Survivorship
Episode Notes
Survivorship definition:
Office of Cancer Surveillance (OCS), National Coalition for Cancer Survivorship (NCCS) definition
Patients with cancer defined as survivors from the time of diagnosis onward
goal of encompassing the whole individual and their care journey
Survivorship care starts at time of diagnosis, and can include people on therapy (especially in the era of maintenance therapies)
Recommend including an explanation to patients that this term is meant to identify the community of people who have a history of cancer.
Survivorship is a phase of active care, not just a passive monitoring period.
Care includes preventative health care, management of side effects/toxicities, symptom management, as well as surveillance for recurrence.
Includes caregivers and families, who often experience distress, role changes, and financial impacts.
Incorporating caregiver support into survivorship programs can strengthen outcomes for patients.
Creating a survivorship care model
2024 national cancer survivorship standard
Meant to help health care systems create or align their programs
Three realms: health system policy, health system processes,health system evaluation and assessment.
NCCN guidelines for survivorship: 6 components to care for the cancer survivor
Surveillance of patients for recurrence or development of new malignancies
Testing for late and long-term effects of cancer and treatment
Preventive care
Management of cancer-related challenges including referrals
Coordinated care between providers
Planning for the future
Including advance care planning, fertility planning
Surveillance visit recommendations
NCCN and SGO provide surveillance recommendations by cancer site
SGO guidelines updated in 2017 (Salani et al): can be used in conjunction with the NCCN guidelines
These organizations recommend less intensive surveillance than often performed: studies indicate that providers conduct surveillance more frequently, with more studies performed, than recommended
For most disease sites, imaging is usually not recommended in the absence of symptoms. This is an important counseling point: many patients expect “routine scans” and may feel nervous when imaging isn’t ordered.
Counseling about symptoms of recurrence is crucial at surveillance visits
Set expectations early - that history, review of symptoms, and pelvic exams are the recommended data pieces during surveillance - to help reduce anxiety and build trust.
Endometrial Cancer
Most recurrences occur within 3 years after primary treatment
Frequency of surveillance visits recommended depends on disease risk level
Low risk: visits recommended every 6 months during the first year, every 6-12 months during the second year, and then annually.
High risk (advanced stage or high risk histologies): visits recommended every 3 months during the first two years, every 6 months from year 2-5, and then annually thereafter.
For both groups, after 5 years, annual visits are recommended.
Can be performed by Gyn Onc or OBGYN.
Include history and physical with a pelvic exam.
Vaginal cuff is a common and high risk area of recurrence
Imaging should be reserved for patients who have worrisome symptoms or physical exam findings, to confirm recurrence and to localize the site of disease.
CA-125 can be helpful in patients with high risk disease or who had an elevated CA-125 before treatment, but shouldn’t be performed routinely.
Cytology as a means to detect vaginal cuff recurrences is not recommended, as it does not improve the ability to detect recurrences compared to history and physical exam.
Uterine Sarcoma
Unique in that imaging is recommended every 6-12 months initially given the very high risk of relapse. Frequency dictated by histologic type, grade and stage
Ovarian Cancer
Epithelial:
Visits every 2-4 months for the first 2 years, 3 to 6 months for the next 3 years, then annually after 5 years.
Visit components: thorough history and physical exam, including pelvic.
Tumor markers are also recommended for trending. Check out ovarian cancer part 3 - late stage and recurrent for more regarding CA-125 monitoring.
takeaway: we don’t recommend diagnosing or treating recurrences based on an isolated CA-125, but it can sometimes be the first marker of a recurrence, and can be supportive of other findings.
Typically, changes in CA125 lead to imaging which can detect recurrence.
Imaging is not routinely recommended for asymptomatic surveillance, but should be performed when clinically indicated.
As above, this varies by provider.
Routine imaging is associated with an almost doubling of the cost to the healthcare system.
Shared decision-making matters: balance guideline-based care with patient-centered counseling.
Malignant germ cell tumors
Higher recurrence rate, more frequent evaluation schedule recommended
Surveillance with clinical evaluation, tumor markers as applicable, and imaging with CT C/A/P is recommended every 2-3 months for the first two years, every 6 months during year 3, and every 12 months thereafter.
Malignant sex cord stromal tumors
Recommendations include a physical exam and tumor markers every 6-12 months for low-risk disease and every 4-6 months for high-risk disease.
Surveillance visits continue indefinitely as recurrences with these tumors can occur remotely from primary treatment
Imaging is reserved for patients with symptoms, elevated biomarkers, or suspicious findings on physical exams.
Borderline ovarian tumors
Follow recommendations of screening interval based off those for ovarian cancer except for two cases
In patients with stage 1 borderline tumors that undergo recommended surgical management, BSO and hysterectomy, there is no indication for further surveillance aside from an annual visit.
If they had fertility sparing treatment, serial pelvic sonography is recommended typically every 6- 12 months, with the addition of tumor markers only if clinically warranted.
Cervical Cancer, Vaginal Cancer, and Vulvar Cancer
Same surveillance intervals for cervical cancer, vaginal cancer, and vulvar cancer
3 to 6 months for the first 2 years, then every 6 to 12 months for the next three years, before being seen annually based on recurrence risk.
Surveillance heavily relies on history and physical
in cervical cancer, 50% of recurrences will present symptomatically.
Cytology and Cervical Cancer Screening
Retrospective studies have not shown cytology alone to be very sensitive for recurrence, with limited additional benefit on top of physical exam.
In the SGO guidelines, cytology listed as an option to perform annually, however was noted to have insufficient evidence to use for detection of cancer recurrence. Patients who are immunocompromised may derive greater benefit from cytology.
Accuracy of cytology results may be decreased in patients who have previously received radiation.
Vulvar and vaginal cancer have limited available data on recurrence rates and indicated surveillance, and follow cervical guidelines
Preventative care - people diagnosed with malignancies, including gynecologic malignancies, are more at risk for development of health conditions.
Screening in Surveillance visits
Take into account original cancer etiology and therapies received.
Important history questions include exercise, nutrition, weight gain, PCP attendance, thorough review of systems.
NCCN: survivorship assessment with 1-2 targeted questions per organ system can be a helpful framework, with specific suggestions for referrals and interventions if patients screen positive to any of the questions.
See below a reference for a helpful template for surveillance visits from SGO
Bone health
Gynecologic cancer treatments, including ovarian suppression, oophorectomy, and radiation, all increase the risk of bone mineral density loss and subsequent fractures.
Hassan et al
BRCA mutation carriers that underwent BSO before age 50, 62% were affected by osteopenia and 9% by osteoporosis.
Sobecki et al, 2021
Patients who undergo premenopausal oophorectomy experience bone density loss within 1-2 years!
Provides recommendations for bone mineral density screenings, like DEXA scan for high risk patients within 1-2 years following treatment.
High risk
premenopausal patients who undergo BSO, patients who underwent pelvic radiotherapy, and patients with an increased baseline fracture risk.
incorporate standard risk calculation scoring tools to identify patients at higher fracture risk, including the FRAX score.
CT scans are another way to assess bone mineral density.
2022, Sobecki et al: opportunistic CT scan bone mineral density measurements (i.e. using scans performed for surveillance) can be employed to identify patients who warrant definitive imaging with DEXA.
Discuss strategies to maintain bone mineral density, like weight bearing exercise and appropriate vitamin D and calcium intake, as well as strategies to reduce fracture, like fall prevention.
Sexual health
Sexual function is affected in 90% of gynecologic cancer survivors: can be impacted by physical symptoms, anatomical changes, interpersonal relationships or patients’ perceptions of their bodies and self-image.
Many times, screening for and identifying the problem, normalizing it with the patient, and referring to a specialist is incredibly impactful.
Consider referrals for issues out of your scope
Can incorporate individual and couples counseling, PFPT
All patients, whether sexually active or not, should be asked about genitourinary symptoms, including vulvovaginal dryness and irritation.
Management of menopausal symptoms in survivors
Vaginal dryness
Nonhormonal: vaginal moisturizers, (Vitamin E, hyaluronic acid, natural oils), lubricants (silicone based or natural oils are recommended in this population) for sexual activity.
Hormonally sensitive cancer > can try above as the first line.
Counsel patients on the possibility of light spotting with use.
Vaginal estrogen
Most data about the safety of vaginal estrogen in the setting of hormonally-responsive cancers comes from breast cancer.
ASCO 2025, SEER-Medicare abstract
Nearly 19,000 patients with breast cancer
Showed improved overall and breast-cancer specific survival in patients who used vaginal estrogen, which adds to the data that this is safe.
Circulating levels of estrogen in patients with vaginal estrogen generally remain in the menopausal range.
Black box warning on vaginal estrogen about a potential increased risk of breast and endometrial cancer.
This black box warning is often confusing for both providers and patients.
Available evidence supports safety in gynecologic oncology survivorship.
Menopause: surgical, chemical (ovarian suppression), natural menopause
Induced menopause is associated with increased risk for osteoporosis, heart disease, and cognitive decline/dementia.
Vasomotor symptoms: sudden sensation of extreme heat in the upper body, typically lasting 1-5 minutes
These symptoms typically occur quickly (within 24-48 hrs) in pre-menopausal patients who have undergone a BSO.
Additional symptoms: atigue, changes in mood and libido, cognitive changes, difficulty sleeping, appetite and weight changes.
Treatment of vasomotor symptoms in gynecologic cancer survivors
Recommended to consider a trial of nonhormonal options first in postmenopausal patients with bothersome vasomotor symptoms and a history of gynecologic cancer
Non hormonal: SSRIs and SNRIs, gabapentin, clonidine, and NK3 receptor antagonists.
Paroxetine 7.5 mg daily is FDA-approved for vasomotor symptoms and can be good for patients with concurrent depression and/or anxiety.
Venlafaxine is one of the most studied agents as an off-label treatment.
Clonidine in patients with hypertension not controlled with other meds
Gabapentin for those with neuropathic pain and/or insomnia.
Fezolinetant, a first-in-class NK3 receptor antagonist, was FDA approved in 2023 and can be a good option in those that SSRIs/SNRIs are not tolerated.
Non-pharmacologic, behavioral and lifestyle interventions - limited efficacy, can supplement other management
Cooling measures
Weight loss
Mind-body interventions, like paced respiration, mindfulness-based stress reduction, cognitive behavioral therapy (CBT), and avoidance of triggers (alcohol, spicy foods, caffeine, and hot beverages)
Systemic hormone administration
Hormone replacement therapy: administration of hormones to premenopausal patients who have undergone premature menopause from any reason, with an attempt to restore physiological levels of hormones.
Hormone therapy: administration of hormones to postmenopausal patients, at lower doses, for the purpose of treating bothersome symptoms of menopause.
The Women’s Health Initiative
Pinnacle study evaluating hormone therapy for chronic disease prevention in postmenopausal patients
Demonstrated an increased risk of breast cancer, coronary heart disease, stroke/VTE, with decreased fracture risk.
Patient population and hormone administration differed than current practice, reflecting a higher risk population: older patients, higher doses of hormones
The North American Menopause Society (NAMS) with specific sections of consensus statements discussing patients with cancer
Hormone therapy remains the most effective treatment for vasomotor symptoms (VMS) and genitourinary syndrome of menopause
Hormone therapy has been shown to prevent bone loss and fracture.
Systemic hormone therapy in cancer survivors
Treatment should be individualized using the best available evidence to maximize benefits and minimize risks, with periodic reevaluation of the benefits and risks of continuing therapy.
Recommendation: to use the lowest possible dose of therapy for the shortest period of time to achieve symptom management.
Age at diagnosis, tumor biology, and patient values all weigh heavily in hormone discussions.
Deeper dives into hormone therapy, including dosages
Hormone therapy by disease site
Endometrial cancer is often hormonally responsive, very challenging for hormone therapy discussions
Hormone administration traditionally avoided
2006 RCT. GOG: closed early due to results of WHI. Among enrolled patients, risk of adverse events among those with HT 2%, which advocates for the safety of estrogen administration.
Retrospective data demonstrates potential safety of leaving the ovaries in situ for premenopausal patients with early stage, low grade EEC.
In later stage or higher grade disease, there is very little data to inform us, and so at this time, generally hormones should be avoided.
Ovarian cancer
less hormonally responsive disease. Use of hormone therapy after treatment for most epithelial ovarian cancers does not seem to increase the risk of recurrence
Most studies demonstrate a survival benefit in patients who receive hormone replacement therapy after treatment for ovarian cancer.
In hormone-dependent ovarian cancers (granulosa cell tumors, low grade serous, and endometrioid), avoid administration if possible
Borderline serous tumors who have had complete resection, especially those with early-stage disease
hormone replacement therapy can be safely prescribed. Limited data to guide choices.
Cervical cancer, vulvar and vaginal cancers
Non-hormonally driven diseases: hormone therapy and hormone replacement therapy should be considered, especially in premenopausal patients.
HRT after prophylactic BSO in premenopausal patients
Hereditary cancer episodes with additional detail
Takeaway: for patients with no history of malignancy but who underwent prophylactic oophorectomy for cancer risk reduction, hormone replacement therapy is safe, effective, and should be routinely prescribed.
True for patients with and without genetic predispositions to cancer
Dose these patients appropriately with goal to replace physiologic hormone levels
If patients have a concomitant breast cancer history > manage in conjunction with the patient's breast oncologist.
Creating a survivorship toolbox:
Survivorship Care Plans
Structured documents that summarize a patient’s diagnosis, treatments received, and recommended follow-up, which can be shared with both patients and their other healthcare providers. While uptake in gynecologic oncology is still limited, they have been shown in other cancers to improve coordination and patient satisfaction.
Helpful resources for patients
Resources for Provider
[ ] Foundation for Women’s Cancer Survivorship Toolkit: https://foundationforwomenscancer.org/resources/survivorship/
[ ] Surveillance and Care of the Gynecologic Cancer Survivor: https://pmc.ncbi.nlm.nih.gov/articles/PMC4649722/
From surveillance guidelines paper from SGO. Salani et al. 2017
Reference List
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