Ovarian Cancer Grad- Jane
“I’d also like to help ovarian cancer become a disease that is ruled out, rather than ruled in. So many women spend months to years fighting to get a diagnosis. It shouldn’t be so difficult.”
Name: Jane Ludemann
Age at Enrollment: 32
Major: Stage 2B Low-grade serous ovarian cancer
What were the primary symptoms you experienced prior to diagnosis?
My first symptom was a change in my bowel motions (looser, more frequent, variable). But the other main symptoms I developed over time included needing to urinate more often and urgently, tiredness, feeling full quickly, feeling bloated (but I didn’t have abdominal distention) and variable intermittent lower back/rectal/pelvic/abdominal deep discomfort which got gradually more severe.
What symptom(s) lead you to go to the doctor?
Most of them. I saw my doctor from the first symptom over two years before my diagnosis and kept going back again and again. There were a few things I didn’t recognize were significant at the time. For example I had an occasional intense twitchy thigh muscle because the tumour was irritating a nerve (it resolved after surgery). But the majority I repeatedly complained about. I felt like a massive hypochondriac to be honest.
What treatments have you endured (i.e. surgery, chemo, radiation, etc)?
I had two surgeries. The first was an emergency surgery because the tumour had caused my ovary to twist. Unfortunately the general gynaecologist didn’t think it was cancer and ruptured the tumour and left the cancerous ovary behind. I then had surgery to remove the ovary and stage my cancer. At that stage the gynaecological oncologist thought it hadn’t spread and wanted to preserve my fertility. But although there wasn’t any visible growth, the pathology came back positive elsewhere. I take an injection every 12 weeks called zoladex to stop my remaining ovary from functioning, and take letrozole daily.
I haven’t had chemotherapy. It’s a controversial issue in low-grade. One of my doctors wanted me to, the other two didn’t and they won the argument. I didn’t really get a choice. I don’t know if it was the right decision or not. There is a prospective study that started this year, looking specifically at that question. So that knowledge will be useful for women diagnosed in the future.
How did you respond when you heard the words “You have cancer”?
It is devastating. I kind of knew it was coming because of all the delays on my results, and the tests they made me do. But even so to have it confirmed. Unbelievable. I remember sobbing my eyes out in my husband’s arms in the park before we drove home.
What has been your hardest moment(s) since your diagnosis? How have you moved forward through them? Facing your own mortality at 32 years old and the uncertainty around having children. I have seen several psychologists and they have been helpful in helping processing this. But it never really goes away.
What has been your biggest accomplishment since your diagnosis?
I tramped the Kepler track (a 3 day mountain hike in New Zealand) with friends, and last year went rock climbing for a week in Australia. Physically cancer and the surgeries leave you shattered so they were big achievements.
But I think forming Cure Our Ovarian Cancer is one too. It’s been difficult juggling this diagnosis, and work, a life and then this HUGE project on top of it. But before I was diagnosed there was no way to donate directly to low-grade serous ovarian cancer research. And now there is. The organization has been operating for a year and a half. It’s already raised over a hundred thousand dollars directly, and through partner charities. I “retired” from optometry in June this year to concentrate on it full time. I loved my job but some things are more important. I have big dreams for Cure Our Ovarian Cancer. I’m not willing to give up on my hope of seeing 50 yet.
What do you believe are the unmet needs of young adult patients within the cancer community?
So many. But isolation is one. At our age, I’m the first experience most people have had of this kind of hardship. People don’t necessarily have the tools to know how to react and deal with that information. In that background, online support groups can be hugely helpful.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? What advice would you give to the caregivers?
Be kind to yourself. You have the most tremendous coping skills, it does get easier. Get psychological support- it’s too much to carry on your own. Don’t be afraid to ask questions, record your appointments and fight for what you think is best for you. For the caregivers – it’s hard but try to be patient and put the cancer sufferer’s needs before your own. Ask what they need you to do and give examples. Respect that sometimes they need comfort but sometimes they need space. Try to listen to what they say, not just what you hear.
How did your family and friends respond?
I am so very fortunate to have such incredible family and friends. I have felt so very loved throughout all of this. My husband in particular, it’s been so tough for both of us, but he truly has been amazing.
When you feel overwhelmed or anxious, what do you do for relief?
Distraction – I never used to watch TV before I was diagnosed and now I watch a lot! But also walking and meditation.
Describe a situation where you “got back up”:
Goodness. I don’t think I can describe “a situation”. It’s like nearly every single day!
Do you have any new daily/weekly routines since your diagnosis? If so, what are they? How have they improved your quality of life?
Physiotherapy and pilates. Surgeries really take a toll. On top of that last year I broke my leg. Physical strength is a really important part of my well-being so they have both been incredibly helpful.
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
Nothing. I’d never heard of it. I was worried about bowel cancer with my symptoms, but I did a screening test and that was negative. My doctor said my symptoms weren’t serious, that I was too young to have cancer, and among other things if it was an ovarian cyst they were always harmless. If I’d known ovarian cancer killed more women than melanoma every year I would have pushed to be tested. But at the time I didn’t know what tests I needed.
What do you now want people to be aware of?
That women with low-grade serous ovarian cancer are dying because researchers are under resourced. A donation through Cure Our Ovarian Cancer can go a huge way to giving women hope of a better future.
But also that women of any age can get ovarian cancer. Although there isn’t a screening test If you have symptoms you should get a CA-125 blood test and an internal ultrasound to rule it out. One study found 4 out of 5 women with ovarian cancer are initially misdiagnosed so if you have symptoms don’t take no for an answer until you’ve been tested.
Have you experienced any shifts in your outlook on life due to your diagnosis? If so, what are they?
I put a lot more emphasis on quality of life and self care – I’m still learning! I used to be very ambitious with my career, but that passion has been transferred into my ovarian cancer advocacy work instead.
Have you created any meaning out of this experience?
I’m Christian but I don’t believe there is any larger purpose behind my diagnosis. But I do believe that being in this position means I have an obligation to use my skills and knowledge to try and make life better for other women.
How did/do you find joy during this experience?
I have met some incredible women with this disease, and I really value those relationships.
What has your cancer experience taught you?
That life can be so absolutely unfair but also that the human mind and body can be incredibly resilient.
What do you want your legacy to be?
For low-grade serous ovarian cancer to be as survivable as breast cancer. In this day and age the general body of cancer knowledge is huge. The scientific tools to fix this already exist, but the researchers need funding to apply those skills to our cancer. Cure Our Ovarian Cancer is trying to create a sustainable research fund to give researchers the resources they need to solve it.
But I’d also like to help ovarian cancer become a disease that is ruled out, rather than ruled in. So many women spend months to years fighting to get a diagnosis. It shouldn’t be so difficult.
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of cancer patients, what would it read?
”Just because cancer is the worst of you, it doesn’t mean you can’t use it to bring out the best in you.”
