The MOC Project
Donation protected
Hello,
My name is Sarah Burns and on August 17th 2020 at the age of 25 I was given the devastating news that I had Ovarian Cancer. I was diagnosed with a rare subtype called Low Grade Mucinous Ovarian Cancer.
The goal of The MOC Project is to start a fund dedicated to the research of Mucinous Ovarian Cancer and to get the scientific community interested about this cancer. The project will be ongoing in the hope that with the necessary funds raised one of the current Ovarian Cancer UK charities will host the first research project into this rare subtype. I believe wholeheartedly that this is possible and I am extremely passionate about this cause. I refuse to wait around to see if my cancer returns and be given the same grim prognosis five years down the line. I am determined to make the change for women like me. Ovarian Cancer does not discriminate and can effect women of ALL ages. If something doesn't feel right to YOU then advocate for your own health and go to the doctors as early diagnosis is key to surviving this disease.
My story begins in December 2019 when I started to experience bleeding in between my periods and my cycle became shorter and I had started to lose weight. I initially put it down to stress but my gut was telling me to go to the doctors. The doctor ran a full set of bloods and arranged an ultrasound 'Just in case its cancer'. To be honest I didn't think that was even a remote possibility; I was young, fit and ate well. Now, months after my diagnosis I will be eternally grateful for that particular doctor for her swift action as I know for many women that is normally not the case leading to a late diagnosis.
In February, I attended my ultrasound and was found to have a 10 cm mass on my left ovary which was a complete shock but I was reassured that cysts on the ovaries are common in young women and due to the size I would probably need to have it surgically removed but it was nothing to worry about.
I was given an urgent referral to see a gynaecologist and had my first Ca-125 marker blood test. A marker I was told detects ovarian cancer; I now know that this won't elevate in some cases especially MOC.
After seeing the gynaecologist and receiving the news that my Ca-125 blood markers were completely normal being at 2; Above 35 indicates a problem. I left feeling completely reassured that it wasn't cancer but was sent for an MRI scan to have a better look at the 'cyst' . I was told that the MRI scan indicated that it was not cancer but a complex ovarian cyst that could potentially have borderline cells ( cells that are not cancerous but not completely normal ) which is also common in young women but they would surgically remove it and try and save some of my left ovary.
Due to the pandemic and the national lockdown being announced they would rescan me and check my bloods in three months time. With a new sense of security I continued on with my normal life but during these three months my symptoms became much more apparent; I began to experience bloating, tiredness and needing to go to the toilet more urgently.
Bloating is one of the main symptoms of Ovarian Cancer.
June 2020 after attending my scan and blood appointment my markers were still normal but the cyst had grown and was now at 12cm. I had my first Laparotomy surgery on July 31st and was told that everything had gone really well and the cyst looked normal and they had even managed to save some of my left ovary. All I needed to do was to wait for the pathology results to come back within two weeks to see if the cyst had borderline cells but thankfully the ordeal was over.
Laparotomy surgery round 1.
Two weeks and no results.. my instincts were telling me that something was wrong and I left it to the last minute to ring for an update. When I spoke to the doctors secretary he said that my results were not back yet but accidently let slip that a Macmillan nurse would be contacting me...
Instantly, I thought Macmillan means cancer and I broke down and rang a friend who was a nurse for some reassurance. She knew and I knew but she told me that it might not be but its best to prepare yourself for the worst. I received the call later that Friday evening and was told to come back into the hospital on Monday and to bring someone with me. For all my previous appointments and surgery I had to come in alone due to the pandemic. I asked if it was cancer and she told me that the full results weren't back yet but to try not to worry and enjoy my weekend as nothing has happened yet.
On Monday the 17th of August I came into the hospital with my partner and anxiously waited in the waiting area. I tried to hide the fact that I was the only person with someone with me and convince myself that of course it wasn't cancer. I was finally called through and given the devastating news by my surgeon. Not only was it cancer, but during the surgery the tumour had split. I was given an initial stage of 1c1. I would need re-staging surgery where they would remove my left ovary and fallopian tube, omentum, peritoneum and take various biopsies throughout my abdomen to see if the cancer has spread and potentially adjuvant chemotherapy.
I was in complete denial and brushed it off for a while refusing to accept the severity of my situation. The week before my staging surgery after attending a CT scan it hit me. I was petrified. I wasn't ready to die there was so much that I still had to do and google only made it worse. I knew if my cancer had spread outside of my pelvis I would be given a terminal diagnosis. I underwent my second Laparotomy surgery on the 28th of September 2020 and awaited the news. The wait was agonising and my mental health was suffering but thankfully I received the news that the cancer had not spread.
Laparotomy surgery round 2.
Having Ovarian Cancer has had a detrimental effect on my fertility but after two rounds of IVF I managed to freeze 24 eggs. I then attended The Christies to speak about chemotherapy and was faced with a very difficult decision. The chemotherapy had a very slim chance of working as MOC doesn't respond well to conventional treatment but because my tumour had split during surgery there could still be undetected microscopic cells present so it would act almost like an insurance policy. However, by having chemo that would completely eradicate my chances of having children naturally in the future and although my IVF was a success that does not mean that any of the eggs will work.
Awaiting my first jab. During my IVF treatment Matt had to inject me twice a day for 6 weeks.
Ultimately, myself and my oncologist decided that chemotherapy was not the right option for me right now. I have struggled with this decision ever since and am unsure if I have done the right thing . I live in constant fear of recurrence that is only elevated by three monthly bloods and six monthly scans and I am left with scars that remind me every day of my cancer journey. After a cancer diagnosis you will never be told you are 100% cured but simply have no evidence of disease ( NED ) and this is something that I have to try and learn to live with. Although my prognosis is good, where 9/10 times the surgery is curative I have met women who were the same stage as me whose cancer unfortunately returned and due to the rarity and limited treatment options are now facing a terminal diagnosis.
The scars I have been left with post surgery but very grateful for.
And this is where The Mucinous Ovarian Cancer project comes in...
MOC represents 1-3% of women diagnosed with Epithelial Ovarian Cancer and due to its rarity, there is no active research or clinical trials on offer in the Uk at this time . Currently, no ovarian cancer charity in the UK is looking into this cancer and all the current research and breakthrough drugs simply state non-mucinous which is devastating. A trial was attempted in 2013 but unfortunately, they struggled to accrue enough patients with Primary Mucinous Ovarian Cancer as this particular type can be mistaken for secondary cancers from other locations so it was not completed. Since then, it seems that it has simply just been forgotten about.
The prognosis if caught early is good, however if the cancer is to return which is a very real possibility or the cancer is found at a later stage the prognosis stands way short compared to the other subtypes. MOC acts as its own entity and does not respond to standard ovarian care treatment options such as Carbo/Taxol or any other type of chemotherapy or treatment on offer for Ovarian Cancer patients. For this reason it is so important that something changes as it is in great need of targeted treatments to help improve our prognosis.
We all have women that are important to us whether it be family or friends. We should do this for them.
For the first fundraising event me, my partner Matt and a good friend Rhys will be taking the 278 mile trip cycling from London to Paris on the 14th of June 2021. After two open abdominal surgeries this will be a mental and physical challenge but I am working hard to regain my fitness and strength and we can not wait to get started.
Matt, myself and Rhys at Kinder Scout training for our fundraising event.
Thank you for taking the time to read this, I hope that no matter how big or small you will join me in my mission to raise funds for research into this rare subtype of Ovarian Cancer. If you would like to get involved or take part in any fundraising events please do get in contact.
The MOC Project's first target has been set to £5000, which, once hit will increase to the next target, until a sufficient amount of money has been raised so any donations would be greatly appreciated.
Sarah x
To see what current fundraising is being undertaken by The MOC Project and our journey leading up the event:
Instagram: @The_MOC_Project instagram.com/the_moc_project
Facebook: @TheMucinousOvarianCancerProject https://www.facebook.com/TheMucinousOvarianCancerProject/
My name is Sarah Burns and on August 17th 2020 at the age of 25 I was given the devastating news that I had Ovarian Cancer. I was diagnosed with a rare subtype called Low Grade Mucinous Ovarian Cancer.
The goal of The MOC Project is to start a fund dedicated to the research of Mucinous Ovarian Cancer and to get the scientific community interested about this cancer. The project will be ongoing in the hope that with the necessary funds raised one of the current Ovarian Cancer UK charities will host the first research project into this rare subtype. I believe wholeheartedly that this is possible and I am extremely passionate about this cause. I refuse to wait around to see if my cancer returns and be given the same grim prognosis five years down the line. I am determined to make the change for women like me. Ovarian Cancer does not discriminate and can effect women of ALL ages. If something doesn't feel right to YOU then advocate for your own health and go to the doctors as early diagnosis is key to surviving this disease.
My story begins in December 2019 when I started to experience bleeding in between my periods and my cycle became shorter and I had started to lose weight. I initially put it down to stress but my gut was telling me to go to the doctors. The doctor ran a full set of bloods and arranged an ultrasound 'Just in case its cancer'. To be honest I didn't think that was even a remote possibility; I was young, fit and ate well. Now, months after my diagnosis I will be eternally grateful for that particular doctor for her swift action as I know for many women that is normally not the case leading to a late diagnosis.
In February, I attended my ultrasound and was found to have a 10 cm mass on my left ovary which was a complete shock but I was reassured that cysts on the ovaries are common in young women and due to the size I would probably need to have it surgically removed but it was nothing to worry about.
I was given an urgent referral to see a gynaecologist and had my first Ca-125 marker blood test. A marker I was told detects ovarian cancer; I now know that this won't elevate in some cases especially MOC.
After seeing the gynaecologist and receiving the news that my Ca-125 blood markers were completely normal being at 2; Above 35 indicates a problem. I left feeling completely reassured that it wasn't cancer but was sent for an MRI scan to have a better look at the 'cyst' . I was told that the MRI scan indicated that it was not cancer but a complex ovarian cyst that could potentially have borderline cells ( cells that are not cancerous but not completely normal ) which is also common in young women but they would surgically remove it and try and save some of my left ovary.
Due to the pandemic and the national lockdown being announced they would rescan me and check my bloods in three months time. With a new sense of security I continued on with my normal life but during these three months my symptoms became much more apparent; I began to experience bloating, tiredness and needing to go to the toilet more urgently.
Bloating is one of the main symptoms of Ovarian Cancer.June 2020 after attending my scan and blood appointment my markers were still normal but the cyst had grown and was now at 12cm. I had my first Laparotomy surgery on July 31st and was told that everything had gone really well and the cyst looked normal and they had even managed to save some of my left ovary. All I needed to do was to wait for the pathology results to come back within two weeks to see if the cyst had borderline cells but thankfully the ordeal was over.
Laparotomy surgery round 1. Two weeks and no results.. my instincts were telling me that something was wrong and I left it to the last minute to ring for an update. When I spoke to the doctors secretary he said that my results were not back yet but accidently let slip that a Macmillan nurse would be contacting me...
Instantly, I thought Macmillan means cancer and I broke down and rang a friend who was a nurse for some reassurance. She knew and I knew but she told me that it might not be but its best to prepare yourself for the worst. I received the call later that Friday evening and was told to come back into the hospital on Monday and to bring someone with me. For all my previous appointments and surgery I had to come in alone due to the pandemic. I asked if it was cancer and she told me that the full results weren't back yet but to try not to worry and enjoy my weekend as nothing has happened yet.
On Monday the 17th of August I came into the hospital with my partner and anxiously waited in the waiting area. I tried to hide the fact that I was the only person with someone with me and convince myself that of course it wasn't cancer. I was finally called through and given the devastating news by my surgeon. Not only was it cancer, but during the surgery the tumour had split. I was given an initial stage of 1c1. I would need re-staging surgery where they would remove my left ovary and fallopian tube, omentum, peritoneum and take various biopsies throughout my abdomen to see if the cancer has spread and potentially adjuvant chemotherapy.
I was in complete denial and brushed it off for a while refusing to accept the severity of my situation. The week before my staging surgery after attending a CT scan it hit me. I was petrified. I wasn't ready to die there was so much that I still had to do and google only made it worse. I knew if my cancer had spread outside of my pelvis I would be given a terminal diagnosis. I underwent my second Laparotomy surgery on the 28th of September 2020 and awaited the news. The wait was agonising and my mental health was suffering but thankfully I received the news that the cancer had not spread.
Laparotomy surgery round 2. Having Ovarian Cancer has had a detrimental effect on my fertility but after two rounds of IVF I managed to freeze 24 eggs. I then attended The Christies to speak about chemotherapy and was faced with a very difficult decision. The chemotherapy had a very slim chance of working as MOC doesn't respond well to conventional treatment but because my tumour had split during surgery there could still be undetected microscopic cells present so it would act almost like an insurance policy. However, by having chemo that would completely eradicate my chances of having children naturally in the future and although my IVF was a success that does not mean that any of the eggs will work.
Awaiting my first jab. During my IVF treatment Matt had to inject me twice a day for 6 weeks. Ultimately, myself and my oncologist decided that chemotherapy was not the right option for me right now. I have struggled with this decision ever since and am unsure if I have done the right thing . I live in constant fear of recurrence that is only elevated by three monthly bloods and six monthly scans and I am left with scars that remind me every day of my cancer journey. After a cancer diagnosis you will never be told you are 100% cured but simply have no evidence of disease ( NED ) and this is something that I have to try and learn to live with. Although my prognosis is good, where 9/10 times the surgery is curative I have met women who were the same stage as me whose cancer unfortunately returned and due to the rarity and limited treatment options are now facing a terminal diagnosis.
The scars I have been left with post surgery but very grateful for. And this is where The Mucinous Ovarian Cancer project comes in...
MOC represents 1-3% of women diagnosed with Epithelial Ovarian Cancer and due to its rarity, there is no active research or clinical trials on offer in the Uk at this time . Currently, no ovarian cancer charity in the UK is looking into this cancer and all the current research and breakthrough drugs simply state non-mucinous which is devastating. A trial was attempted in 2013 but unfortunately, they struggled to accrue enough patients with Primary Mucinous Ovarian Cancer as this particular type can be mistaken for secondary cancers from other locations so it was not completed. Since then, it seems that it has simply just been forgotten about.
The prognosis if caught early is good, however if the cancer is to return which is a very real possibility or the cancer is found at a later stage the prognosis stands way short compared to the other subtypes. MOC acts as its own entity and does not respond to standard ovarian care treatment options such as Carbo/Taxol or any other type of chemotherapy or treatment on offer for Ovarian Cancer patients. For this reason it is so important that something changes as it is in great need of targeted treatments to help improve our prognosis.
We all have women that are important to us whether it be family or friends. We should do this for them. For the first fundraising event me, my partner Matt and a good friend Rhys will be taking the 278 mile trip cycling from London to Paris on the 14th of June 2021. After two open abdominal surgeries this will be a mental and physical challenge but I am working hard to regain my fitness and strength and we can not wait to get started.
Matt, myself and Rhys at Kinder Scout training for our fundraising event. Thank you for taking the time to read this, I hope that no matter how big or small you will join me in my mission to raise funds for research into this rare subtype of Ovarian Cancer. If you would like to get involved or take part in any fundraising events please do get in contact.
The MOC Project's first target has been set to £5000, which, once hit will increase to the next target, until a sufficient amount of money has been raised so any donations would be greatly appreciated.
Sarah x
To see what current fundraising is being undertaken by The MOC Project and our journey leading up the event:
Instagram: @The_MOC_Project instagram.com/the_moc_project
Facebook: @TheMucinousOvarianCancerProject https://www.facebook.com/TheMucinousOvarianCancerProject/
Organizer
Sarah Burns
Organizer
