DESCRIPTION
Jane Ludemann went through an arduous journey with ovarian cancer that had to be treated with a hormone inhibitor in lieu of chemotherapy. With this devastating news came the realization she would not be able to bear children.
Jane was in her early thirties, had just gotten married and her career as an optometrist in her native New Zealand was taking off. Although she had been in good health, Jane began to notice changes. Her bowel habits were different, she had to urinate often, she tired easily and experienced a loss is appetite.
She sought medical attention, and doctors told her she had a free-moving, six-centimeter cancerous tumor that at times wrapped itself around her ovary. One doctor said it could be diverticulitis, a gastrointestinal disease, or a cyst, but that at her age, she should be okay. However, the pain that accompanied the tumor intensified and a surgical procedure was performed to remove the tumor. They said they didn’t think it was cancerous and that the growth was fibroid, a benign growth on the uterus.
Meanwhile, subsequent blood tests revealed that the mass wasn’t just a benign fibroid, but it appeared to be something more serious. The mass was sent to pathologists in Australia. Then Jane was sent to a gynecologist, who told her she had ovarian cancer. This would require a second procedure to remove the ovary that had been enveloped by the mass.
Jane Ludemann was also told it was a rare type of ovarian cancer called Low-Grade Serous Carcinoma, which makes up about five percent of ovarian cancers, and that most of the time it is not survivable. Doctors said chemotherapy was not an option because it doesn’t cure this diagnosis.
Since 2017, Jane has been on a treatment that is hormone inhibitor, which removes all the estrogen from her body.
When the second surgery was performed, they thought the cancer had not spread from her ovary, and if that had been the case, her chances of survival would have been close to 90 percent. But it had spread, chemotherapy was no longer an option.
The hormone inhibitor has some nasty side effects. Jane temporarily lost her vision, but got it back; lingering side effects are joint pain and fatigue. She also has short-term memory loss, so her phone’s calendar and alerts help in a big way.
These days, Jane Ludemann can still go hiking and rock climbing, but she cannot do everything she could before her diagnosis. She comes up with coping strategies to do as much as she can, knowing that some things just aren’t as easy as they used to be.
Jane was dismayed to learn there are very few support options for someone with ovarian cancer, especially her rare type of the disease. So, she founded an organization that raises money for research, so that researchers can find better treatments for survival.
Originally named Cure Our Ovarian Cancer, the organization now is known as Ovarian Cancer Foundation NZ.
Additional Resources:
Ovarian Cancer Foundation NZ www.ovariancancerfoundation.org.nz
TRANSCRIPT
Bruce Morton: Greetings, and welcome to the Cancer Interviews podcast. I’m your host, Bruce Morton, and on this segment, we are going to hear from a woman who survived ovarian cancer, one of many forms of ovarian cancer. She is Jane Ludemann from Dunedin, New Zealand. Her story is one we want to hear. We hope you will find it to be educational and inspirational, so now let’s get started, and Jane, welcome to Cancer Interviews.
Jane Ludemann: Thank you for having me.
BM: We always like to start our interviews from the same place. We like to personalize you a little bit, get to know you a little bit, exclusive of your cancer journey. So, if you would, give us a thumbnail sketch of where you are from, what you like to do with your leisure time, what you do for work, that sort of thing.
JL: I grew up in the countryside on a farm in North Otago, which is in the bottom third of New Zealand. We farmed sheep and dairy and I went to a very small school of 40 for my primary and elementary school to a slightly larger school of 500 for high school. When I finished high school, I studied first of all in Dunedin, where I now live, with mathematics, chemistry and history. Then I went up to Auckland, which is the largest city in New Zealand and trained as an optometrist, up until 2019.
BM: I did not grow up on a farm, but I heard about those who have, especially when they are school age, that you have a very full day of farm duties and school. Is that what it was like for you?
JL: I was pretty lucky in that respect. I used to on the holidays, milk cows and help out. It was good incentive for university study, and farm labor is really hard work, but there are some really nice things about working on the farm, too. It’s quite a good way to grow up, I would think.
BM: Would you say that helped to shape your work ethic in any way?
JL: I think my parents were always very hard-working, and yes, that probably helped me.
BM: Next up, talk about your life before diagnosis. Describe what your health was like. Describe what your life was like.
JL: I had a really good life. When I trained as an optometrist, I worked in both a hospital setting and private practice around New Zealand, but I also spent a year working in Canada, in the small town of Digby, Nova Scotia. I loved optometry. It’s a really good career. I think people think of optometry, they think of glasses and that is certainly a large part of what we do, but the course itself is five years long, and there is a large health element to it. It’s quite nice, because a lot of what we see is routine, and a lot of the time we get to intervene early to stop people from having significant problems, so you see diabetics and you see people with cancer and other eye diseases that you can treat and manage. So, most people go in, you see the optometrist and you say whether or not someone needs glasses and that’s the only interaction you have, but there is a small segment of the people we see who experience a much larger impact in their life through their visit. In terms of when I wasn’t working, I really enjoyed the outdoors. In New Zealand, we call it tramping, but in the US, you would say hiking, a lot of overnight hikes, and I rock climb, I really enjoy rock climbing and skiing and being outdoors. In 2015, I moved back to New Zealand from Canada and I worked in Wellington, which is our capital city, as an optometrist. It was there that I met the man who is now my husband. He’s amazing and we go to know each other. He enjoys the outdoors as well. We weren’t in Wellington very long. I got offered this job in Dunedin and asked if he would move down there with me, and he said yes. I enjoy the outdoors, I am quite social, I used to host dinner parties of up to 15 people and cook for them.
BM: It sounds like life was good, and yet at some point, you have had an inkling, maybe more than an inkling that something wasn’t right. What happened and how did it manifest itself?
JL: For about two years, maybe a bit longer, I just started to have very subtle symptoms to begin with. I noticed a change in my bowel habits. I went to talk to my doctor, and he told me everything was fine, don’t worry about it. Then I started to have problems, I guess ovarian symptoms can be quite subtle to begin with, and not very alarming. I found I was needing to pee more. I would finish my work in the morning, and the first thing I would do, would be to go to the bathroom. I would justify it by saying it was warm in the office and I was drinking a lot, or you try to come up with some explanations about it, the doctor wasn’t concerned, so I just sort of went on with life. Then I began to get more tired, but I thought I was a person with a very busy life. I would be up at 6:00 in the morning and go off to a spin class and work a full day. I was studying for my master’s part time, I had a social life and I spent two weeks volunteering overseas in Samoa, so I thought it was just of my going hard, working really hard. My friends would joke me with me because if I ever went to a movie, I would fall asleep in the movie theater. I guess it was a funny sort of tiredness in that I could push through it, but it was noticeable, so those symptoms were around for about a year, then in addition I started to notice that I wasn’t able to eat as much, and I would feel full after dinner, and I also would start to snack more because I would get hungry between meals. But I thought my not eating much at mealtime was because I was exercising a lot. Again, I saw a doctor and they weren’t concerned, but I began to have these intermittent stomach pains when I felt like something wasn’t quite right. I would complete what I was doing, I would feel the pain, then after about half an hour, the pain would go away. I later learned I had a free-moving tumor, and it was twisting around my ovary, then it would shift back. But the bowel changes got worse, the need to pee got worse, needing to get up in the middle of the night at least once. It progressively got worse, but I was still doing almost everything I had done in my life. I wasn’t exercising quite as much, then I got fat because of the lack of exercise. I went back to the doctor and by this stage was getting more concerned. That’s when I summoned up the courage to ask, “Could I have cancer?” The doctor said, no, that I am too young, and that my symptoms don’t sound cancerous. He did say it could be a cyst and that it might be diverticulitis, but that I am okay. But I had this sneaking feeling something was wrong, so I purchased a cancer screening kit one can get at the pharmacy in New Zealand. So, I went to a pharmacy and bought it. That test came back normal, and I thought maybe I was a hypochondriac. However, the symptoms kept getting worse and this was happening while I moving to Dunedin and starting my new job. We picked out a house, and I was about to start this amazing job that I loved. Everything in life was really good. Then I got the pain, and this time it didn’t go away. It just got worse and worse, and I ended up on the bathroom floor, not able to scream in pain. My husband found me, put me in the car, I called the hospital. We then had to drive two hours to get to the nearest hospital and I had emergency surgery. They weren’t sure whether to send me home, but they gave me a scan and I had a 6cm mass on my ovary. They said they were going to check out the entire ovary. I woke up from surgery and was told what they thought was good news, that they had removed “this mess” that was causing me problems and they didn’t think it was cancer. They also said they were able to save my ovary, which was great news. It was fibroid; something they said they saw all the time, so they sent me on my way, but said there would be a long recovery. They said to come back in two weeks, but it was more like a month. Meanwhile, behind the scenes, they had examined what had been removed and realized it wasn’t just a benign fibroid, but it was a lot more serious. That’s when they sent it to Australia and had some Australian pathologists look at it as well and confirm the diagnosis. By that time, I had done some reading on some blood tests that they had gotten me to do and had read some about ovarian cancer and was getting a bit concerned. They then called me into a gynecologist who was expert in gynecological cancers, and that was when they told me I had ovarian cancer.
BM: You had mentioned the physical pain that came with this horrible news, and obviously the following hits you in a very negative way, but how difficult was this news mentally and emotionally?
JL: Very difficult. I think with any cancer diagnosis, it’s a really hard thing to receive because it is a big and scary thing to be told, and for me, the difficult thing was learning that this sort of cancer is not survivable as it is a rare type of cancer called low-grade serous carcinoma that makes up about five percent of ovarian cancers. Most of the time it doesn’t respond well to treatment, but it is slow growing. I remember sitting in a doctor’s office and he told not to worry because he has other patients who have ovarian cancer, but at the time it was little consolation because I was 32, and I had hoped to live another 40 or 50 years. It was devastating, really, really devastating to get that news.
BM: In terms of the treatment process, despite this terrible news, did the treatment go as well as it possibly could?
JL: I had a type of cancer that is considered resistant to chemotherapy, and there isn’t a lot of data for the doctors in terms of treatment of my cancer, but I guess I know that chemotherapy often doesn’t cure it, so instead, since 2017, I have been on a treatment that’s a hormone inhibitor. What this drug does, it removes all the estrogen from my body. I should mention that I had a second surgery once they realized it was cancer, they went in and removed the ovary, and at that stage they thought the cancer hadn’t spread and if it hadn’t spread, my chances would have been really good. Stage One of my type of cancer there is about a 90 percent survival rate, but unfortunately the cancer had spread. So, they put me on this drug that is normally used for breast cancer, they give it to women post-menopause. The side effects aren’t great, but it is thought to be more effective for my cancer, so I have been on that since 2017. It is not an easy treatment I think in the sense that it has lots of side effects. To give one example, my bone density, so the strength of my bones dropped ten percent in nine months, so I had to have an infusion for that which gave me heart palpitations. I also lost my vision, but thankfully that has been resolved with time, but may have to have another infusion soon, which I am not looking forward to. There is also joint pain, fatigue and other issues, but if I think back to my quality of life before cancer, there is a huge difference, but I look at what I can do now and think of it in isolation, I think my quality of life is pretty good. I am lucky that I can still rock climb and go hiking and do those things I really enjoy. I guess I have come to realize this is the best my quality of life will be, so I have to make the most of what I can do, because it is not always going to be as good as this. So, I am trying to make the most of it and live in the present as much as I can.
BM: You mentioned some of the things you still can do. What are some of the things you cannot do?
JL: There are certain things, like I cannot get pregnant and have children, and that’s very hard when you are in your thirties. I think the cancer drug, it has side effects and I think I have adjusted my life so I can manage those side effects and am really in awe of a woman I have heard about who was able to work full time while battling ovarian cancer. But you will get to a point in which you cannot do everything in life, so you prioritize things and you come up with coping strategies. My short-term memory isn’t very good anymore and so I find I need to use my phone calendar and its alerts so I don’t forget stuff, and I think there are a lot of things I can still do, but I need certain coping strategies because some things aren’t as easy as they used to be.
BM: Jane, if somebody is diagnosed with breast cancer, there are numerous support avenues awaiting them. I was diagnosed with prostate cancer, same thing for me, but what about people who are diagnosed with ovarian cancer or specifically, low-grade serous carcinoma. What kind of support avenues exist for people in your situation?
JL: There are some very general cancer support charities, and some countries have very good charities for ovarian cancer support as well. But there is not as much support as there would be for breast cancer, which can be a touchy subject for women with ovarian cancer because while we are very grateful for the support, with all the resources and reach-out for women with breast cancer, there is a bit of a contrast in terms of availability of services for women with ovarian cancer. We look over the fence and wish we had that level, but yes, there are some ovarian cancer charities that do a nice job and are doing the best they can with quite limited resources, and suddenly there are lots of online support groups. If you go on Facebook and search ovarian cancer you can come up with patient support groups in which women help other women.
BM: Different people react different ways, they are affected in different ways by their respective cancer journeys. In your case, you have made a decision to stand up for those who are or may be experiencing an ovarian cancer journey. If you would, tell us about what you are doing, Jane.
JL: When I was diagnosed, one of the first things I did was look for research information about my cancer, and I discovered there wasn’t a great deal of research out there. We went to Texas and visited MD Anderson and saw a doctor who is quite experienced in my sort of cancer. So as a family that is what we did, and when I got back, I made a donation to this doctor’s research program. Then I asked friends and family is they wanted to make a donation as well. Then I found out that here in New Zealand I couldn’t find an organization in which a donation from me or my friends would go toward research for my type of cancer. This is a good time to point out that while my cancer is a type of ovarian cancer, there are about thirty types of ovarian cancer. There are some things that we all have in common. Unfortunately, being unable to get a diagnosis is one of them, so, too, is the regression. My experience with low-grade serous carcinoma has similarities to other women with ovarian cancer, but there are also a lot of differences with it, too. So, I wanted my friend and family to donate for my specific type of ovarian cancer. There wasn’t anywhere in the world where I could direct them to do that, so I decided to make such a place. I got in touch with the researchers around the world and worked with them, and create an organization called Cure Our Ovarian Cancer and got other women to come on board. We raise money for research so that these researchers can find better treatments for our survival.
BM: If somebody watching or listening now wanted to learn more about your organization, what is its web address and what other information can you give somebody who is interested in following through?
JL: So, the web address is cureourovariancancer.org. If anyone has low-grade serous carcinoma, it’s a great place to go to find resources and support groups specific to your cancer. I would also encourage people to educate themselves as much as possible about their specific form of ovarian cancer. You will find you are so much stronger than you really could have imagined. You might think that things will break you, but actually, you manage. Certainly, if anybody is struggling, psychologists have been a plus as well because the mental difficulties are really difficult as well, and a good psychologist can be worth his weight in gold.
BM: Jane, we always start our interviews in the same way, and we like to end them in a similar fashion by asking this question: If you had a private audience with someone who has just been diagnosed with ovarian cancer or think they might be so diagnosed, and if there was one overarching message you would want to share, what would that be?
JL: To reach out to a support group and find the best information you can about this cancer. The most important thing is that you are not alone. There are tens of thousands of women with this cancer all around the world and similarly all sorts of women in the support groups who are all reaching out and helping each other. It’s hard, but there are lots of people out there who know what you are going through and understand that and would be really happy to speak to you.
BM: All right, Jane, thanks so much. We have been hearing from Jane Ludemann of Dunedin, New Zealand, and that’s going to wrap up this segment of Cancer Interviews. We hope that what you heard can aid the cancer journey for yourself or for a loved one. Thanks again, Jane.
JL: Thanks for having me.
BM: And until next time, we’ll see you on down the road.
SHOW NOTES
Jane Ludemann, Ovarian Cancer Survivor – Dunedin, New Zealand
Jane Ludemann is a survivor of a rare form of ovarian cancer, Low-Grade Serous Carcinoma. Her diagnosis came at a high price, and she is no longer able to do many of the things she could do in her pre-diagnosis life.
Jane was in her early thirties, had just gotten married and her career as an optometrist in her native New Zealand was taking off. Although she had been in good health, Jane began to notice changes. Her bowel habits changed, she had to urinate often, tired easily and experienced a loss in appetite.
Doctors told her she had a free-moving, six-centimeter cancerous tumor that at times wrapped itself around her ovary, one doctor saying it could be a cyst or diverticulitis, but that at her age, Jane should be okay. But the pain that accompanied this tumor intensified and a surgical procedure was performed to remove the tumor. Meanwhile, subsequent blood tests revealed that Jane had ovarian cancer, which would require a second procedure to remove the ovary that had been enveloped by the mass. With the devastating news came the realization she would not be able to bear children.
Jane was informed her cancer was resistant to chemotherapy and that treatment would include her being placed on a hormone inhibitor. Post-treatment, Jane suffers from memory loss, vision loss, fatigue and joint pain. This has not stopped Jane from doing what she to help others diagnosed with ovarian cancer, as she established Cure Our Ovarian Cancer, with branches in New Zealand, Australia, the United States and Canada.
Time Stamps:
07:00 Altered bowel habits tipped Jane off that something was wrong.
10:36 Doctors found a 6cm mass on her ovary.
17:26 Jane’s reaction to her diagnosis.
19:55 She put on a hormone inhibitor.
23:28 What she cannot do, post-treatment.
25:22 Jane says for her type of cancer, there aren’t many support options.
27:50 What she is doing to help others.
KEYWORDS (tags):
ovarian cancer
diverticulitis
cancer interviews
fibroid
hormone inhibitor
low-grade serous carcinoma
jane ludemann
chemotherapy

Commentaires