Gynecological Cancers and GYNCSM chat
The majority of Gynecological cancers–Ovarian, Uterine/Endometrial, Cervical, Fallopian tube, GTD (Gestational Trophoblastic Disease), Vaginal and Vulvar–are considered rare. Even so, through social media, women who have experienced these cancers have found each other. One opportunity to connect is a Twitter chat called #GYNCSM. It meets on the second Wednesday of the month at 9pm ET.
GYNCSM chat is for survivors, caregivers, advocates and– this is the unique part—healthcare providers. In addition to a survivor, Dee @womenofteal, and patient advocated, Christina @btrfly12, the chat has three medical oncologist moderators: Dr. Don Dizon (GYN/ONC), Dr. Merry J. Markham, Dr. Rick Boulay (GYN/ONC) and Dr. Anne Becker-Schutte, a mental health moderator.
Issues of Communication
Communications around cancer between physician and patient can be challenging . First, communicating effectively in crisis is difficult. The messenger must try to remain calm; the receiver is in shock and may not understand the message. Add in the medical jargon and no wonder physicians and patients aren’t on the same page.
“That happened to me too” was a phrase repeatedly stated during the #GYNCSM chat on March 11, 2015–that says to ask if a problem is systemic. Here are three insights into areas where communication breakdowns occurred between gynecological cancer patient and physician.
Several women had this to say:
#gyncsm T1. no one told me fertility options prior to hysterectomy.
— Amy Byer Shainman (@BRCAresponder) March 12, 2015
Research supports the fact that women receive inadequate counseling on the impact of cancer treatment on fertility, reproductive health and sexual function. In one study, one-third of women were dissatisfied with the quality and length of discussions regarding the impact of cancer treatment on reproductive health.
Assuming that women understand their bodies or that they would not be able to afford infertility treatment is unacceptable. Suffice it to say, when a person hears the word “cancer” it can interfere with hearing all the details of the treatment but it does seem odd that the words “You will never be able to have a baby” would not filter through the fog. It seems that some of these women were not properly educated or prepared for this loss. Nor were options to save their opportunity to procreate discussed.
In 2013, The American Society of Clinical Oncology provided a Clinical Update based on a review of research. In it they urge physicians to provide information on the impact of treatment on fertility and to advise patients on fertility preservation.
During the chat, several women described how they were ill-prepared for surgical menopause.
Unlike normal menopause, which occurs over a matter of years, surgical menopause (when the ovaries are removed) is instantaneous. Without the gradual reduction and compensation of hormones that occur during natural menopause, women undergoing surgical menopause experience severe symptoms of menopause, including night sweats, hot flashes, cognitive impairment and emotional disturbance. A 2014 population based cohort study confirms the experience of these women–cognitive functions were negatively affected by surgical menopause.
3) No Aftercare
Areas Where Lack of Aftercare Impacted Quality of Life
Hormone Replacement Follow-up
Impact of Radiation on Other Organs
One of the medical oncologists let these women know that they should have been told about these side effects. Then Dr. Matthew Katz, a radiation oncologist who was participating provided this guidance to these women.
What Post Treatment Pain to Expect
Two healthcare professionals support the importance of care after treatment and believe there is a real need for aftercare plans.
Mental Health, Depression and “Scanxiety”
One of the questions during the chat asked the healthcare professionals what surprised them while treating patients. One oncologist stated
Suffering in Silence
Many of these women have suffered in silence. Partly this has to do with societal stigma of cancers of the reproductive organs. In a 2002 study of communication about sexual function between physicians and nurses with women who have had gynecological cancer, most healthcare providers believed their patients would experience sexual dysfunction. Yet only one-fourth of the physicians and one-fifth of the nurses discussed this fact with their patients. Reasons given included “it’s not my responsibility” “embarrassment” “lack of knowledge or experience” and “lack of resources to provide support.” A 2012 review of the literature found that women who have experienced gynecological cancers have many sexual concerns but that physical issues were more likely to be studied than psychological and social issues. A 2012 study compared the quality of life for young women and women age 40 and up. The younger women scored lower on quality of life scales, including poor body image and negative impacts on their employment status.
One purpose of this chat is to share resources and support. Here are a few that were discussed.
One of the participants in the chat is a pelvic physical therapist. Her tweets illustrate the lack of appropriate communication between physician and patient with regard to aftercare and quality of life.
2) The North American Menopause Society(NAMS)
This website is a source of information for both healthcare providers and women going through menopause. There is a directory of Certified Menopause Experts throughout the US. There is even a free mobile app called MenoPro that helps women and their clinicians personalize their treatment menopausal symptoms.
This app was also recommended by a survivor to help gynecological cancer patients (and other cancer patients) with creating questions to ask your physician and allows recording of their answers. It has a tool to up keep with medications and a symptom tracker as well as a repository of Cancer.net videos, podcasts and articles which is updated automatically.
Participants recommended the #GYNCSM websiteas a resource. In previous chats, participants have shared valuable information that has helped them cope with the experience of a gynecological cancer diagnosis.
Where To Go From Here?
Sharing personal stories in a chat with clinician moderation and participation is a crucial first step to change. The status quo can best be summed up in these final tweets.
As Dr. Boulay so eloquently put it
T1. Nobody ever told more I would learn more from my patients than they would learn from me. #gyncsm
— Rick Boulay,MD (@journeycancer) March 12, 2015
*Based on #GYNCSM Chat March 11.