujM7Ae

— Dee Sparacio (@womenofteal) May 29, 2026

 Ovarian Cancer CHRONO Abs 5505

#ASCO26 Gyn Oral Abstracts #gyncsm CHRONO: A randomized ph II trial of the chronology of surgery after neoadjuvant chemotherapy for ovarian cancer. ( 3 cycles of chemo then surgery vs 6 cycles chemo then surgery.) 10% each arm HIPEC. QOL no significant difference pic.twitter.com/LG7TvyQOS7

— Dee Sparacio (@womenofteal) May 29, 2026

 

Distillation of these studies : 

#ASCO26 #gyncsm Distillation Rosella / Chipro and Chrono Dr Fuh pic.twitter.com/iDr5CQbmRR

— Dee Sparacio (@womenofteal) May 29, 2026

Ovarian Cancer Phase 2 MIRV trial Abs 5506

#ASCO26 #gyncsm Gyn Onc Oral Abstracts
5506 A randomized phase II trial of mirvetuximab soravtansine in folate receptor alpha (FRα)–high recurrent OC eligible for platinum-based chemotherapy (MIROVA/AGO-OVAR 2.34). Higher response rate did not translate to prolonged PFS pic.twitter.com/nB1tXrCzmc

— Dee Sparacio (@womenofteal) May 29, 2026

 

I'll post over the next few days other ASCO sessions including - Rapid Oral Abstracts, Surgery vs NACT, and the Poster Session. 

Dee

Every Day is a Blessing!  

Looking Forward to #ASCO26

This year's ASCO Annual Meeting runs from May 29 - June 2, 2026 in Chicago. The theme this year is "The Science and Practice of Translation:Improving Cancer Outcomes Worldwide". 

I will be attending virtually, so I know I will experience FOMO when I see the postings by other cancer advocates on social media. I will not miss the long walks to get to sessions in the various buildings at McCormick. But I will miss meeting up with other cancer advocates in the ASCO Advocate Lounge and interacting with gyn cancer researchers who through the years have become friends. 

There are a few new ASCO Voices that I look forward to following this year on X including @DrBarbiOnc, @NazliDizman ,  @Ramila, @YGaritaonaindia  and @DrSAHAddad. I recommend you follow them too, 

I recently planned my attendance to focus on ovarian cancer session. 

Friday May 29  

Gyn Cancer Oral Abstracts 3:45-4:45 (ET)  Livestream 

Sat May 30 

Gyn Cancer Rapid Oral abstract Session 9am (ET)

Opening Session  Livestream 

ctDNA in Clinical Practice 9am Livestream

Rare Gyn Cancers 5:45 

Antibody Drug Conjugates 5:45 Livestream 

Sun May 31 

Let's Debate: Upfront Surgery Versus Neoadjuvant Chemotherapy in Advanced Ovarian Cancer

State of the Art: Therapeutic Strategies on the Horizon for Gynecologic Malignancies

Monday June 1 

New Horizons for Hereditary Cancer Syndromes  

Gyn Cancer Poster session  ( posters available day of session) 

 

I'm ready to listen and learn. 

If you are attending in person please use the #gyncsm hashtag in your social media posts. I'll be posting highlights from the meeting following ASCO. 

 

Dee Sparacio

Every Day is a Blessing!