Newsletter 1 – The Oncofertility Forum Special Interest Group

It is with great avidity that SASREG launched The Oncofertility Forum Special Interest Group and hosted the first live webinar on Fertility Treatment Options Currently Available to Oncology Patients, which was sponsored by Ferring.

Oncofertility is the bridge that connects the fields of oncology and fertility, allowing cancer patients, male and female alike, the opportunity to preserve their fertility for the future. 

Thanks to the efforts of SASREG and interested Oncologists, the field of Oncofertility has gained traction in South Africa in recent years. However, in comparison to some other globally established Oncofertility protocols and communication, it can still be seen as the new kid on the block in South Africa and Africa. Hence the start of The Oncofertility Forum Special Interest Group: to increase the education, understanding and communication of what fertility preservation options are available in South Africa and the processes thereof. 

This is where the invaluable Oncologists, Oncology Navigators and Nurses come into play. As Dr Chris Venter, Reproductive Medicine Specialist (SASREG), said in his talk, Oncology Navigators are the glue between the Oncologists and Reproductive Medicine Specialists, and with cancer patients spending the majority of their time with Oncology Nurses, they too form a crucial part of this communication and awareness chain. It is with this notion that awareness of Oncofertility can grow in the communities of Navigators and Nurses as they are the ones walking side by side with cancer patients.

 Oncofertility in South Africa: Progress Report

Dr Chris Venter (SASREG) has been the motivation and driver of The Oncofertility Forum Special Interest Group and has been successful in putting Oncofertility in the spotlight. He explained that even though Oncofertility has been around for many years, it was in 2017 that a decision was made to create a network and have a national collaborative attempt to promote Oncofertility in South Africa. It was thanks to guidance and set standards from The Oncofertility Consortium, in Chicago, USA, that got the ball rolling. 

Having a presence and hosting sub-sessions at the 2018 SASMO and 2019 Endoscopy in Africa and Beyond Conferences proved to be good platforms to launch the field of Oncofertility. Dr Venter emphasised that Oncologists and Oncology Surgeons are partners in this quest to promote Oncofertility. 

Thanks to a published article on How to develop an Oncofertility programme in developing countries, written by Dr Venter and Prof Georgia Demetriou, in JCO Global Oncology, Dr Venter believes a footprint was created before COVID took centre stage and halted any further conferences planned.

To date six SASEG accredited fertility units have joined the Oncofertility network wanting to sub-specialise in Oncofertility. It was explained that Oncofertility procedure data only started to be captured in 2018; less than 1% of all cancer patients received fertility preservation in 2018. The good news though is that from 2021, all SASREG accredited units need to submit all Oncofertility procedure data to the African Network and Registry for Assisted Reproductive Technology (ANARA).

In the unit Dr Venter specialises at, it was reported that between 2014 and 2021, 60% of all cancer patients that were referred for fertility preservation, went ahead with the preservation procedure. He added that the main reason for the 40% not opting for it came down to cost. This led to the exciting news that SASREG is currently in negotiations with a major healthcare funder to fund Oncofertility procedures on certain medical plans. SASREG hopes this will have a ripple effect with other funders.

Dr Venter closed by saying that SASREG remains committed to help patients complete their families.

Oncofertility Care at Northwestern Medicine

Kristin described how The Oncology Consortium at Northwestern University was established and what her role entails as a Patient Navigator for fertility preservation. Simply put she explained that Navigators are the middle-women for everything, getting the patient from A to B to C as seamlessly as possible, with minimal delay in their treatment. Having all medical services and facilities within one campus has been essential in assisting her patients to accessibility to care.

The various ways Oncologists referred patients to Kristin was expanded on: the hard-stop questionnaire, the Best Practice Advice and telephonic referrals.

On average, 40 new patients are seen in a month at Northwestern, with about 150 egg/embro cryo cycles and about 125 sperm banking done per year.

Various web-based navigator training, such as Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) and a 12-module course at American Society for Reproductive Medicine were promoted. However, it was noted that there isn’t yet a standard approach to Oncofertility Patient Navigation, but communication is in place to change this. Kristin also advocated for any interested parties to join the Oncofertility Navigation Subcommittee that includes Navigators from the States, Australia and Japan. 

Kristin spoke about the most common cancers she sees in men and women and how cancer therapy affects both and discussed the various fertility preservation options available. Current male fertility preservation options include sperm banking; testicular sperm extraction and testicular tissue banking. Current female fertility preservation options include embryo/oocyte cryopreservation; oophoropexy; ovarian shielding; hormone suppression and ovarian tissue cryopreservation. 

The importance of fertility preservation in childhood cancer patients was highlighted with case studies. Kristin ended by stating that she guides her patients through the whole fertility journey, making most of their appointments, being present at consultations and procedures and is their go-to-person.

Oncofertility: challenges and opportunities

Dr Van Eeden began her talk with current stats: over 20 000 patients under the age of 49 are diagnosed with cancer annually. She added that she sees this in her practice with patients being younger and younger. However, with new broader treatments emerging, survival rates in these younger patients have increased substantially, but one of the consequences of these treatments is infertility. Added to that, there is a need for balance of complex healthcare, quality of life issues as well as psychological issues and this is where the multi-disciplinary interaction comes into play. Geneticists and Genetic Counsellors were highlighted as genetic mutations may play a role in these younger patients and any future pregnancies. 

Dr Van Eeden explained that even though the Oncologist is focused on getting the patient the best treatment, the Oncologist needs to be up front with patients, explaining the side effects and risks of their treatment, including the risk of infertility as well as fertility preservation options. Dr Van Eeden urged Oncologists to discuss fertility preservation with any patient in the reproductive age and to let the patient decide on the way forward, regardless of what treatment will be given or what stage of cancer they have.

Unfortunately, Dr Van Eeden explained that Oncologists in South Africa are quite isolated from other services as opposed to Kristin’s comment that all medical services are within one campus. Thus, making it that much harder to see to all the needs of the patient.

Religion, cultural beliefs and costs were mentioned as some of the reasons for declining the option of fertility preservation treatment in South Africa. Another factor that is to be considered is that many women nowadays are having children at a later age. In these women who are diagnosed with cancer, surrogacy may be an option. 

Dr Van Eeden implores that referring patients who show interest in fertility preservation to a Reproductive Medicine Specialist as early as possible is imperative as well as reassuring the patient if they are anxious about the potential risk of delaying treatment. There are very few cancers that treatment needs to be started the very next day. She added that it’s of utmost importance in having a Reproductive Medicine team who is willing to see the patient as soon as possible. Dr Van Eeden works closely with Dr Venter and adds he is always willing to assist.  

She explained how various treatments impact fertility in male and female cancer patients. It was mentioned that the impact of newer therapies, such as targeted therapies, is still unknown. Timing of when it is safe to fall pregnant, especially in hormone driven breast cancers, was discussed as well as medical funders not covering the cost for GNRH agonist drugs due to conflicting evidence. 

Ending on a positive note, Dr Van Eeden listed solutions to promote Oncofertility: creating awareness, be activists for patients, actively motivate funders and create opportunities for research and local data.

If you would like the full recording of the webinar, please email Gottie at [email protected] or click here to download a PDF of this newsletter.

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