The #gyncsm community discussed Risk of Recurrence, Second Cancers, and Other Diseases for those diagnosed with a gynecologic cancer on May 12, 2021. We had twenty-six participants and 1.330 Million impressions - see more analytics here and you may read the transcript here.
Some highlighted Tweets from the chat may be found below each question. You will also find resources listed at the bottom of this post.
T1: What is the risk of recurrence for the main types of gynecologic cancer? Which gyn cancers have the highest recurrence risk?
- According to @CancerCenter "An est. 35% of patients w/invasive #cervicalcancer develop persistent/recurrent disease following treatment. The recurrent cervical cancer rate is lower for those w/ early-stage disease. Most recurrences occur within 2 years of treatment."
- The recurrence rate for #ovariancancer is very, very high. It can be hard to talk about with patients - and some don't want to think about it - but it also surprises too many that didn't get an open discussion after initial treatment
- Endometrial - recurrence rates for patients with early-stage disease range from 2–15% and reach as high as 50% in advanced stages or in patients with aggressive histologic condition. (70-100%) recurrences occur within 3 years after primary treatment from a 2011 study
- vulvar cancer - Most recurrence occurs 2 years
after treatment in women with inguinal lymph node involvement (32.7%)
versus those without (5.1%).
#gyncsm
- Ovarian cancer has the highest recurrence rate overall -85% (occurring in 25% of patients with early-stage disease and >80% of patients with advanced disease.)
- There are many variables to consider (tumor stage & subtype, initial treatment, if there were tx breaks). For instance, cervical cancer is more likely to not recur if chemoRT is completed within 8 wks of starting.
T2: What is known about reducing one's risk of recurrence? How are cancer survivors monitored for gyn cancer recurrence?
- Follow-up care is imperative for preventing recurrence of #cervicalcancer. That includes exams, imaging, and blood work. Exercise and diet may help along with smoking cessation.
- I have heard that exercise may be beneficial in lowering one’s risk of recurrence
- There are only so many things that one can control when trying to reduce risk. Some things we know - Find a way to be active that works for you. Stop smoking. Lots unknown. A long-term study in AZ was looking at eating, activity and more for ovarian cancer survivors.
- While we all want to be in the group that never recurs, I think it's important to let people know the possibility. Nothing stops the shock of actual recurrence, & living in fear is hard - to be sure - but since it's likely with #ovariancancer, facts are important.
- Survivorship plans are important for continued monitoring after initial diagnosis. The balance is listening to your body and getting things checked out without freaking out.
- I know I was told very clearly by my first gyn Onc that I had no chance of recurrence, but here I am 4x later. I just hope everyone knows the possibility honestly. #gyncsm
- T2 monitoring for recurrence: Regular exams; education about symptoms to report; routine imaging not always indicated but depends on individual plan; tumor markers if appropriate. Consuder for Surveillance plan - individual pros and cons/ patients preferences
- I think survivorship plans are very important its been 10 years since my diagnosis and hardly any of my physicians followed mine because I had endometrial cancer they didn't think it was important after the hysterectomy. If only they knew
- Kind of back to preventing recurrence. But what treatment we get initially, if we have a gynonc (or not), & what type of surgery can all matter as well.
T3: Many cancer survivors report that fear of recurrence impacts their survivorship. What are some tips for dealing with the fear of recurrence?
- We have so many great nuggets of advice on our blog (search for recurrence). A few are "Know your existence," "Own your story," Set boundaries, ask for help, journal it out, and take care of your mental health. https://t.co/25m45zv2WD #cervivor
- walking my dog always keeps me chill & works for me…. We both enjoy it
- There are some good resources - videos, podcasts, literature - about dealing with the fear of cancer recurrence because so many experience it. Know you are not alone. #gyncsm one via @CancerDotNet https://t.co/aFzmrUlrrP
- Latino cancer survivors face a tough journey. Our leader, Dr. Amelie Ramirez of @UTHealthSA, is helping launch a 6-year @theNCI study to find new ways to help Latino cancer survivors heal, recover, and stop cancer from returning!
- I think the most important thing is to show those of us who LIVE with multiple recurrences and still make a positive impact and have a happy life! It’s tough, but I’m much better off than those frozen in fear!
- Incredibly important to address! Any plans for education and surveillance we add as MD we should be recognizing how this creates anxiety! and really should be coupled with how to get resources on coping, normal expected anxiety...
- Here is the facebook page for Survivor Slimdown https://t.co/tVeEbxSI3N
T4: What are some of the secondary cancers that those with a gynecologic cancer should be concerned about? What is the role of genetics and family history? What about secondary cancers related to treatment?
- We can still get cancers that others get. According to @AmericanCancer, #cervicalcancer survivors are at higher risk for: mouth/throat, larynx, anal, vulvar, vaginal, lung, bladder/ureter, stomach, colorectal, pancreas, and acute myeloid leukemia.
- As we learn more and more about genetics, we learn more about what caners are connected and run in families. Know your family history if you can. See if multi-gene testing is advised as more is known.
- From @EKing719 in women who have had Hpv-related gyn malignancies there is a risk of anal cancer . Check @FarrahFawcettFN https://t.co/DPVvvpaqzF and at https://t.co/bheTVoAKCu
- There have been conflicting study results but generally we don't think that radiotherapy increases your risk of rectal cancer for instance. In rare instances, you can develop sarcoma about 10 years after radiotherapy.
- for basics also making sure survivors keep up with screening depending on phase in cancer care and age re #breastcancerscreening #colorectalcancerscreening #lungcancerscreening // know family history// refer for genetic counseling!!
- those of us with genetic mutations have to deal with risk of getting yet another cancer and decisions on how to prevent that
- HNPCC or Lynch Syndrome While HNPCC poses the greatest risk of colorectal cancer, women with HNPCC have about a 12 percent lifetime risk of developing ovarian and a 40-60 percent chance of developing uterine cancer.” https://t.co/QbGQXoXRD5
- Ran across this while doing chat prep: Meta-analysis and retrospective pharmacovigilance study of MDS and AML in patients receiving PARP inhibitor treatment https://t.co/LXHXHi7T6K
- It can be heavy to talk about all the additional risks, but like someone said, knowledge can help one deal with the fear and not be blind-sideded if something does come up.
- Very important point! Important to know for patients who on your medical team can best help quarterback getting appropriate tests scheduled, ordered up to date etc- sometimes gyn onc or med onc or PCP or cancer genetics team . @FacingOurRisk - great resources here!
T5: Are there other physical and mental health conditions that being diagnosed with and treated for gynecologic cancers increase the risk of experiencing?
- many already have a list of conditions prior to cancer. This just adds to the pile. Can be hard to assess what is causing what.
- PTSD is often experienced in our community from internal radiation. It may take someone years to process through the emotional toll - as for physical, there are various side effects from lymphedema, infertility, osteoporosis, gastrointestinal issues, etc.
- For women who were younger who went into surgical menopause due to surgery, this can create many physical & psychological issues.
- Issues related to sexual function; chronic changes in urinary and GI function after surgery, chemo and or RT.; early referring to physical therapy, urogyn, GI nutrition.... need to ask and talk about even if no easy answers.
- In my own situation it has increased my anxiety and depression at times especially in regards to my infertility.
- Confounding this is that the rate of #ovariancancer is higher in those who have had #PTSD prior to diagnosis. And, we know from the #ACEs study, those of us with trauma in childhood have increased risk of many diseases, including cancer.
- one of my concerns are potential cardiac issues due to cancer treatment combined w surgical menopause.
T6: What impact does having had cancer have on risk for and severity of COVID-19 and other non-cancer related diseases?
- Most research shows that having cancer increases your risk of severe illness from COVID-19. Other factors include a weakened immune system, older age, and other medical conditions.
- you can find resources at @GYNCancer site https://t.co/fvRX6dpubK
We end our chats with Today I Learned (TIL) . Here is a TIL from tonight's chat.
TIL:
Hard conversations are... hard. But let's not avoid them. Cancer stories
are not all "inspirational/positive" but they are all important and
provide so much value. Thanks to all who share their cancer truths.
We look forward to you joining us at the next #gyncsm chat on Wednesday, June 9, at 8pmET (new time for 2021) when we’ll discuss “GYN Cancer Research News” from #SGOMtg and #ASCO21
Dee and Christina
#gyncsm Co-Founders
Resources
@AmericanCancer - Can I Do Anything to Prevent Cancer Recurrence?
https://www.cancer.org/treatment/survivorship-during-and-after-treatment/understanding-recurrence/can-i-do-anything-to-prevent-cancer-recurrence.html
HealthDay - Obesity And Overweight Associated With Increased Risk Of Developing Several Types Of Cancers
@sloan_kettering
MMSKCC - 6 Tips for Managing Fear of Recurrence
Meta-analysis and retrospective pharmacovigilance study of MDS and AML in patients receiving PARP inhibitor treatment
Ovarian Cancer Patients at Higher Risk for Mental Illness
@GYNCancer Foundation for Women's Cancer - Education Courses https://www.foundationforwomenscancer.org/events-courses/upcoming-education-courses/
@GYNCancer - Covid resources
Post-treatment surveillance and dignosis of recurrence in gynecologic malignancies - SGO recommendations
American Cancer Society - Second Cancers after Endometrial Cancer
@CancerDotNet - Heart Problems
