Monday, February 22, 2010

HELP FUND A CURE

So if you have read my story below you have a good idea on how hard the last 4 years have been on me and my closest family and friends. I finished my intense chemotherapy treatment on 1st Septemeber 2009, I had a PET-CT just before christmas which showed something. Since then i have undergone a number of biopsies to only confirm the worst outcome- persistent cancer which has started playing up as soon as the chemo stopped. Now this is where people need to understand why ovarian cancer is such a deadly disease. currently the treatment available is unsatisfactory and not as researched or funded as other cancers. So basically if you reoccur especially within 6 months "the doctors" assume that your disease is going to keep doing this i.e- you will need to remain on chemo for the rest of your "short" life. As you can understand being just 26 this is clearly not an option and not something i am going to settle for. My nutritionist who is an amazing doctor told me there is always "hope!" I honestly believe that.. .there is always hope. I get that oncologists have to be negative its their job but thats where i say right back to them its my job to remain hopeful and positive because at the end of the day. . .they are just like me. . human! they do not have god like abilities and they do not know anything for certain. If history predicts anything I clearly know my body better than any doctor or test can offer! So here we are.. . I have a friend being treated at a clinic in America for ovarian cancer who offers patients like us the chance for a curative approach rather than pallitative. It uses drugs approved by the FDA however they have not been approved specifically for ovarian cancer. Avastin at the moment is an exciting drug however is only approved for bowel cancer patients yet the bowel is often the first organ that ovarian cancer attacks. This drug costs $2,500 every 3 weeks and often women have to stay on it for years. With the addition of other drugs ths clinic costs around $15,000 a MONTH! So with the help of others, my friends are rallying together to fundraise money towards my cure and treatment! While also raising awareness about ovarian cancer- please know a pap smear does NOT detect ovarian cancer! it only detects cervical cancer.

MY LIVING NIGHTMARE

My story is one that involves frustration, heartbreak and sheer determination and should be told to help raise awareness of the symptoms of ovarian cancer in order to inform women, society and General practitioners. As far back as 2004, I can remember beginning to feel unwell and began experiencing a number of different symptoms. As time went on these became more persistent and became more painful. I am not like a lot of women who may only experience one or two symptoms sometimes making their diagnosis more difficult, mine should have been an open and closed case due to the number of symptoms I experienced and the amount of time I spent at the doctors trying to be proactive and an advocate for my health. Alarm bells should have started ringing when I approached doctors with this list of symptoms: constant fatigue, unexplained weight gain, irregular and painful periods some lasting for months at a time. Abdominal bloating to the extent that I would look 9 months pregnant come afternoon, constipation and diarrhea, loss of appetite and feeling full after small amounts of food. I also experienced a frequent urgency to urinate.

You can begin to feel my frustration as I can understand how a case may be harder to diagnose with one or two symptoms but with a list that long it doesn’t take much to tie them all together if you, as a general practitioner are aware of the symptoms of ovarian cancer. One common mistake made is that because of my young age (20-22) general practitioners and even other women I spoke to dismissed by claims of being in pain and feeling unwell. I received terrible treatment from more than 10 General practitioners often making jokes how I always took an advocate, often my mother along with me to appointments. I have been called pradantic, a hypochondriac and one GP even stated that “at least we know it’s nothing serious because you have had these symptoms for so long”. Sadly, that is not true with ovarian cancer and 75% of the cases are not diagnosed until the later stages of disease which greatly affects a woman’s prognosis and quality of life. Not only do women need to start listening to their bodies but GP’s need to start listening to their patients regardless of age. Society needs to be educated about ovarian cancer as women still believe that a pap smear detects ovarian cancer. It DOES NOT detect ovarian cancer it only detects cervical cancer. The youngest patients in Australia with ovarian cancer were just 7 years of age.

In 2006, after GP’s continually dismissed my case and failed to refer me onto a gyno I demanded a referral and began seeing a gyno in my local area. As ultrasounds had detected nothing which is often the case I demanded a laparoscopy which is often the only guaranteed way of checking what exactly is going on inside a woman. This test marked the turning point in my life from here on I would never be the same person again, physically, emotionally or mentally. I was diagnosed with stage IIIA borderline ovarian cancer. I still remember not feeling too concerned even though my mum cried when I rang her at work and told her that they had found a tumour on my right ovary. This was mainly because I had never heard of ovarian cancer and did not know how serious it was or what the treatment would entail. As borderline acts differently to invasive carcinomas its treatment does not involve chemotherapy but involves invasive surgery often through a laparoscopy or open wound surgery. In May 2006 weeks after my diagnosis I travelled to Brisbane where I underwent 3 surgeries in only 6 weeks. I had to have another laparoscopy by a gyno-oncologist which resulted in another surgery for a laporotomoy (removal of right ovary) and scraping of my peritoneum. Sadly, the test results showed another 5 spots of this borderline disease within my uterus and it was recommended I have another surgery this time it would require a 15cm vertical cut from my belly button down and a much longer recovery period.

I remember at this point I was still feeling quite optimistic and just kept thinking well at least it’s not invasive, I’m young and fit I will heal quickly. Over the next 2 years I remember the recovery took a lot longer than the gyno oncologist indicated and I still had not regained the muscle control back in my abdomen as the nerve endings had been damaged. I began noticing problems with my menstrual cycle again and saw my GP. Once again my claims were dismissed and I made an appointment with my gyno. Straight away my gyno made an appointment for another laparoscopy with my gyno-oncologist. In January 2008 I had another laparoscopy which unfortunately showed I had another reoccurrence of the borderline ovarian cancer which in over 90% of the cases does not normally occur. This is the first time I cried throughout this whole journey, by this point I had educated myself on ovarian cancer both borderline and invasive and knew the poor statistics I would face if it ever did turn invasive. I remember thinking it took me two whole years to develop my confidence again and return to the old Mel and now I would have to start all over again.

The next 12 months were very hard as I could not get definite answers from anyone, not even my two "specialists" (gyno-onoclogists) I was seeing. This is when I began to realise what a sad and lonely journey having this “type” of disease was. This is when my determination kicked in to try and make a difference. Out of curiosity I went into local doctor clinics in the area and not one in over 30 clinics had one single pamphlet on ovarian cancer. There were many on breast cancer but none on ovarian- I began thinking to myself- well how are we ever going to raise awareness if even the local doctor clinics and our government are not behind us? I contacted OVCA Australia and launched my own little campaign with the help from family and friends. We had over 50 shirts printed with the clear message of “help break the silence” and to have people identify with the colour teal- for ovarian cancer the way they do with pink for breast cancer. Together as a group we raised awareness within our local community and also sold merchandise to help raise funds. I promised myself this time next year in 2009 and I would launch an even bigger campaign and hopefully help see it launched across Australia- where you would see “teal” and awareness messages at every local doctors clinic, hospital, public toilets, supermarkets and generally out in the public.

Sadly in November of 2008 I began to feel unwell again with common symptoms of fatigue, unexplained weight gain, bloating and abdominal pain. I still remember getting a phone call while I was teaching and was informed that my ca125 count had increased. I was devastated. With borderline your ca125 does not necessarily increase- which makes this disease hard to diagnose if the patient is not aware of their symptoms. Mine had always been around 12 and anything under 35 is considered normal which shows it is definitely not a reliable test at all. Both my gyno-oncologists advised me it was just more of the borderline and not to worry despite my requests for another laparoscopy and PET-CT scan which both would show any invasive disease if present. Neither of them would back down and told me to just have another ca125 in another 6-8 weeks. By that time I had noticed a lump under my skin where my left ovary was so I went to my local GP straight away as my gyno oncologists were in Brisbane and Sydney. Without referring me onto my gyno-oncologists, completing an internal examination, ordering standard tests such as an ultrasound, CT or PET-CT I was told it was just an adhesion from past surgery and that borderline could not turn invasive. This did not go down too well with me as both my specialists had advised that there was a small chance that borderline can turn invasive so I went and saw one of gyno-oncologists again who failed to even examine the lump, do an internal exam or order any of the standard tests to check on the seriousness of my situation. As this also did not sit well with me I then travelled to see my other gyno-oncologist who also advised that it was just an adhesion, quickly ran his finger over it while I was standing but also failed to properly examine it laying down when it was at its largest, do an internal examination or recommend surgery or further tests.

By this stage you can imagine my stress levels, frustration and complete isolation from the real world. I remember thinking why can’t I just have a disease that is widely recognised by society, that has effective diagnostic tools, treatment plans, post-treatment plans, specialist nurses and specialist gyno-oncologists that were actually able to give me answers. I was put on an “experimental “ drug called tamoxifen- commonly used for breast cancer patients NOT ovarian. As I remained on this drug for the next 8 weeks, despite my concerns of feeling short of breath, dizziness, vomiting, fainting while exercising my gyno=oncologists put it all down to “normal” side effects of the tablet. In April 2009 I collapsed in excruciating pain and was rushed to my local hospital. After a number of testing (standard tests which I had requested earlier) were ordered and revealed what I had been fearing for 3 years now- 27 lesions or tumours throughout my entire body. They were not definite if these were cancerous or benign; however it did show that the lump I had been able to feel which continued to get bigger was a massive tumour on my ovary. This marked another turning point in my life, one that I can say will never return me to the fun loving optimistic person I was. I am now scared physically emotionally and mentally from my journey and mainly due to the fact that this never had to be the outcome- If only I was listened too and the symptoms for ovarian cancer were recognised and discussed openly within society and at our local doctors then this could have been prevented. I also feel that because I was younger than the average age of 46 to get the disease I was treated poorly by a number of health professionals.

In April 2009, I had to undergo another laparoscopy to see the exact extent of my disease and to take a biopsy to establish the stage and type of tumour. As this confirmed our worst nightmare that the disease had turned invasive one week later I had to undergo the biggest surgery I would ever have. I was ordered to have a pelvic clearance involving- a radical hysterectomy, scraping of peritoneum, laporotomy (removal of left ovary) and a reconstruction of my bowel. I was told at the last minute I would have to wake up in ICU and I remember feeling my heart absolutely shatter into a million pieces and balled my eyes out. I don’t know how, but I did manage to get through the surgery and the next two weeks in hospital. My next defining moment and test of courage was when I was to meet my oncologist and was told that I would not be going home until I had two rounds of chemotherapy. Once again my frustration could be seen when I was enquiring into treatments available for this “underfunded and undereducated disease” I could not understand how in 2009 we had gotten things so wrong!

The next 6 months for me were pure hell. People often ask what it was like to go through chemotherapy and I simple reply you cannot imagine the fight inside you that comes alive to want to live but the experience can be so damaging that towards the end of my 5th cycle I remember that even this fight had been overcome and I literally just sat down and cried and begged to die. The reason ovarian cancer is so nasty is for a number of reasons. Firstly, it is so aggressive, you really have only one chance of remission and cure as often if it reoccurs it has become resistant to the chemotherapy. Secondly, the location of the cancer and the dramatic surgery required to cure you- not only is it having your ovaries and uterus removed but often like mine- my bowel, bladder, utuers and kidneys were all affected by surgery. Thirdly, at present the “best” method for treatment involves both IV and IP treatment meaning rather than just having chemo through your veins I also had to have it directly into my abdomen, so yes its stronger and better for killing the cancer but it also greatly affects the quality of your life due to the damage it causes to your organs.


As we enter 2010 I would have to say ovarian cancer really needs to come to the forefront of the governments and Australia’s cancer funding and awareness campaigns. It is about time this disease received more funding for both awareness and research.

Ovarian cancer still does not have an effective diagnostic test, even the new ca125 test costs about $200 for patients who wish to be screened for the disease. Which in my eyes really defeats the purpose of finally having a diagnostic tool if the government is not going to subsidise it. More than 10 years ago ovarian cancer patients faced an 80% death rate, sadly today we still face this same death rate. Now let’s compare this to other types of cancer who over the last ten years have seen a dramatic increase in their survival rate from 20% to 80% due to successful fundraising and awareness campaigns. This is what I would like to see for ovarian cancer and other gynological cancers- an effective diagnostic tool which is free for women over 40 and recommended with a pap smear every two years, if younger women present with symptoms then she should also get this test free. Effective treatment plans where the chemotherapy has a far greater success rate and does not build up a resistance over time and effective and manageable post-treatment plans which does not involve anything invasive. There is no way I would agree to have any more surgery and we should not need to be cut open every 3 months just to “check” if the disease has come back or to confirm findings on a PET-CT scan. Most cancers to this date have non-invasive blood tests or scans that can be done and allows these patients to live a manageable life afterwards. However, I don’t see how I can go on, not living my life in constant fear when we still do not have any effective and reliable methods which can monitor my remission successfully without being invasive. Even a PET-CT which is the only tool they can use at present is not 100% accurate as it cannot distinguish between inflammation and cancer. So next they will look at your ca125 blood test if anything shows up in your scan which is definitely not accurate with women I have spoken to saying it remained under 35 yet they had invasive ovarian cancer and others having false positives due to inflammation or infection in another area of the body.


I am now trying to work out who I am and what kind of future I have ahead of me. I do remain optimistic and look forward to returning to my one true passion of teaching this year. I don’t want any other woman to go through what I have experienced. Sadly, building back up my confidence and getting over my anxiety has been a very, very slow process due to my fear of the reaction of the general public and people I care most about. I know that people are scared of the unknown and tend to treat cancer patients as if they are contagious, but trust me the fear they might feel is nothing compared to the fear within the person going through the journey. I have witnessed even some of my closest friends and family turn a blind eye to my situation and wipe me from their lives. At first I was saddened by this but not anymore because these people do not matter or make a big difference in someone’s life, it is all the other people, my support network of close family, friends, social workers and other cancer patients even strangers that have gotten me through this horrific ordeal. Also I have finally gotten to share my story after 4 years of approaching media outlets including local TV networks and papers only to be rejected as “ovarian cancer” was not seen to be as “important” as other social issues or cancers. I will not give up until I see a successful campaign launched for women with ovarian cancers so that they do not have to suffer in silence and to save thousands of lives.

I have put myself out there and shared this very personal and difficult journey with you in order to help raise awareness and funding towards ovarian cancer. Together we can make a difference and allow the colour “teal” to be recognised for ovarian cancer as commonly as pink is recognised for breast cancer.

Sunday, February 21, 2010

FIRST ENTRY

Hi,
First of all i want to thank Gemma Campbell for setting this up for me. I also want to thank the tremendous support i have had from my friends on facebook who have shown their support during this difficult time. I hope this blog not only leads to my cure but also raises awareness about ovarian cancer and that no other women has to go through the hell I did.
 
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