We need to talk about the ‘pink bits’

Jessica Dodds is using her experience with uterine cancer to raise awareness of gynaecological cancers. Sarah Webb speaks with her about breaking the taboo on women’s health and the ‘pink bits’.

Gynaecological cancer is one of the less known and less talked about cancers affecting women in Australia today. There are seven types of gynaecological cancer – ovarian, uterine (the most common being endometrial), cervical, vulvar, vaginal and two rare pregnancy cancers. Collectively, these cancers are the third most commonly diagnosed in Australian women.

With a staggering 6,073 women estimated to be diagnosed in 2017 with a gynaecological cancer, this raises some concerns for patients and families affected by the horrible disease. This is especially because, out of those 6,073 women, 1,769 are expected to lose the fight.

With the exception of the ‘Pap Test’ for cervical cancer, there is no test for gynaecological cancer. The symptoms are unclear, and sometimes non-existent. So why don’t we hear more about it?

Despite these alarming statistics, gynaecological cancer remains a taboo subject among the general public. We know that stigma and a lack of knowledge are key barriers for women to talk openly about gynaecological cancer and seek medical help. However, there are those who aim to break this cycle and raise support and awareness for those affected.

Tighes Hill social worker and Bachelor of Social Work alumna, Jessica Dodds, said she was diagnosed with stage one uterine (endometrial) cancer and polycystic ovarian syndrome last year, at the young age of 29.

Jessica Dodds at Mater Hospital, ‘Last Day of Treatment!’

There are two main types of uterine cancer, according to Cancer Council Australia: endometrial cancer in the lining of the uterus (endometrium), which account for about 75 percent of all cases, and uterine sarcomas that develops in the muscle tissue (myometrium), which is a rarer form of uterine cancer.

It’s the most diagnosed gynaecological cancer in Australia.

Jessica said symptoms can include “any type of bleeding or spotting after menopause, or an abnormal discharge”. She has spoken to several younger women who have this type of cancer and they mostly presented with cramping and heavy bleeding.

Treatment often involves brachytherapy radiation, chemotherapy, or  hysterectomy. However, women who are only in their 20s and 30s diagnosed with the disease, usually wish to keep their options open so they can still have children. As a 29-year old, Jessica still wishes to still have kids with her husband, so is currently undergoing brachytherapy radiation.

“It can take away your ability to have children, and that’s devastating for some,” she said. “I don’t want that experience to be the same for other young women.”

With it being a more common diagnosis in women over 50, Jessica said it was her young age that was the reason it took more than seven months to receive a diagnosis from when she first started showing symptoms. She said she was told several times before being diagnosed that “cancer only happens if you are over 40”. And it was during those seven months that, unfortunately, Jessica’s cancer progressed to stage two.

“I wasn’t believed when I kept saying my symptoms were persisting.”

This is why it’s so important for women of any age to know what the symptoms of cancer can be, so if they notice something out of the ordinary, they can discuss with their GP about it.

“My young age is also the reason I want to raise awareness now. I want to let women know that you don’t have to be 40, 50 or 60 to get this type of cancer.”

Initially, Jessica knew little about her condition and seeked support from those affected by the same disease in the Newcastle community. While she discovered support groups for breast, bowel and prostate cancer, unfortunately, she could find no face-to-face support for uterine cancer.

“I wanted to change that,” Jessica said.

Uterine (endometrial) cancer is one of the most commonly diagnosed gynaecological cancers affecting Australian women, with the incidence rate expected to generally increase with age. However, according to Jessica’s sister and Bachelor of Nursing student, Amy Lee, due to this lack of awareness in the community, it seems education on gynaecological cancer is not being emphasised enough.

“I hadn’t even heard of uterine cancer before,” she said. “You hear of other gynaecological cancers such as cervical cancer, which is very important, but hardly uterine cancer. We feel there’s not enough out there about it.”

Likewise, Jessica said gynaecological cancers often get “overshadowed” and aren’t talked about enough.

“You hear more about cervical or ovarian cancer, yet statistics show uterine cancer is more commonly diagnosed. How is it possible that we don’t know enough about this?”

Then you’ve got the added dilemma of embarrassment that often hinders women wanting to talk about what’s going on ‘down there’. Some women might have this ‘feeling’ that something is happening with their bodies and “this is why [I] wanted to inspire others to be proactive about their health,” Jessica said.

So in this spirit, Jessica is raising funds for the Cancer Council NSW (Hunter Branch) to fund a support group for women with gynaecological cancer in the Newcastle Region. Although she is not undergoing any chemotherapy treatment right now, Jessica said she will be shaving her head, with her sister Amy, on Saturday, April 8 to support those women who don’t have a choice.

Sisters Amy Lee and Jessica Dodds at Jessica’s graduation.

“I felt if I was going to raise awareness, I need to be bold and make a statement. What better way to do this than shave my hair? I wanted to do this, in support of others who have no choice in the matter, and be proud to do so.”

Her sister, Amy, also said they “just want to raise awareness for gynaecological health in general; it should be more talked about”.

And Jessica’s efforts have certainly not gone unnoticed by the community. Not only has she exceeded her target of $1500, but has received support from women all over the region – some of whom are affected by the disease and have been afraid to talk about it, and others who wish to spread the awareness.

“It’s just an amazing feeling to know I have inspired other women to speak about their experience,” she said.

“Even if all I did was inform women about the risks or signs, and that saves one life, then I am happy with that outcome.”

It is vital that we raise awareness of the signs and symptoms of all types of gynaecological cancers. It’s time to change the mentality of these being a taboo subject, and get women talking about their bodies. Only then can we start reducing the number of women who lose the fight to the horrible disease.

“The best thing women can do is educate themselves and look after their health,” Jessica said. “Be proactive about any symptoms that are worrying, and do your best to live a healthy lifestyle.”

 If you’d like to support Jessica’s brave shave on Saturday, April 8 for uterine cancer, or make a donation to Cancer Council NSW, head here.

If you or someone you know are experiencing symptoms of a gynaecological-related issue, speak with your gynaecologist, General Practitioner, or visit one the medical and health services on campus for consultation.

 

Feature image via Unsplash, by Worthy of Elegance. All other images courtesy of Amy Lee.