Personal Stories

Ali Du Fresne - Endometrial Cancer

Ali Du Fresne - Endometrial Cancer

When I mentioned it to the doctor, she said” It could be nothing or it could be something- we’ll check it out”. So began a roller coaster ride- first a pelvic ultrasound, then a hysteroscopy- endometrial exploration, then a scan. After the biopsy, when I was slowly coming out of the fog of the anaesthetic, the surgeon very kindly came up to me and told me that “she had seen worse! “ It’s astounding how these sort of expressions stick in your mind! The CT scan that followed showed that I did indeed have endometrial carcinoma. It wasn’t until the night before my operation for the full hysterectomy that the surgeon (another one thankfully) told me that I had a grade 3 C carcinoma. In other words, a very fast growing bloody great malignant lump on my uterus. In his subsequent letter to the doctor and other professionals involved, he said that Ali seemed surprised when I told her this!!! Having never been to hospital apart from having babies, my anxiety levels sky rocketed. Thankfully the surgeon is a wonderful man with a good combination of skills and empathy. He was very good to me the whole way through, and personally rang my husband straight after the operation. He ended up removing lymph nodes where the cancer had spread. It was also all through the wash and at the top of my cervix. (my cervical smear test results had come in the mail just a few weeks before- all healthy!) I was asked if I would like to participate in a cancer treatment trial- PORTEC 3. It seemed that I would be well looked after by the absolute crème de la crème of health professionals if I took part. It would also mean flying to Christchurch for all checks which didn’t seem to be too much of a problem. If I got into the control group, I would have 5 weeks pelvic radiation followed by bracchy therapy (Internal radiation). Anyway, with the PORTEC trial, the experimental group involved having chemo as well as all this. In hindsight, thankfully, the computer in Holland that made the selection put me into the control group. Having been a person who has lived by natural remedies for most of my life, I was all set with lists of supplements to take when I was having the treatment. My doctor prescribes alternative therapies as well as traditional medical practice. One of the important lessons I have learned is that there are many “experts” on cancer treatment- some of them contradictory. I have learned to use my own research, professionals I trust, and gut feeling to guide me to what I need to become well and to keep surviving. It was a difficult time, despite all the good moments- those times when we made the most of everything- my wonderful husband and daughter looking after us. I am so thankful to the wonderful people who provided me with stacks of books to read over that period. There would always be a book in my bag with me. Sometimes the radiation machine would have a hissy fit, or they would be behind in their appointments, so my books were a saviour. As too, were the ukuleles that my husband and I bought down there. Roger found good music at the local library, and in my good energy times we would sing and play. We still play together. They are such wonderful forgiving instruments! Most stories I have heard or read about people’s experience with cancer include the ones of finding out who your true friends are. Indeed, that has been such an interesting experience, but I guess that any productive and healthy garden needs a good weeding every now and then. I feel very much closer to my real friends now, who still want to know how I’m getting on. Over a period of 6 months I had experienced a diagnosis of cancer, had a radical hysterectomy, 5 weeks of pelvic radiation, 20 hours of internal radiation, been alongside my sister in her journey through illness and death, and had been celebrant for 5 funerals of people close to me. Enough is enough! At that point I became somewhat obsessed with buying native trees to plant on our land. I had no energy to plant them, but they symbolized new life for me. It’s amazing how many people tell you that you must keep positive in this cancer business. I’m not sure if positive means positively hurling some objectionable books about cancer across the room- or being positively furious with some people in my life and indeed, letting them know, or being positively terrified that I was going to be the star role at the next funeral . I made a conscious decision that being authentic was more important to me than trying to be positive- that felt real. I have had my first annual checkup. I didn’t really believe them when they said I was doing fine, and that I was looking well. I struggle with the fear of death still, but I am adjusting my diet and am now learning- very slowly, how to meditate, with a great group of people – a group set up by the cancer society with a fantastic teacher. I have decided not to work over winter, and I spend my time doing things for myself, making yummy food, gardening, doing music lessons, practicing meditation, walking, spending time with family and my dear friends. I shout myself massages sometimes, read a lot, and on better days, (which are coming more and more frequently) truly appreciate the richness in my life. I have even managed to plant all my native trees with the help of my wonderful grandchildren and my husband. I guess that can be seen as both positive and authentic!

(October 2010)

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Amy Ryan - Ovarian Cancer

Amy Ryan - Ovarian Cancer

Who would have thought that so much could happen in 21 months!

Finally after three years of trying to have a baby, one round of IVF with a positive test then a miscarriage, my husband and I did it. We were going to have a baby all on our own. This was to be the start of something new for us. My pregnancy was just wonderful with no hiccups along the way. Then on the 29th April 2010 our beautiful son Jonty was born. Our dreams had finally come true. Little did we know that Jonty was to be a life saver in so many ways?

Due to Jonty being stuck I had to have an emergency c-section. I was told by the doctor that I had a 6cm cyst on my right ovary. Since I have had cysts before and endometriosis I thought nothing of it and was told to have a scan in 6 weeks’ time. The next six weeks went fast as all my energy was on Jonty so didn’t even give the scan a second thought until I was trying to change my health insurance and needed my results.

This is when the roller coaster began. I was told that the cyst had grown to 12cm in 6 weeks and that it would need to be removed. So off to my gynaecologist I went and was informed that I had grown something different and that was the reason why I still looked 6 months pregnant!

When Jonty was 14 weeks old I went to have my cyst removed and what was to be a simple operation ended up with my right ovary and fallopian tube removed as well as a 25cm cyst full of 1.5 litres of fluid. At this stage they were thinking that it was just a benign tumour as nothing had shown in my blood. However a day after I got home we got the call to come in, it was cancer!

The tests began to determine what type of cancer it was. This was to see if what they had removed was a secondary form or the primary source of cancer. Luck was on my side and it was primary cancer they had removed. They couldn’t be certain that it hadn’t spread as the tumour had ruptured as they removed it. I was sent to meet a wonderful gynaecological oncologist who told me it was ovarian cancer and my treatment would involve a radical hysterectomy, removal of my appendix, lymph nodes and chemo.

In an instant my life had changed! At 32 I had another major operation that would mean I couldn’t look after my baby without help, I could no longer have children, five and half months of chemo resulting in the loss of all my hair, eye lashes, major weight gain and no self-esteem! During this time I had major ups and downs but with the support of my husband, Jonty, family, friends and people I met along the way I made it! I had my last chemo on the 21st April 2011 and Jonty had his 1st birthday on the 29th April 2011.

It is now 21 months on and I am cancer free. I have a wonderful family and a wee man that makes me smile every day. If it wasn’t for Jonty they would not have found it so early and I may not have been here today. Cancer has changed my life and in a funny way it has made me a stronger and a better person. Now I look forward to giving back and helping others. My first attempt is to get fit and run the Triple Peaks in March with friends to raise money and awareness for ovarian cancer, so keep your chin up as you will have bad days but you will get there in the end. I DID!!!

(March 2012)

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Leanne Coleman

Leanne Coleman

In 1990 at the age of 25 I read an article in a magazine about Endometriosis and self-diagnosed myself. My gynaecologist initially disregarded the idea until an ultrasound confirmed that I did indeed have Endometriosis. For the next five years I endured countless laparoscopies and a laparotomy to remove the offending cysts and adhesions, but sadly they kept coming back.

In 1995 I headed to the UK to live and my Endometriosis went with me. I continued to be plagued with back pain, very heavy periods, passing of large blood clots, and irregular breakthrough bleeding. I gave up going to Dr’s for treatment as nothing seemed to work and I’d had it instilled in me from the moment I started menstruating that heavy periods were just part of a ‘woman’s lot’.

Then one day I was admitted to the Royal London Hospital suffering from anaemia and requiring four units of blood. On further investigation they determined that I had a large fibroid hanging from the top of my uterus and protruding through my cervix. This unwelcome alien was the cause of my by then constant bleeding, which I had attributed to my Endometriosis. After treatment to reduce the size of the fibroid, it was removed some months later and sent to the lab for testing. I returned for my post op check-up and the gynaecologist informed me that due to an abnormal pathology report I would need a hysteroscopy.

At the next visit post hysteroscopy my gynaecologist told me I had Endometrial Stromal Sarcoma (ESS) and would need an immediate hysterectomy. I was 33 and my partner Andy (now husband) and I were trying for a family at the time. Sometimes our minds work in strange ways as all I could think about was that we wouldn’t be able to have our own children. I seemed to miss the other point entirely – I had cancer. I debated with the gynaecologist as to whether the hysterectomy could be delayed until I’d had a baby. Neither my gynaecologist nor the oncologist that I was later referred to would be deterred from their decision, so in September ’98 I had a TAH (Total Abdominal Hysterectomy). My ovaries were not removed as the cancer was confined to my uterus. I recovered quickly, continued to be monitored by the oncology team and life went back to normal. I had no radiation treatment, no hormone treatment and no chemotherapy, just regular ultrasound checks with the hospital. I was told nothing about the type of cancer that I had, and I guess due to the limited information that they had about ESS at the time, I wasn’t told that it could re-occur. So, I got on with life thinking that the cancer was a freak occurrence and that Andy and I were going to grow old and grey together, albeit without the children we had both dreamed of.

Well, it’s now 2012, 14 years on in my journey. I had seven years of being cancer free, and then in 2003 an ultrasound revealed two growths in my lower pelvis. As they were not changing shape or size and didn’t act like cancer it was determined by my gynaecologist and the radiologist that it was Endometriosis. I wasn’t being seen by an oncologist, although I now know I should have been. I refused to have the growths removed as they always came back and a biopsy was never suggested – oh how I wish I had pushed for one, but at that time I was still incredibly ‘cancer naïve’ even though I had had cancer. It wasn’t until mid-2005 that I started to feel tired, constantly bloated and generally unwell and it was then that a scan revealed that the growths might not be Endometriosis after all. After further tests I was finally diagnosed with a recurrence of ESS. This time though the tumours were unresectable, therefore my cancer was incurable.

It was a huge shock for Andy and I but we were optimistic that hormone treatment would keep the tumours under control, and it did for a while. After 18 months and a very stressful time at work my tumours became very aggressive and I was quickly signed up for my first chemo. That was when I realised I carried a ticking time bomb everywhere I went, and so the fight really started.

Over the last seven years I have completed five chemotherapy regimens to fight the tumours and three different hormone treatments to block my body’s production of estrogen. I’ve lost my hair four times and once lost my eyebrows and eyelashes as well. Then there are all the very private issues that I have had to deal with. Not only can I not have children, my first chemotherapy put me into chemically induced menopause at the age of 42. Since then a total lack of estrogen has meant that I suffer from very dry skin, a total lack of libido and atrophy of the genital area. The treatments for the last two issues involve estrogen which of course I have to avoid. It doesn’t stop there; because I have large tumours at the bottom of my pelvis I also suffer from very painful intercourse and painful orgasms. This affects me far greater than having incurable cancer, but having an incredibly loving and understanding husband gets me through.

The upside to all of this (there’s always an upside to everything in life) is that I am no longer ‘cancer naïve’. I learnt quickly all that I could about my cancer and the treatment options and have taken a very active part in my treatment and management of my symptoms, which I am sure has helped me deal with my overall prognosis. Although I am no longer on treatment, I am still doing well. My main problem is that I suffer from Ascites (fluid build-up in the abdomen – I constantly look pregnant) and occasionally Pleural Effusion (fluid build-up in the lining of the lung). I am having abdominal drains every 7 days and a lung drain when needed. Andy and I have had a number of instances where we thought ‘it was the beginning of the end’ for me, but now we have no idea how much time is left ticking away on the time bomb, so we just get on with enjoying life together and worrying about the things we can change, and ignoring those we can’t.

What my journey has taught me the most is that any changes to your menstrual cycle, unexplained bloating and unexplained abdominal or pelvic pain, should be investigated immediately by your Doctor, and the investigation should be continued until a plausible cause is found. Don’t just assume like I did that it’s just a ‘woman’s lot’.

(July 2012)

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Lynne Stronach - Cervical Cancer

When I was in my early twenties, I had Pap smears every six months. The Doctors did not tell me why until one day my new doctor called me in as I had an abnormal smear. He told me that my cells were on the road to becoming cancerous unless they went back to normal and that he would keep a good watch on me. "Don't go home thinking you are going to have cancer" he said. "Cells often go back to normal and besides, if it's not watched I could have cancer in my forties”.
Many years passed and I gave birth to a boy in 2000. During 2006 I felt lethargic, tired all the time and sex was becoming quite painful. Many times there was bleeding afterwards. This was definitely not menstrual. I will never forget New Year's Eve 2006, I bled every day from then on. I had just turned 35 years old. I had had a Pap smear done in November of 2006 - everything was fine. I was told to go to the hospital by my partner. There, hospital staff performed all kinds of tests and nothing showed up. Just a guess of me possibly having endometriosis.
After speaking with my GP, she sent me to have a vaginal ultrasound. Nothing at all showed and I was told to 'come back in six months for another ultrasound.' At this point I wasn't about to wait so I had my GP send me to see an OBGYN at the beginning of March 2007. There I had a colposcopy done and a biopsy. I had to wait about a week before I found out the results, but I had a feeling the results wouldn’t bring good news.
When I went in to hear the results I was given the worst news of my life. I had cervical cancer.
I was sent to a hospital in the city to see a team of oncologists. Another test was performed. I was given two options: to either have a hysterectomy or to have a radical trechalectomy. I chose to have my cervix removed as I wanted to avoid menopause at that age and still possibly have children - with stitches holding a baby there if I were ever to get pregnant. I had my surgery on Easter Monday April 10th, 2007. The surgery was a horrible process. My sentinel lymph nodes were removed as well. This was day surgery, and I woke with severe pain from the gas in my shoulders and bad anxiety. I didn't get discharged from the hospital till the evening so I was actually there for 12 hours. I was angry for not being able to stay. I had to keep a catheter in for two weeks with a nurse checking on me at home. I was grateful for having my mother look after me and my seven year old son. It did affect my family as they were emotional now and again. The day after the operation I screamed holly hell as I couldn't get out of bed. It felt like someone was stabbing me in the ribs and I had numbness in my right upper thigh. An ambulance was called and I ended up in our local hospital. Nothing much could be done accept X-ray and IV. Through the healing process I walked with a cane due to the nerve damage in my right thigh that was caused when my sentinel lymph nodes were removed. They called it Meralgia paraesthetica. It has reduced now but I have this for the rest of my life.
I thought I was now on the road to recovery but boy was I wrong. The doctors had found microscopic tumours in two of my lymph nodes. I was now given an intensive plan for chemotherapy and radiation. I had the best volunteers from the Canadian Cancer Society to drive me to the hospital Monday thru Friday. Such wonderful people to take time out of their day to take me, wait on me and take me back home. My first week into therapy was the most horrible experience - feeling lifeless, vomiting, diarrhoea, but worst of all I became allergic to Semetil. After radiation I could barely talk and was in tears. My driver said to go back in to talk to someone. What I had, which was not common, was lock jaw from the anti-nausea medication. They sent me straight to emergency. I felt distorted and I almost bit my tongue off. After countless drugs I was discharged. My oncologist had never seen this happen to anyone in all of her years of practice.
It took a long time for me to recover physically and mentally. I felt destroyed, and old. Sex was a big issue that became a real problem. I felt ruined and thought I would never be the same. I had to see a gynaecologist for advice and help regarding sexual issues. I was angry as I felt like I couldn't please my partner, myself and thought I would not be able to enjoy sex again. With lots of anger and depression I was prescribed anti-depressants.
One thing I can say that I am not proud of is not playing it safe with sex when I was a teenager. We weren't educated about the link between certain HPV viruses and cervical cancer. This link was not widely known back in the eighties. Teens today need to be educated and made aware of HPV virus and its potential to cause cervical cancer. People also need to hear the stories of survivors and how it has affected them. You don't know how much it will impact your life until you have it. Let’s teach our teens to play it smart and think safe sex.

Whilst I can't have any more children I feel blessed to have my wonderful son Liam who is now 14. This experience has changed my life in many ways and has made me a strong and determined individual. I am now 43 years of age and cancer free. I can enjoy sex again. I can be around pregnant women where previously I couldn’t as I had dreamed of having a large family. I love my life - working on my BA in primary teaching and writing children's picture books. I love children and if I can't have anymore, I want to educate them. We feel very fortunate to be living now in NZ and plan to be here indefinitely.

(July 2015)

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Alison Carline - 2016 NZGCF Award Recipient

Alison Carline - 2016 NZGCF Award Recipient

Alison registered as a RN in 1981, completed Midwifery in 1983.  Came to NZ as a Midwife for a years working holiday in 1986.  Alison started work in a Gynae Clinic in 2003 as a RN and became a Clinical Nurse Specialist in 2010.

Alison was unable to join us at Getting Glam for Gynae 2016 Charity Fundraiser:- below is her acceptance speech.

Kia Ora from Northland.

Firstly I would like to thank Dr Ai Ling Tan for nominating me for this award.  I must apologise for not being able to attend tonight. In accepting it, I would like to acknowledge the others in our team, clinicians, booking clerks and nurses that work extremely hard, enabling women to attend appointments in Whangarei and Auckland. Working alongside these women, helping then to navigate the complex raft of tests, investigations and appointments is challenging but also rewarding.On a more serious note, as you already know the cancer statistics for Northlanders are horrible, particularly for Maori women.  We see Gynae cancers diagnosed too late with subsequent poor results. Raising the profile of Gynae cancers is important.  They are still very much a 'silent' cancer because women are too shy and embarrassed to seek help early.  I was pleased to see that Erica and the NZ Gynaecological Cancer Foundation came to Whangarei this month, spreading the word about what signs and symptoms women need to look out for. 

Finally, I hope you have a memorable and glamorous gala evening.


Thank you, Alison Carlin

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Jan Barker - 2016 NZGCF Award Recipient

Jan Barker - 2016 NZGCF Award Recipient

Dedicated, hard working, supportive, always at the end of the phone and nothing is too much trouble.  Jan is the backbone of the Foundation and has worked tirelessly within the organisation since 2009 and is an integral part of the NZGCF team.  In addition to her significant volunteer work for the Foundation, Jan and her husband, Nick, run their own successful Auckland plumbing business.  Jan is a very capable accounts person, working in the family owned business for more than 25 years and has a vested interest in helping the New Zealand Gynaecological Cancer Foundation because of her experience with a woman's cancer and having lost family members and close friends to these women's cancers.  

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