Queensland

Save
Print
License article

'Nobody talks about the pink bits': Cancer survivor aims to remove stigma

A battle with vaginal cancer has inspired a Brisbane woman to design her own underwear and become an advocate for women to talk about their "pink bits".

Mia was in her early 50s when she was diagnosed with stage one vaginal cancer in 2015 after pathology results from an abnormal pap smear tested positive for the rare gynaecological cancer.

Abnormal pap smears were not unusual for the mother of two who had dealt with the discovery of abnormal cells in her cervix that lead to a hysterectomy in 2000.

She said if it wasn't for her maintaining regular tests, she would never have known she had vaginal cancer, which is diagnosed in 70 women across Australia each year, according to the Cancer Council.

She struggled to tell family and friends about what she was going through.

"I was stunned, my husband and I were on our way out and I just said to him 'can you pull over, I have something I want to tell you'," she said.

Advertisement

"The pair of us just sat in silence but we got ourselves sorted out, we still went out to dinner because I don't think either of us wanted to confront it.

"I was pretty fragile I guess, I let people know when I was ready that I had vaginal cancer, I didn't talk about it until I knew what the process was going to be."

Mia underwent keyhole surgery to remove the abnormal areas and, thanks to an early diagnosis, did not require chemotherapy or radiation therapy, however "if it does come back that is the pathway I have to go down," she said.

As a result of the surgery, which included the removal of her lymph nodes, Mia was diagnosed with a condition called lymphedema, a failure of the lymphatic system that results in excessive fluid build-up in the lower half of her body.

Determined to take control of her situation, Mia sought out ways to improve and manage the incurable condition that left her feeling uncomfortable and swollen.

"I was measured for (compression) stockings when I was going through treatment ... however the gear I had been suggested to wear was a mismatch of different things for over my pelvis and abdomen," she said.

She turned to staff at Medical Accessories at Milton who helped her custom-design a pair of compression stockings and pants that made her feel good.

"I actually showed them what I was wearing every day and they came up with ideas to put something together and I was able to say what I was comfortable with, what I thought would work and how we could implement better compression," she said.

Mia changed the colour of her compression stockings and added lace to her pants to make herself feel more feminine.

"I felt I was doing something and something was working, it was making a huge difference to my life, to what I could wear while I was still wearing clothes that covered up, I just felt better," she said.

"With the rose-coloured compression stockings I could actually wear dresses and that was so important to me because I could wear pretty things.

"Bright colours make me smile and make the people around me smile, it makes me feel good and I was just putting things in place to do that - I can tell you now - the black dog was nipping at my heels."

As Mia was battling with lymphedema, her lifelong friend Chris was diagnosed with advanced endometrial cancer, and the two women relied on laughter and lipstick to get through the tough times.

"I was wearing bright clothes ... before Chris, but once she got diagnosed, I pushed it even harder because life became much shorter for her," she said.

"We had this little thing called FOC, F--- off Cancer, that was our mantra.

"We laughed about where we were, we cried, we both had swollen sore bits, what else do you but laugh."

Chris died in 2016, however Mia has continued using humour to get women talking about gynecological cancer.

"It comes down to taking the pink bits out of the box, and getting women to start talking, if I can make people laugh about it and still get the message across, it is a great effort," she said.

"If there are any lumps or bumps that aren't right, go and talk to your doctor - gynaecological cancer is in the box, nobody talks about the pink bits in the box."

Queensland Centre for Gynaecological Cancer Director of research Professor Andreas Obermair holds admiration for Mia for having the courage to tell people she had vaginal cancer.

"Normally we see that women are quite reserved talking about gynaecological health issues and so she breaks with the ranks there and I think she does women who are affected by gynaecological cancer a massive service," he said.

"I am not exactly sure why this is the case but what we observe is that there seems to be a stigma around gynaecological cancer."

The gynaecological oncologist said these specific cancers - including vulvar, cervical, vaginal, ovarian - are often not talked about as frequently as other cancers.

"When I speak to patients with ovarian cancer, they say how could this be, I have already had a  pap smear," he said.

"It would be safe to conclude that there is a lack of information about what a pap smear does, doesn't do, how, where ovarian cancer develops etc."

Mia is participating in a beach volleyball tournament hosted by Cherish Women's Cancer Foundation on Friday March 17 to raise funds for research into gynaecological cancer. Visit cherish.org.au to find out more.

Mia is participating in a beach volleyball tournament called The Battle next Friday 17 March to raise funds for gynaecological cancer research. The event will be hosted by Cherish Women's Cancer Foundation.

Stay informed. Like Brisbane Times on Facebook