EMW19 (Julia)

Name: Julia
Age at interview: 36
Diagnosis: Medically-induced Premature Ovarian Insufficiency (POI) (following treatment for Hodgkin’s Lymphoma)
Age at diagnosis: 31

Background: Julia works part-time in communications, lives in a regional area with her husband, and is pregnant with their first child.[1] She is from an Australian background.

About Julia: At age 29, Julia was diagnosed with Hodgkin’s Lymphoma. Treatment including chemotherapy, stem cell transplant and radiation resulted in menopause. She suffered night sweats, low libido, vaginal dryness and weight gain, trying herbal medicines and, later, Hormone Replacement Therapy (HRT). Julia became pregnant through ovarian tissue preservation and transplant[2]; a process which also restored her ovarian function, reversing menopause. Support from her partner, close friends and family has been invaluable.

More about Julia: At age 29, Julia was diagnosed with Stage 2b Hodgkin’s Lymphoma. She was initially treated with chemotherapy, but after the cancer returned, Julia had a stem cell (bone marrow) transplant and radiation therapy.

Although the treatment was successful, within a few months Julia began experiencing hot flushes, night sweats, vaginal dryness, weight gain, low libido and fatigue. She described feeling ‘lacklustre’ and unsure if her symptoms were related to cancer treatment or menopause, and said it was a ‘pretty tough’ time.

Julia initially tried herbal medicines to manage her symptoms, but after attending a menopause clinic she was diagnosed with medically-induced Premature Ovarian Insufficiency (POI) and prescribed Hormone Replacement Therapy (HRT). Finding a dose and form of HRT that suited her involved ‘trial and error,’ causing ‘a lot of frustration.’ Julia tried several different HRT medications until she ‘settled on one in particular.’ While HRT helped to alleviate some of her symptoms, she felt as though there was still a ‘spark’ missing.

Julia remembered feeling frustrated by the ‘ridiculous’ lack of information about premature menopause and said she could only find information for ‘women in their 60s.’ Living in a regional area presented further challenges in accessing medical support, treatment and medication. However, she ‘finally’ found an ‘absolutely fantastic’ locally-based GP who was ‘understanding’ and supportive, and an endocrinologist who discovered that her cancer treatment had also caused hypothyroidism, for which he prescribed thyroxin.

Julia said her ‘first questions’ after her cancer diagnosis were about the impact of treatment on her fertility, as she had ‘always wanted’ to have a family. After two unsuccessful attempts at storing embryos via IVF between chemotherapy rounds (for future fertility hopes), Julia agreed to have part of her ovary removed and cryopreserved; an unproven method at the time. About four years after completing cancer treatment, Julia stopped taking HRT and had an ovarian tissue graft. The successful uptake of the ovarian tissue in Julia’s body turned her hormones ‘back on again,’ and, after IVF, resulted in a successful pregnancy. Having her ‘own hormones’ again made Julia feel as though her ‘pilot light’ was back on – she described having more energy, and feeling more positive and much more like her old self before cancer.

Julia reflected that her experience greatly impacted on her sense of identity. She emphasised the importance of better integrating fertility preservation information and services within cancer clinics and encouraged other young women to ‘feel empowered’ to ask medical professionals questions.

[1] A postscript from Julia: I was overwhelmed to deliver a healthy baby boy in November of 2017. I have full ‘normal’ hormone function and am breastfeeding, feeling more energetic than ever before and loving life with my husband and our little son.’

[2] Fertility preservation using eggs or embryos is often considered for women with cancer; ovarian tissue preservation is less common due to concerns about potential cancer recurrence with some cancers.