What I Wish I Knew

Last week I had the privilege to present at an online session of the Community Cares and ECHO Survivorship  Program.Joining me on the panel were two amazing advocates, a prostate cancer survivor,  Ralph Stowe and a breast cancer survivor, Yakima Deloach. The session began with a presentation by Dr S Manne on fear of recurrence.

Here is my response to a question we were asked.

What do you wish you knew then that you know now about your cancer experience?

This is a great question. For me  I wish I would have had a better idea of what to expect after treatment was over.  The nurses and my gyn oncs prepared me pretty well for what to expect after surgery and during chemotherapy treatment. But I felt like a rudderless ship after treatment ended.

·     They told me I would lose my hair in 14 days. I did. But losing your eye lashes and eyebrows and the hairs in nose took a bit longer.  No one told me just how long till hair other than what I call "peach fuzz" would grow in or when it would stop being so curly and go back to being straight like before treatment. 

·      I had neuropathy in my toes.  At times, I felt like someone was stabbing me in my toes. I learned to wear warm boots in the winter and shoes with rounded toe boxes. The neuropathy has stayed with me.

·      I was told I would be fatigued from the chemo but no one told me how long I would feel fatigued after finishing treatment. I went back to work 6 months after treatment and every day I got home I needed to take a nap. 

·      The hardest part though was that I found it hard to remember the names of things. I needed to describe an  object such as icicles by describing it - "water that is frozen and hangs off of gutters".  Or "white stuff you use to make a cake but not sweet" for flour.   I would write a blog post and leave blanks then come back later to fill in the words. Multitasking made remembering words and my chemo brain worse. 

 

I became impatient with myself that I wasn’t bouncing back quicker which leads to a second piece of advice I would give myself - be honest with myself and others. I needed to be honest about what I was feeling, emotionally and physically to get the help I needed.  I needed to be honest about being anxious or sad or fearful or vulnerable or tired or in pain or even happy to be here.  

 

If you are a cancer survivor what do you wish you knew? 

 

My next post will be a list of some of the Ovarian Cancer research being presented at ASCO this year. 

 

Dee

Every Day is a Blessing! 

Living with a Question Mark and Exclamation Point

The Washington Post recently released an interview with Susan Gubar, ovarian cancer survivor and literary scholar. Susan wrote the book Memoir of a Debulked Women, which I read a number of years ago, as well as a number of New York Times articles about her cancer experience.  This article was titled Survivor reflects on living with cancer and the ambiguity of remission (Nov 11,2023). As I read the article on my phone I thought of the similarities of our experiences. Susan is now 15 years out from her diagnosis.  

When asked about remission she called remission the sword of Damocles. My goodness that is so true. 

She then went on to share how she has been on a drug holiday for the past few years and her Remission? has become a Remission! . Why the switch to an exclamation point? It was because of her gratitude for the unanticipated time with her family. I never thought of Remission! before because for so long I was waiting for the "other shoe to drop". It took me a few years to work through those emotions of going from a person who may have five years of survival( The 5 year survival rate for women diagnosed with late stage ovarian cancer is 30%) to being a ten year survivor and then a  fifteen year survivor  and counting.  

Since I finished treatment for a recurrence on my liver and spleen fourteen years ago, it really has been just that - a time of ! . I have seen my son marry, welcomed two beautiful grandsons into the world and spent time with my husband traveling - Alaska, the National Parks, Fiji, New Zealand,Australia, England. I even got to visit a number of states on my way to visiting all 50 states. 

The extra time for me has also meant using the time for advocacy. It is my way of showing gratitude to my team of physicians and nurses at Rutgers Cancer Institute of New Jersey, to the researchers working to cure gynecologic cancers and also a  way of giving back to my teal sister community for their support. 

The next question Susan was asked dealt with anxiety. She spoke about "scanxiety" - It is a real thing by the way. Her way to handle it is with distractions - new recipes a good book etc. Like Susan, even after eighteen years of yearly check-ups and CA-125 testing, in the two weeks before testing , my world becomes one of doubt and anxiety for what may lie ahead. For those who may not remember,  I had a normal CA-125 (17) and felt good when I actually had lesions on my liver and spleen. So it is no wonder why even if I feel good, I have a feeling of trepidation every September. Now though, my test results appear quickly in my portal. No more waiting days to hear the results. My phone will show a text that there is a new result uploaded to MyChart. I am on reading the results in a matter of minutes. That is a good change since I was first diagnosed. 

If you get a chance read the article to get a better understanding how survivors like Susan and I deal with surviving a cancer diagnosis.

Lastly, I want to once again say how grateful I am for the excellent care I received and still receive at the Rutgers Cancer Institute of New Jersey. 

Happy Thanksgiving !

 

Dee

Every Day is a Blessing!

Pets and Painting From Diagnosis to Today - 15 years

As many of you know from reading this blog, on July 29, 2005 I was diagnosed with ovarian cancer.  I woke up from surgery and heard my gyn onc say the words, " I am sorry Dee, you have stage 3B ovarian cancer." Those words sent me down a road that I would have rather not gone down. A clinical trial consisting of nine carboplatin, taxol and selenium treatments followed that diagnosis. Then I faced more surgery and chemotherapy in 2008 when the cancer recurred on my liver and spleen. But somehow with faith, family, friends and treatments by the most talented, compassionate gynecologic oncologists, I am here today to celebrate my 15th Cancerversary. Thank you Drs. Rodriguez,  Gibbon and Song and the nursing staff at Rutgers Cancer Institute of NJ for the excellent care. 

During most of the fifteen  years of survivorship, I have had a dog. When I was first diagnosed, a pug named Kona greeted me when I got home from treatments and slept on the recliner with me, most times snoring more than I was. Sadly, he passed right after I had surgery for my recurrence.  At the time, I wasn't sure how I could get through my upcoming chemo without a pug on my lap.

After a year and a half later, both my husband and I knew the house was too quiet without a dog. So ten years ago, an All American dog, Amber entered our lives. She was full of energy and loved to jump. So Joe who owned the kennel where we took Amber for puppy training, suggested we train for dog agility.  That has been so  much fun these past few years . I learned something new and I met lots of other dog lovers. It was also an activity in which I totally forgot about my cancer. Amber has been by my side in the ring and on our long walks around town. I hope this continues for many years to come.

Another activity has grown over the past 15 years too. During my initial chemotherapy my son's friend gave me an acrylic paint kit.  I had stayed home while in chemotherapy when my blood counts were low, just like now during the COVID -19 pandemic. Painting helped me pass the time, took my mind off of the side effects and kept me calm as if I was meditating. I started with quilt designs ( I can't sew very well at all) , then some landscapes but I found I enjoy painting dogs the most - big dogs, small dogs, agility dogs and family pets. 

So on this my 15th Cancerversary, I share with you my love of dogs through the paintings I have created during these past fifteen years. 

Kona -a magnificent pug

McCoy -a Viszla

Winston

Coby

Silvio - my grandpup

Chick- an agility dog

Sassy- an agility dog

Princess - a Brittany Spaniel

Bling - an agility dog

Walter - my grandpup

Cooper - an agility dog

Ginger - Bull Mastiff

Gracie - agility dog

Smitten- agility dog

Tim - grand pup ( The only watercolor painting of a dog I have completed to date.)

Amber - my best friend and agility dog

Dee

Every Day is a Blessing!

Symptoms/Survivorship and the Impact of COVID-19 on Cancer Patients at #ASCO20

This post will complete my series of posts sharing some of  what I learned during the #ASCO20 Virtual Annual Meeting. Survivorship and symptom management research have been two of the important topics that I have followed through the years at the ASCO annual meetings in addition to ovarian cancer research. Below, I have also included a few highlight Tweets from the session on the impact of COVID-19 on cancer patients and survivors.

Early Palliative Care

Early Palliative care -Leukemia
Improved anxiety / depression with sustained benefits and improved EOL discussions
Stockler #ASCO20 #PalliativeCare pic.twitter.com/0luN6noPXH

— Dee Sparacio (@womenofteal) May 30, 2020

Early trial palliative care -
Stockler #ASCO20
EArly palliative care can help some phase 1 participants#ASCO20 #palliativecare pic.twitter.com/LBDyWlfigS

— Dee Sparacio (@womenofteal) May 30, 2020

End of Life Conversations

EMR and Serious illness
Stockler
EMR nudges increased conversations
Single study - may not be able to generalized to others #ASCO20 #Conversations pic.twitter.com/A4arNp133p

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Assessments

Geriatric assessments- Stockler
Reduced G3-5 AE's
Supports @ASCO guidance for GA to be used #ASCO20
Feasible to do assessment
What are longer term effects? #ASCO20 #survivorship pic.twitter.com/0CeebgPDou

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric intervention Stockler
Reduced toxicity
Improved chemo toxicity recommended implementing as std of care. Requires a trained nurse practitioner. #survivorship #ASCO20 #geriatic pic.twitter.com/NEzRoMU9qW

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Care to Reduce toxicity Stockler
Used QOL question
Early Treatment discontuation less
Less hospitalizations
Improved QOL #ASCO20 #geriatricancer pic.twitter.com/YAPCfKFZw4

— Dee Sparacio (@womenofteal) May 30, 2020

Survivorship Session Summary

Summary by Stockler -
Symptom and Survivorship
Good to see solutions are worth pursuing from early #PalliativeCare to the use of #geriatricassessment #ASCO20 pic.twitter.com/ukvIgjS26U

— Dee Sparacio (@womenofteal) May 30, 2020

The Impact of COVID-19 on Cancer Patients 

My first #ASCO20 watch party w/ #CCC19 friends.
Listening to Cancer & #COVID19 presentation by @NCIDirector. While trying to keep people safe from pandemic, we're creating issues w/ delayed/deferred care. What are long-term impacts at the population level but also at the N of 1? pic.twitter.com/5P54fN9AQP

— Stacey Tinianov (@coffeemommy) May 30, 2020

#ASCO20 @hemoncwarner presenting data from @COVID19nCCC - patients with #COVID19 and progressing cancer had more than a 5x higher mortality than patients with non-progressing cancer. pic.twitter.com/mnpC7AWc2s

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

Summary from @COVID19nCCC analysis of cancer patients with #COVID19 presented by @hemoncwarner. This data helps us better assess patients' risks & is important to have during shared decision making with our patients. #ASCO20 pic.twitter.com/XzgM7IJZXx

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

 I look forward to seeing my advocate and researcher friends next year in Chicago.

Dee
Every Day is a Blessing! 

#ASCO18 Twitter Highlights June 1 & 2, 2018

What does the first weekend in June mean for oncologists and cancer researchers throughout the world? It means it is time for the  ASCO Annual Meeting in Chicago. I was not able to attend the ASCO Annual Meeting in person this year so I am following the tweets my friends who are attending are sharing.  I was able to take part in a Guideline meeting held at the Meeting on Saturday afterbiib via Webex. So I was there in a sense.
As i the past I will be following the meeting via tweets by doctors , researchers and advocates who are attending. It is not as much fun or exhausting as being there in person but it allows me to keep up to date on the latest results. I'll share the Tweets I found most interesting in the next few blog posts.

I also have been getting e-mail updates from ASCO regarding breaking news and important topics from the meeting. Below the tweets you will find some articles from the ASCO Daily News and ASCO Post that you may find of interest.

First the Tweets:

MATCH TRIAL

MATCH trial results at #ASCO18: sobering reality of precision guided trial enrollment—not always a home run. pic.twitter.com/Pt0XkHSXGj

— Michael Fisch (@fischmd) June 1, 2018

Lynch Syndrome:

Lynch syndrome is common among patient with MSI-high tumors. Via @ASCOPost #ASC018 https://t.co/lJdGKBXvqU pic.twitter.com/bm7JeSxZ7z

— Dr Muin J. Khoury (@MuinJKhoury) June 2, 2018

A genomic study of more than 15,000 #tumor samples presented at #ASCO18 showed that people w/ tumors w/ MSI-H are more likely to have #LynchSyndrome & thus have an increased risk of developing certain types of #cancer . More @ASCOPost https://t.co/lrr0adtMU6 pic.twitter.com/cYQb1yjpKY

— Gil Morgan (@weoncologists) June 2, 2018

Survivorship

Excited to share our survivorship research at #ASCO2018, now published in @JAMAOnc. @AnilSoodMD @MDAndersonNews https://t.co/C0ua5g6rQ4

— Dr. Robert Dood (@DrRobDood) June 2, 2018

Endometrial Cancer

Important finding regarding the importance of weight and #cancer development - High BMI OR gaining large amounts of weight can increase risk of obesity-related cancers like #endometrialcancer #breastcancer #kidneycancer #gyncsm #ASCO18

— Shannon Westin (@ShannonWestin) June 1, 2018

#lcsm #gyncsm #hancsm #asco18 https://t.co/tgyvCJN979

— Danielle Pardue (@Actorielle) June 1, 2018

Clinical Trial Participation:

This highlights one of the many frustrating reasons why clinicians often cannot enroll their patients in #clinicaltrials despite trying, and wanting to! Eligibility criteria need to be more thoughtful, rather than reflexive, standard, or automatic #ASCO18
https://t.co/AL3lbQlmKp

— Thomas LeBlanc, MD (@tomleblancMD) June 2, 2018

ASCO POST or DAILY News Articles:

Lynch Syndrome:
www.ascopost.com/News/58898

Patient Communication:
https://am.asco.org/addressing-patient-communication-challenges

Patient Survivorship Care:
https://am.asco.org/patients-moderate-severe-anxiety-or-depression-symptoms-recognizing-assessing-referring-and

IMPACT Trial :
http://www.ascopost.com/News/58897?email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c

Patient Education and Quality of Care:
https://am.asco.org/patient-education-essential-element-quality-cancer-care
Economics and Value Discussion:
https://am.asco.org/bringing-economics-back-value-discussions

I'm looking forward to the next few days when there will be a greater emphasis on Gynecologic Cancers.

Dee
Every Day is a Blessing!

XII years

When I attended the Cancer Support Community of Central New Jersey's Wings of Hope event in June, I spent some time at the table for cancer survivors. There is a Japanese tradition that 1000 cranes will bring you luck. So survivors were able to string together origami cranes to celebrate our years of survivorship. I stood that day in a light rain stringing together my cranes.

WINGS OF HOPE 2017 -12 CRANES

Tomorrow (July 29, 2017) will mark the 12th anniversary of waking up from surgery and hearing,"You have Stage 3B Ovarian Cancer."

It is still hard for me to believe it has been that long.  When I was first diagnosed, even though I was told to not read the survival statistics, I did. I wasn't so sure I would make 5 years (30%).

When I recurred in 2008 I thought for sure I would never rid my body of the cancer. Yet, I did, due to the skills of the  amazing surgeons, gynecologic oncologists and nurses at the Rutgers Cancer Institute of New Jersey and the love and support of family and friends and other reasons I don't know. 

I am especially grateful for my husband, my children and their spouses, my grandsons and countless family and friends for their love and support these past twelve years. You have provided me with the best memories anyone could ask for. Thank you all.

Looking forward to blogging about my "cancerversary" for many years to come. 

Dee
Every day is a Blessing! 

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.


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

NJ Cancer Research

Every year there is an Annual Retreat on Cancer Research in New Jersey. This year's Retreat was held at the Student Center at Rutgers University in New Brunswick, NJ. The Retreat brings together researchers from across the state to share their study results and also includes a Public Forum portion,  focus sessions and a poster session. I'll give a short review on the Public Forum, the Keynote Speech and 3 posters related to ovarian cancer.

This year the Public Forum theme was Cancer Survivors:Advancing Care through Research.
 Public Forum. The Keynote Lecture for the Public Forum was given by Alred Neugut MD ,PhD, Columbia University . He spoke on research related to screening tests and public health issues, emphasizing the need for guidelines for tests,colonoscopy and mammography in particular,  being based on good data.

Dr Sharon Manne spoke on Couple-Focused Group Therapy for Women Diagnosed with Breast Cancer. Spousal support is the most important support a women diagnosed with breast cancer can have. Support groups are also very important but outcomes depend on the moderator. In a trial of Couple Enhanced Support Groups ( education and topic driven) vs regular support group  the participants in the support group reported less distress than those in the Enhanced Support Group.

Dr Shawna Hudson spoke on Prostate Cancer Follow-Up:Promoting Self-Care After Cancer Treatment Ends. In one study when asked when follow-up care should be provided by the primary care physician(PCP),  prostate cancer survivors responded that a return to the PCP should be later in the timeline. There is a  new NCSRC Primary Care Toolkit for breast /prostate /colon cancer .

Dr Brian Gonzalez spoke on A Vision For Personalized Care in Cancer Survivorship with a focus on the cognitive function and hot flashes in prostate cancer and the use of androgen deprivation treatment. He found that those men with a GG allele showed a worsening of their cognitive function and an increase in hot flashes when using ADT.

 Keynote Speaker - Jeffrey Engelman, MD,PhD  Harvard Medical School

Dr Engleman's talk Evolution of Resistance to Targeted Therapies focused on lung cancer - specifically those with EGFR mutations and ALK translocations. Most cancers do not have a single target. Recurrence will occur if 1) pathways are reactivated 2)the target is amplified or 3) lineage changes occur. Research on early vs late T790M mutation development showed that cells with late T790M showed the same expression profile as drug tolerant cells.

Posters

Racial/Ethnic Disparities in Ovarian Cancer Treatment and Survival - E. Bandera
(800 women diagnosed with OC  between 2000-2013)
"African-American(AA)  women were more likely to be diagnosed with advanced disease ( 26%), to have hypertension (73.9%) and renal disease ( 50%),  not have surgery and have an elevated post-treatment CA-125. Both AA and Hispanic women had high prevalence of obesity.
...  Our study shows that disparities in OC treatment and survival in AA persisted in a setting of equal access to care and after taking into account treatment and other clinical characteristics."

Dietary Quality and Ovarian Cancer Risk in African-American(AA)  Women - K.Pawlish
(415 OC cases and 629 age/site controls of AA decent evaluated three indexed-based dietary patterns. "Adherence to an overall healthy dietary pattern may reduce ovarian cancer risk in AA women, particularly among postmenopausal AA women"   

Identifying Gene/Protein Expression and Single -Nucleotide Polymorhism profiles (SNP ) in Tumor Samples Isolated from Patients with Ovarian Cancer - J.Sapiezynski
"A strong positive correlation between the resistance of cells and expression level of MDR1 gene was revealed. A strong correlation between resistance and the BCL2 gene was found in cells with the wild type of TOP2A genotype."


I am so pleased to see many different research groups working together on these important projects.

Dee
Every Day is a Blessing! 

A Rudderless Ship

In a recent #gyncsm chat we asked the question,
What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

My response was
Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support

I was great at staying on track with treatments and blood work and CT scans. Don't get me wrong it wasn't easy but I was focused on what I had to do.

Then I finished chemotherapy number nine and saw my gyn onc. She did her exam , checked by blood results and CT scan and said "See you in a month" What? That's it. After spending multiple 8 hours days each month for seven months at my cancer center, I was set loose. What do I do? Where do I go now? Sure I was happy to be disease free but I was worried about a recurrence. I didn't know how to live having had cancer.  My ship lost its' rudder.

I still needed a two hour nap every afternoon. My hair was not even at the peach fuzz state. I was pale and lacked eyebrows and eye lashes. I couldn't concentrate and reread many chapters in every book I attempted to read. There was only 2 month left in the academic year but I was still too exhausted to go back to teaching and work an 8 hour day. That would have to wait until the fall.

I started to research what others had experienced. I was thankful to find the book  Dancing In Limbo:Making Sense of Life After Cancer. I felt much better after finding out that I wasn't the only one who felt lost after treatment. I also found a local chapter of the National Ovarian Cancer Coalition (NOCC) and at their monthly meeting became friends with other women who were out of treatment. I found the classes and workshops and networking groups at the Cancer Support Community of Central NJ helped me move into my survivorship stage more smoothly.

I so wish someone had handing me an information  sheet about the physical changes I would experience or continue to experience after chemotherapy. But more importantly I wish someone would develop a survivorship plan with advice on dealing with the emotional and mental issues too.

What was the hardest thing you had to deal with when you finished treatment? 

SGO News via Twitter - March 19-20

Since I was unable to go to San Diego for this year's annual  SGO ( Society of Gynecologic Oncologists) meeting, I've been following the meeting's hashtag #sgomtg on Twitter instead.
Here are the tweets I favorited for the March 19-20th. 

Circulating tumor DNA shows prognostic value in ovarian cancer - hope we can find actionable items based on it #SGOmtg

— Jeff F. Lin (@JeffLinMD) March 19, 2016

ctDNA - Circulating DNA(https://www.genome.gov/27556716)

@womenofteal study showed presence of ctDNA after primary ovarian cancer treatment is associated w worse outcome. Now need 2 b able 2 act.

— Jeff F. Lin (@JeffLinMD) March 19, 2016

Incorporate supportive / palliative care from very start! QoL matters all the time!! #SGOmtg pic.twitter.com/RRJoL1rbnc

— Annie Ellis (@Stigetta) March 19, 2016

Dr Karlan and IOM report on ovarian cancer, we need to research ovarian cancer by subtype as orphan cancers #SGOmtg #ovariancancer @SGO_org

— Joshua Cohen (@JCohenMD) March 19, 2016

Genetic testing recommended for ALL women with personal history of #ovariancancer #SGOmtg pic.twitter.com/0usUk9vpFk

— Annie Ellis (@Stigetta) March 19, 2016

Report in Brief for Ovarian Cancers: Evolving Paradigms in Research and Care. https://t.co/TWNPUSEUOg #SGOmtg pic.twitter.com/gL7U8d5QNX

— Annie Ellis (@Stigetta) March 19, 2016

We need "prospective studies to identify survivorship issues relevant to ovarian cancer". Yes we do!!! #SGOmtg #gyncsm @SGO_org

— Elizabeth Dickson (@edicksonMD) March 19, 2016

All women with advanced #OvarianCancer should receive genetic testing, investigator says #SGO2016 #SGOmtg https://t.co/0xV2ntZwrH

— Laura Nikolaides (@NikolaidesLaura) March 20, 2016

Berchuck: SNPs associated with ovarian cancer risk contribute to the racial disparity in incidence. #SGOmtg pic.twitter.com/tKvQhH3qPl

— Annie Ellis (@Stigetta) March 20, 2016

SNP = single-nucleotide polymorphism ("most common sequence variation in the human genome is the stable substitution of a single base" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2410167/)

I appreciate the ability to have interactions with the gyn oncs and other advocates attending the meeting.

Check back on Wednesday for the tweets I found most interesting for the last two days of the meeting.

Dee
Every Day is a Blessing!

It’s All About the Guidelines - Cancer Survivorship Research Conference Part 3

One of the most informative plenary sessions was titled Guidelines/ Implementing Survivorship Care.  With the number of cancer survivors estimated to be 14 million  by the ACS the need to have guidelines for implementing survivorship care plans is important. There are four main guidelines each with a different audience.

LiveSTRONG

LiveSTRONG recommends a process for care called Essential Elements which can be used by everyone. http://www.livestrong.org/pdfs/3-0/Essential-Elements-Definitions_Recommendations

NCCN

NCCN guidelines cover:

Anxiety and Depression

Cognitive Function

 Exercise

Fatigue

 Immunizations and Infections

Pain

Sexual Function (female/male)

Sleep Disorders  

This guideline is written for the healthcare professional so a link for patients is unavailable.

ASCO

ASCO published the first of its Survivorship Guidelines in April of this year. They focus on Anxiety and Depression, Neuropathy, Fatigue and Fertility Preservation and are meant for healthcare providers. They can be found at http://www.asco.org/guidelines/survivorship

ACS

The audience for the ACS guidelines is the primary care physician. The first guideline is for prostate cancer can be found at http://www.cancer.org/cancer/news/news/longterm-care-guidelines-for-prostate-cancer-survivors . Additional guidelines will be developed for breast, colon, lung, cervical , ovarian , endometrial , uterine, head and neck and  melanoma.

After learning about these guidelines we heard a discussion of these plans by Julia Rowland, NCI and Doctors Ganz, Wender and Farber. They raised points about the challenges of implementing survivorship plans, the need to train PCPs regarding survivorship issues and the need for evidence based research to show whether or not patients with survivorship plans do in fact have better outcomes.

Dee

Every Day is a Blessing!