We are happy to support our friends at the University of Pittsburgh by sharing an opportunity to be part of the University's HELPer (Health E-Librarian with Personalized Recommender engine)study. Dr. Heidi Donovan (@HeidiSDonovan) and Dr. Young Ji Lee (@YoungJiLeePitt) are funded by the National Library of Medicine to develop a virtual librarian system for ovarian cancer patients and caregivers. Please find information from Dr Lee below.
Currently many patients and caregivers who sought health information
on the web reported feeling overwhelmed by the vast amount of unfiltered
information and unqualified to determine the quality, and relevance of
the information. The
goal of HELPeR (Health E-Librarian with Personalized Recommender
engine) study is to build a virtual librarian system that suggest
information for ovarian cancer patients and caregivers reflecting their
needs. We are especially interested in what information
is most valuable to you when you are searching for online information,
support, and resources related to ovarian cancer.
We look forward to seeing you in July for our chat on Gyn Cancer Research News.
Tonight's chat topic was Side Effects of Surgery / Radical Hysterectomy. We welcomed twenty seven participants, some regulars and a few new to chats, to discuss this important topic. You may read the complete transcript here and find analytics here.
Below you will find some highlights for each topic question. Resources can be found at the end of the post.
T1: Most gyn cancers are treated with surgery. What types of surgeries can women diagnosed with, or at high risk for, the different gynecologic cancers expect?
A1: Surgery for gyn cancer usually involve
removal of some part of the female reproductive tract. The ovaries,
uterus, cervix, vagina or vulva. And may involve removal of more than
one of these organs as well as lymph nodes and other biopsies.
T1: Although rare, #sarcoma
can arise anywhere in the body, including a woman's reproductive tract.
Surgery is standard. But some women may get radiation or chemo
beforehand in hopes of reducing a large tumor that affects other organs.
#gyncsm
t1 as per @CancerDotNet Tumor removal, Debunking, Palliation Surgery, Laparoscopy surgery,
laser surgery, /cryosurgery, Different cancer types-ovarian cancer,
uterus cancer just naming a few.
@StopHPVCancer@AmericanCancer#gyncsm agree good resource! . Can be confusing especially in #cervicalcancer
but have your md review types and indications; many different options
depending on fertility preferences, invasive vs. precancer(severe
dysplasia); age;
T2: What are the differences between Minimally Invasive Surgery (MIS) and Open surgery? How does the type of surgery impact outcomes and side effects?
Minimally invasive surgery is either
laparoscopic or robotic surgery. It means small incisions, less blood
loss and fewer complications. But this has to be balanced with long term
oncologic outcomes. We still want patients to get the best possible
cancer surgery. #gyncsm
Yes patient factors must be considered as well -
prior surgery, location and size of the tumor. Surgical plans should be
individualized. #gyncsm.
There is now a lot of data supporting that for most women with #cervicalcancer
minimally invasive surgery leads to worse survival - the evidence is
from many sources including clinical trials and population data. #gyncsm.
Some surgeons are still advocating for MIS for
cervical cancer and in certain cases this might still be an appropriate
decision. But this requires shared decision-making. And of course if
your surgeons recommendations don't sound right get a second opinion! #gyncsm
T2 balancing long term goals of surgery
T2: There are no foolproof tests to detect uterine #leiomyosarcoma
before surgery. Women face greater risk of metastasis & death if
they have MIS with power morcellation. Less research on tumors cut by
hand. #gyncsm
T3: What are some important things for women to consider before surgery?
T3 personal risk. Recovery time. Medications
risks/benefits, advance directives, durable power of attorney, and support systems.
T3 - before surgery things for women to consider
are goals for treatment, personal goals, quality of life, what is she
willing to live with, long term side effects, risk of recurrence,
subsequent tx..
It may also be helpful to talk to your partner
WITH your healthcare provider to discuss each other's goals, desires,
needs, etc.
Yes for woman with #ovariancancer
outcomes are improved if they see a gynecologic oncologist with their
initial diagnosis. Yet nationally, fewer than half of ovarian cancer
patients ever see a gynecologic oncologist. #gyncsm
T4: Many women experience early menopause after having their ovaries removed during surgery. What are ways to manage menopause symptoms?
I've heard too many stories of women who were
completely unprepared for surgical menopause and their care team hadn't
really covered it. Really important also in previvor care and decision
making.
Some women may still be candidates for
menopausal hormone therapy even after a gyn cancer diagnosis if their
ovaries have been removed. It's worth discussing with your doctor.
surgical menopause- very critical/should be a
very important part of consent process; address what to expect and how
you could address specific symptoms ex. sexual function; vasomotor/hot
flashes; etc; medical vs non medical interventions depending on surgery
indication
T4: Some women may be able to take hormones, for
those whom hormones are not safe management can be difficult. Some
antidepressants can help, accupuncture may be worth a try and no one
ever likes this answer but... exercise may be helpful. #gyncsm
elimination of foods. Having a fan bedside to help with hot flashes. Air conditioning. Layered clothes. Acupuncture possibly.
4: Women with low-grade endometrial stromal #sarcoma may go on Megace or other drugs to control their hormones.
T4: A lot of women who have radical
hysterectomies will need to use dilators to keep their vaginas from
shrinking. Don't have sex if it's painful (unless you're into that).
Lubricant is your friend. #gyncsm
T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?
#gyncsm
numbness, bleeding, infection, lymph edema, bowel obstruction, dietary
concerns, One can recommend Palliative Care, medication, nutritional
consult, spiritual, and find a social worker to navigate, facilitate and
organize.
Yes, palliative care really important. These are
just the surgery side effects... also can be dealing with chemo,
radiation, and more...
There are some pelvic Physical therapy exercises that can help .
I had GI issues for a long time after my surgery. Diet changes ( higher fiber) helped me with that. #gyncsm
T5: Incontinence is my very least favorite side effect.
Lymphedema can be quite difficult to manage and
is typically worse for women who have had pelvic surgery and radiation.
physical therapy can help but is a commitment
many patients have sexual side effects (low
libido, painful intercourse) but patients often feel uncomfortable
discussing this with their physicians. a physical therapy referral for
this can be very helpful. #gyncsm
T5: For those of us who had vaginal cancers and
were single, the thought of dating can be daunting. Now that I'm 61,
however, I find men are less picky.
T6: What are some of the emotional side effects from surgery related to gyn cancers? What are some helpful resources and tips for these?
T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?
I know that a lot of prophylactic surgeries were either cancelled or delayed. #gyncsm
T1 In Maryland, many surgeries were delayed or postponed due to the crisis. #gyncsm
A7: I have not personally been affected but know
some who have had their preventive surgeries (i.e., BSO) delayed. Also,
others have told me their fertility preservation has been
delayed/postponed due to COVID-19.
#gyncsm#ayacsm#familyplanning#HealthComm
We end all our chats with TIL - Today I Learned. Here are a few from tonight.
TIL: About lymphedema after GYN cancer surgery, the long term physical and emotional side effects of surgery, and once again the lack of communication with some about early menopause. I appreciated all of your thoughts so much tonight! #GYNCSM
TIL that we as health professionals have some work to do to make sure that women are fully aware of the long lasting effects surgeries (and other treatments) may have. #gyncsm
This month the #gyncsm community will be discussing the Side Effects of Surgery and Radical Hysterectomy during our May 13, 2020 (9pm ET) chat. Most gyn cancers are treated with surgery.
Patients with a gyn cancer may have surgery to diagnose cancer, to stage cancer, to remove cancerous tissue or to alleviate side effect caused by tumors. While some surgery requires large incisions, there are also minimally invasive surgeries such as laparoscopic surgeries used for gyn cancers. (Cancer.net)
During Wednesday's chat we will cover the following topic questions:
T1:
Most gyn cancers are treated with surgery. What types of surgeries can
women diagnosed with, or at high risk for, the different gynecologic
cancers expect?
T2:
What are the differences between Minimally Invasive Surgery (MIS) and
Open surgery? How does the type of surgery impact outcomes and side
effects?
T3: What are some important things for women to consider before surgery?
T4:
Many women experience early menopause after having their ovaries
removed during surgery. What are ways to manage menopause symptoms?
T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?
T6: What are some of the emotional side effects from surgery related to gyn cancers?
What are some helpful resources and tips for these?
T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?
Christina and I look forward to having you join us on May 13th.
Thank you to everyone who joined us tonight for our Open Mic chat on COVID-19. We were happy to have the co-chairs of the SGO COVID-19 Task Force, gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), Bhavana Pothuri, MD, MS (@BPothuri) and patient advocate and Task Force member Annie Ellis (@stigetta) join us for this important discussion. You may find the transcript here and the analytics here.
We covered a number of different areas related to COVID-19 and the gyn cancer patient experience. Concerns and Difficulties
I’m having a really hard time deciding whether
to go for my next blood test and then infusion during COVID-19 risk. I
skipped one infusion already
I am concerned about surgery delays in light of COVID 19
Every surgical procedure potentially exposes the patient and a dozen HCW to #COVID19. #PPE is still an issue in many places. And access to testing has been an issue as well.
Not too bad since doing chemo gave a taste of isolation. But i miss going outside to stay active
Many lynch syndrome patients get annual tests,
especially colonoscopies, so having them put off by even a few months
can be stressful
The human connection is so important and what I love about caring for patients. With social distancing, it is challenging.
SGO Task Force - Guidelines and Care
@SGO_org
COVID-19 Task Force has been working around the clock to develop
strategies for doctors to continue to provide the very best care
possible to their patients during these difficult times
Goal is to keep patients safe and in this current crisis, that involves avoiding an infection with no cure.
SGO COVID 19 Task Force developing guidelines so no patients left behind/forgotten.
Hang in there! Cancer care is still being
prioritized, but changes are being made to minimize patients' risk of
exposure - especially important as we recognize that cancer patients may
be at high risk for becoming quite ill from COVID-19.
Please understand that you all are very important and we are making the best decisions we can during this time of greater infection risk and increased resource limitations. Thank-you for your patience and understanding #COVID19#GYNcsm#SGOCOVID19
Treatment / Follow-up Care
Depends on how you are feeling and what your treating #MD thinks whether risks are greater than benefit; These are hard decisions and need to be individualized.
I think the issue is that we don't know how long
this is going to last - and we certainly want to keep you on track for
your treatment. It's a difficult decision
Agree they can be stressful, but know it is more risky to come in now for a screening test.
Delays in cancer screening and health check ups
should only be temporary. Trying to balance risks of medical care with
exposures to COVID-19.
Yes in high #COVID
burden areas this is the case. But even in these areas we are able to
do cases that we deem are necessary. Working hard to maintain care so it
does not impact outcomes.
Telemedicine
But telemedicine allow us to keep very close tabs and communicate regularly with our cancer survivors.
Agree, @temkins. Telemedicine is a great alternative to deliver care for our patients and cancer survivors.
Something good has to come out of the COVID
crisis and telemedicine and the improved patient access and convenience
is going to be one of those positives.
Hope we will also see sustainable improvement in accessibility of second opinions with reimbursement for televisits.
Telemedicine is one option but there are different laws/regulations across states
This is important! We are limited in #telehealth by regulations - we need legislators to learn from this issue and expand our ability to provide care across state lines
Language differences are also a challenge;
interpreting clinic appointments is often challenging baseline, still
need to find more #equitable solutions in order for telemedicine to not create/increase disparities imo
Disparities
As we hear more about the rates of
infection/deaths of African Americans with COVID19, I worry we will
continue to be excluded from clinical trials due to existing
comorbidities.
#clinicaltrials are the key to innovation in oncology and enrolling a representative patient population is good science.
I hope this COVID crisis draws attention to the
disparities in outcomes for African-Americans as well as based on
economic status, geographic location, etc.
and serves as a call for equality for all
In light of the high mortality rates, the financial health disparities
will also become a factor as they will be faced with paying for costs of
burial for those without insurance.
And no, we shouldn’t wait to address this when
it’s all over, as some suggest. We should tackle it now. We should
recognize there are certain communities that are in greater need for
resources, testing, access now. Should not accept these worse outcomes
are inevitable.
Genetics Counselors
Genetic counselors across U.S. have been
shifting our clinics to telephone/video & finding creative
work-arounds to help patients access recommended genetic testing; we're
doing our best to keep everyone safe, but missing in-person support of
patients & families
Additional resources shared during the chat may be found at the end of this blog. Save the date for our next #gyncsm chat:
Wed May 13, 2020 9pmET . Topic: Side effects of Surgery
We'll end this blog with Tweets from two participants.
I want to give the biggest of thanks to all the health care providers and medical staff. You guys are amazing each and every day! In Irish, thank you is “go raibh maith agat” which means “may you have goodness” I wish all the goodness for you! ❤️
With the ongoing global coronavirus pandemic, we decided to "host" an Open Mic on Covid-19 instead of our original April topic about communicating with your health care professionals. We hope to host a chat on that topic later this year.
We know from our interactions on Twitter, Facebook and other patient platforms that gynecologic cancer patients and survivors have concerns about risks and questions about how Covid-19 will impact their care. From delaying a port flush or
follow-up scan to delaying treatment. Women are also wondering about clinical trial participation in the ever changing Covid-19 environment.
We are excited that the co-chairs of the SGO COVID-19 Task Force - gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), and Bhavana Pothuri, MD, MS (@BPothuri), and patient advocate Annie Ellis (@stigetta), will be joining us on Wednesday, April 8, 2020 at 9pm ET.
Please join us as we gather to share about Covid-19 and those impacted by gyn cancers. Bring your questions and share what's on your mind:
What are your greatest concerns surrounding the Covid-19 pandemic?
Has Covid-19 impacted your treatment and follow-up care?
Have you used Telemedicine to communicate with your health care provider?
Is being a gyn cancer patient/ survivor putting you at increased risk for Covid-19?
Has clinical trial enrollment / participation been impacted during the Covid-19 outbreak?
What measures have you taken to reduce the emotional issues related to the Covid-19 outbreak?
Where can you find the best online support and information available for cancer patients related to Covid-19?
What can the #gyncsm community do to help patients and healthcare providers through this difficult time?
We look forward to being able to spend time with each other while sharing important resources. See you Wednesday.
"Rare Disease Day takes place every year
on the last day of February (February 28 or February 29 in a leap year)—the
rarest date on the calendar—to underscore the nature of rare diseases and what
patients face. It was established in
Europe in 2008 by EURORDIS, the organization representing rare disease patients
in Europe. Rare Disease Day is sponsored in the U.S. by the National
Organization for Rare Disorders (NORD)®, a leading independent, non-profit
organization committed to the identification, treatment, and cure of rare
diseases." Did you know that many gynecologic cancers are considered rare diseases in the US by the NIH's Office
of Rare Diseases Research? They are:
On Wednesday, February 12, 2020 the #gyncsm community welcomed Dr. Timothy Marshall (@MarshallTF_PhD), Acting Executive Director of the Kean University, School of Physical Therapy in New Jersey, for our discussion on Cancer Pre-hab and Rehab. Thirteen participants join us for this important discussion. You may find a link to our complete transcript via @Symplur here and analytics may be found here. T1: What is cancer pre-habilitation? Is prehab important for those having surgery?
P1: Cancer prehabiltiation are interventions delivered after receiving a cancer diagnosis but before treatment begins #gyncsm
P2: One aim of prehabilitation is to establish baseline levels of
function and identify preexisting impairments or limitations, such as
limited shoulder range of motion, which could be a problem later on in
treatment #gyncsm
P3: A second aim of prehbailitation is to improve a patient’s muscle
strength and endurance, flexibility and cardiopulmonary health before
treatment begins #gyncsm
P4: This may be accomplished through an individualized exercise plan
with the goal of reducing the incidence and severity of
treatment-related side effects #gyncsm
P5: Prehabilitation may be important for someone who is about to
undergo surgery because strengthening the involved muscles before
surgery may enable them to better tolerate the trauma of surgery and
improve the recovery process #gyncsm
P6: Strengthening the heart and lungs before surgery may help the
patient’s heart and lungs better tolerate the surgery’s anesthesia and
reduce post-operative complications and reduction in length of stay in
the hospital #gyncsm
Prehabilitation such as discontinuation of smoking improves overall surgical outcomes. #gyncsm
T2: What is cancer rehabilitation? What is impairment driven rehabilitation?
P1: Cancer Rehabilitation refers to services delivered by healthcare
professionals to treat physical, emotional, & cognitive problems
that developed during cancer treatment #gyncsm
And can be provided concurrently with cancer treatment to mitigate side
effects/toxicity. This can improve tolerance to therapy. #GYNCSM
P2: The goal of cancer rehabilitation is to reduce treatment-related
side effects and improve function to promote independence. Physical problems appropriate for cancer rehab may include, but
not limited to, pain, swelling, weakness and loss of strength, decrease
flexibility, decreased inductance, lymphedema, fatigue, balance issues,
sexual dysfunction, problems swallowing #gyncsm
A1: Often patients with a new cancer diagnosis want surgery as soon as
possible, but in some cases improving fitness will improve surgical
outcomes without compromising oncologic outcomes #CancerPrehab#GYNCSM
P3: Mobility problems may include, but not limited to, difficulties
getting out of a chair or bed, navigating steps, walking, getting
dressed and showering #gyncsm
P4.:Cognitive & emotion problems may include difficulty
multitasking, difficulty thinking clearly, memory trouble, depression,
anxiety #gyncsm
T3: When is the right time to ask about cancer rehab and who should I ask? Will insurance pay for this service?
T3: As early as possible in the pre-op appointment process. Likely with
surgeon and oncologist. I think knowing what post-op life will look like
is helpful mentally, emotionally, and also enables better planning. #GYNCSM
T3. Thats absolutely right; as soon as possible! Ask you Oncologist, a
nurse, or any other healthcare provider managing your care #gyncsm
Agree. And usually insurance will cover this service. Some of what is
learned can carry over into other phases of the cancer continuum. #GYNCSM
T3: Cancer Rehabilitation services provided by licensed healthcare professionals are commonly covered by insurance #gyncsm
T3: Services provided by exercise physiologist, which usually consist of
exercise programs aimed at improving cardiovascular and muscular health
and function are often NOT covered #gyncsm
T3: Insurance coverage for prehabilitation is limited, spotty at best,
because it aims to prevent issues than treat ones that exist, which does
seem counterintuitive, but that is where we are right now #gyncsm
T4: Where are cancer pre-hab and rehab services offered? How would a patient go about finding these services in their community?
This is a great question. Because prehabilitation services are siloed
into different departments, you can rarely find them in one convenient
place. #gyncsm
T4 There are also programs like this Cancer Thriving and Surviving program, like this one in NJ
T5: How is it determined which exercise/other rehab program is best for each patient?
T5: This can be the tricky part. While the American College of Sports
Medicine published updated Cancer Exercise Guidelines in 2019, what
remains missing are tools for screening and referring to the appropriate
rehabilitative service #gyncsm
T5: Speaking as a patient, I hope the care team would consider ability
levels and help the patient find what works for them. I believe medical
professionals should stay up on exercise trends and have good, reliable
information on them! #GYNCSM
T5: I am involved in two projects, led by @NicoleStoutPT and @kcrov
to develop tools for clinicians and patients to guide individuals to
safe end effective rehabilitation and exercise programs to optimize
treatment related side effects & improved functio #gyncsm
T5: However, and generally speaking, if treatment-related symptoms are severe, impairments are presenting and function is limited making it difficult to participate in activities or daily living or exercise, rehabilitation services may be most appropriate #gyncsm
T5: Supervised exercise may more appropriate when treatment-related side effects and impairments are mild with minimal mobility issues and functional concerns; but, please check with your Oncologist or primary healthcare provider before engaging in any services #gyncsm
T6: Can a patient who may have finished treatment a year or more ago do
any exercise/rehab to help with the side effects of treatment?
Yes! We’ve seen good results with pelvic floor physical therapy.
T6: Yes! I heard a doctor at @MDAndersonNews
speak about exercise helping cancer related fatigue, even years after
treatment. I’m sure more benefits can come from a exercise/PT plan post
treatment! #GYNCSM
Yes post treatment exercise interventions can help reduce the severity of
post-treatment side effects and help regain strength/stamina/endurance
that may have been reduced during treatment #gyncsm
What also should not be lost or overlooked is the power of exercise for
improving emotional health ( i.e. reducing anxiety, feelings of
depression, etc) #gyncsm
Thank you Dr Marshall for taking the time to prep, participate and share such valuable information with our community. There will be no #gyncsm
chat in March.
Save the date for our next chat Wednesday April 8, 2020 at 9pm ET on
“Communication With your Healthcare Team and Asking for supportive
care”. See you in April!
Dee
Co-founder #gyncsm
