Sexual health is an important concern for patients, especially as rectal cancer rates in younger patients are climbing. Treatment modalities like radiation therapy have sexual side effects, which can interfere with quality of life for many patients. There is a lot of inconsistency of care around sexual health-related aspects in the U.S.: Some clinicians and hospitals do a great job of informing the patients what to expect and how they can manage side effects, while others don’t talk about the subject at all.

For example, some centers promote and encourage the use of vaginal dilators in the body while the female patient is exposed to pelvic radiation – this is supposed to reduce radiation exposure to vagina, while other centers fail to even mention the use of dilators at home to prevent or reduce vaginal stenosis.

Sexual dysfunction following surgery is another aspect that is not discussed very well. The prevalence of sexual dysfunction following colon or rectal cancer resection seems to vary quite a bit, and I have heard this is more a problem in men than women.

Here is research being conducted that could help patients manage their sexual health.

The OPERa Study

NCT04893876

The main aim of the trial is to collect information on the impact of Low Anterior Resection Syndrome (LARS), Sexual and Urinary Dysfunction (SUD), emotional/financial distress, and patient activation on long-term post-treatment Quality of Life (QoL) in North American rectal cancer patients after rectal surgery.

LARS can be a bothersome and life-altering side effect of restorative rectal surgery to remove the cancer, and LARS includes increased stool frequency, incontinence, and difficult pooping. The reason this study is underway is because information on actual rates of these side effects, the risk factors, and prognosis are lacking in this patient population.

This 20-site North American, observational, prospective, 1,200 patient cohort study uses validated patient reported outcome measures (PROMs) at diagnosis, during, and post-treatment. Patients will be recruited over two years and followed for three years.

The research questions looked at include:

• How do North American rectal cancer patients who underwent rectal surgery experience changes in function (bowel, sexual and urinary), distress (emotional and financial) and QoL after surgery from baseline through early and late timepoints following treatment
• How do patient-, disease-, treatment-, functional- and distress-related factors predict QoL at baseline and at early and late timepoints post-treatment?
• The primary endpoint is QoL as measured by questionnaires given to patients at early (12-18 months) and late (2-3 years) time points. The study involves a multidisciplinary team who will provide expertise in research methodology, nursing, oncology and surgery.

The main advances expected from this study are:

• Collection of baseline data for important rectal cancer PROMs for clinical and research use
• Figure out how functional outcomes and QoL post-treatment changes to help counsel patients peri-operatively and throughout survivorship
• To provide the basis for future tailored programs to support rectal cancer survivors. Rectal cancer patients who can have curative intent treatment are eligible, people with metastatic disease or those planned to have abdominoperineal resection (APR) or pelvic exenteration surgery are not eligible.

Changes in Reproductive and Sexual Health in People With Early Onset Colorectal Cancer (EOCRC)

NCT04812912

This is a type of very important clinical trial that often goes unnoticed: an observational clinical trial.

While interventional trials are specifically designed to evaluate the direct impacts of treatment or preventive measures on disease, observational clinical trials aim to get more information about populations, diseases, beliefs or behaviors, without any intervention.

This observational study ongoing at the Memorial Sloan Kettering Cancer Center (NY) includes women ages 18 to 40 diagnosed with colorectal cancer, and men ages 18 to 50 diagnosed with colorectal cancer, who are going to begin chemotherapy and/or radiation therapy for their cancer. That is, people with early onset colorectal cancer who are about to start treatment.

The researchers will observe and track changes in hormone levels and in sexual and reproductive health in the study participants. This information will help them learn more about how cancer treatments affect reproductive and sexual health, including the ability to have children (fertility).

By participating in an observational clinical trial, which in this case is as simple as a single blood draw and filling out a questionnaire, some patients choose to play an active role in the research that leads to better treatments.

Increasing numbers of survivors face long-term side effects of treatment, including sexual side effects. Most of these are quite manageable if patients are aware of what to expect, and how to treat or manage side effects.

Lack of awareness of sexual side effects can lead to isolation, where people are unaware of how widespread the issues are or that they can be managed.

Since sexual health and intimacy are not easy topics to discuss, patients and caregivers may suffer in silence. Because intimacy and sex are important and fulfilling aspects of the life – for those in a relationship, for those who are single, too.

Sexual quality of life and body image are compromised during or after having colon or rectal cancer, and tend to remain impaired if unaddressed.

Once a month, Maia Walker and Manju George spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with Fight CRC and join COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

You can also follow Maia (@sassycell) and Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov for more information on trials.