You don’t have to wait to be nominated – Share a #loveyourovariesphoto now

To help women know and remember the symptoms of ovarian cancer, Finding Cyril is trying to launch a viral campaign- the #loveyourovariesphoto. As in my Facebook post below: take a #loveyourovariesphoto, list some symptoms and nominated some friends to do the same. Every person who partakes is another person who will learn what symptoms to be wary of.

As I mention in my blogs, no more should women be satisfied with the diagnoses of IBS for symptoms that are indicators of ovarian cancer. Under the picture I have written what I put on Facebook for you to copy and paste with your photos.

I will aim to post as many of your photos on the blog and on twitter as possible! Be sure to tweet them to @FindingCyril if you want them in a post. You can also email them to findingcyril@gmail.com.

I have also included out text donation code FICY58 with the campaign. If you are a UK resident, send this code and an amount (e.g. £2) to 70070 to donate. All donations go to The Royal Marsden Cancer Charity.

Thank you for for your support! Cant wait to share all your photos here!

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Persistent pelvic and abdominal pain, constant and increasing abdominal bloating, difficulty eating and the urge to wee more often. I know the symptoms of ovarian cancer. NAMES- Do you? What symptoms can you name? Spread awareness and show love for your ovaries with a ‘Love your ovaries photo’. If you want to donate to The Royal Marsden Cancer Charity, text FICY58 £2 to 70070 to donate. findingcyril.com #FindingCyril @FindingCyril

Other symptoms can include:

  • Irregular periods or vaginal bleeding after menopause
  • Lower tummy (abdominal) pain
  • Back pain
  • Passing urine more often than usual
  • Constipation
  • Pain during sex
  • A swollen abdomen
  • Feeling of fullness or loss of appetite
  • Loss of appetite or a feeling of fullness in the abdomen
  • Feeling or being sick
  • Constipation
  • Tiredness
  • Shortness of breath
  • Noticeable swelling of the abdomen

 

#FindingCyril

My fifth chemo session – Halfway to surgery

IMG_0956So this past week has gone quite well for me. I had one day where I was sick but it passed quickly this time and I did not have to visit A&E! I also got an updated tumour marker result… In three weeks, my markers have gone from 3052 to 375! This news gave me such a boost and the doctors are really happy with the result.

I felt quite washed out last weekend so it was nice to spend some time relaxing in the garden; on Sunday night, my boyfriend, my friend Chloe and I sat outside wrapped in blankets drinking tea, eating fruit and cheesecake and surrounded by candles (there’s a photo in the slide show). We spent a couple of hours chatting about all sorts! This was the perfect way to calm myself down before my chemo session the next day. I get my moments where the anxiety can get too much, and I don’t always feel I know how to handle it. However, I know that this garden time is one to keep on the list for these moments… despite the insect bites that I got!

‘Cyril’ in my ovaries means that, for the moment, I cannot be at work. It is hard to put down in words how much I miss the pupils and the staff I work with. I love my job, feel privileged and honoured to be part of such a wonderful school and cannot wait to be back there. I was beaming from ear to ear when I recently received beautiful cards and gift from my colleagues and pupils. I look at these every day because they help me to stay positive, and they remind me of just how many people are fighting Cyril with me. This continued love, encouragement and support really does mean the world to me. It’s helping me to show Cyril that he is not wanted and must simply go away! I looked at these reminders before I went for session number two of cycle two yesterday.
I felt slightly more nervous having chemotherapy yesterday than I did last week because I was having a blood transfusion, which is a new experience for me. After going through the regular things yesterday morning (checking weight, putting a cannula in, taking bloods and talking to the doctor), it was time to get started with the transfusion. My haemoglobin fluctuated again over the past week so they decided to give me two units of blood to avoid me becoming lethargic and breathless. The blood transfusion process took five hours. Initially this felt like a lifetime, but surrounded by loving family and friends it flew by. My wonderful nurse and doctor made sure that the blood was covered up to avoid me feeling faint at the sight of it and potentially being on the floor before the infusion even began!

My friend Rosie joined me for my chemo session yesterday and brought the card version of Guess Who, which was a great distraction and kept my focus off the drugs. We then moved onto the ‘guess the celebrity game’ followed by ‘Heads Up.’ My cousin David proved himself to be pretty good with accents and impressions! I did of course have the famous foot massage by auntie Roz! As I was sitting and lying down for longer than normal yesterday, the foot massage helped to improve my blood circulation (and transport oxygen though my the cells in my body) over the five hours. There were moments where I felt hot, tired, stiff, agitated and woozy but these feelings seemed to pass quickly because I had lots of people to distract me and talk with. When my nurse came round and said, “Four minutes left,” I felt a sense of relief and achievement at having managed the five hours.

Before starting the chemo yesterday, my nurse gave me an injection of a drug called Zoladex. This goes into my ovaries and is given once a month. It works by essentially telling the brain to stop the ovaries from making oestrogen. Once you stop taking the medicine, the ovaries begin functioning again. The doctor’s aim is that it will put my ovaries ‘to sleep’ during chemo because otherwise ‘Cyril’ can cause damage to the ovaries and affect fertility. Research studies have shown good result from patients who have used Zoladex. In my case, I know that ‘Cyril’ has affected my right ovary but I’m unsure for the moment if he has affected the left ovary, which is one of the reasons why I am having Zoladex. So I don’t know at this point if my left ovary can be saved and even if I want it to be. I am at higher risk of ‘Cyril’ than other women. I am in the very rare situation of battling ‘Cyril’ in my ovaries at a young age and because of the BRCA gene mutation. This makes me feel uneasy and very scared to possibly keep one ovary even if there is a chance that I can. I feel that will I be continuously wondering whether the other ovary will be affected by ‘Cyril’. For me this is too much anxiety to bear because the BRCA 1 gene mutation (which caused ‘Cyril’ for me) is not leaving my body. This is a very hard thing to get my head around but I know that even if I cannot have my own children in the future, there is more than one way to be a parent.IMG_0982

Once the Zoladex injection was in it was cold cap time. I was quite excited to get the cap on (I was so hot yesterday!). This why I could not understand how my amazing cousin David who joined us yesterday had a sweatshirt on all day! My nurses prepared my hair and gave me my pre-meds. They know I have funny reactions to pre-meds. These range from: asking for jellybeans, holding the sides of chair, giggling and saying things like ‘I feel like I’m flying!’ Yesterday, I did all of the above! After thirty minutes of the cooling cap on, the chemo started to drip into my veins. This meant that boxing match with ‘Cyril’ started up again. ‘Cyril’ has learned that chemo is not a contender to mess with. I had my regular foot rubs with the cap on. This week I have to thank my superstar auntie and wonderful friend Rosie because they both did this for me!

Whilst the cap was on, Rosie and I were talking about #FindingCyril and its aim to raise awareness of ovarian cancer amongst women of all ages (with and without the gene). I encourage women to think carefully about the symptoms, and if you have experienced any of them consistently even for a short amount time go to your GP and been seen. This is because ‘Cyril’ in the ovaries is often known as the ‘silent killer.’ Also, if you get checked and all is okay but the symptoms come back, you must get checked again. Remember this ‘silent killer’ is hard to find and diagnose (it can take months), and this often results in it being found in the advanced stages. If you have any further questions please email Finding Cyril.

Yesterday was such a long day and I didn’t leave hospital until gone 7pm. It was strange because I didn’t instantly feel tired. I think this was because I felt a sense of achievement for completing the long day. In the coming days, I will feel the full effects of the blood transfusion. I will never know the person who donated the blood that I received, but I am forever grateful to them. I am so happy that the post I wrote last week encouraged people to give blood. Thank you to all of my friends who supported the @JoelyBearAppeal last weekend by attending their blood giving session. During my transfusion, Rosie and I asked the nurse my blood type. It turned out to be the same as Rosie’s (A positive). This made us feel like from the two units of blood that I had been given, the unit of A positive blood that Rosie donated on Sunday somehow contributed. It’s great that my boyfriend’s work colleagues have also been inspired to give blood since learning about me needing a transfusion. My brother and his friends are also planning to set up a blood donor session soon; the aim will be to encourage people to sign up to donate at a blood drive they arrange at Edgware hospital – more details on this to come.IMG_0967

Please take a look at my photos from this past week; relaxing in the garden the night before chemo, the chemo session yesterday, and the gifts and cards from school that make me smile and face my recovery so that I can get back to working with my pupils and the best staff team in the world!

I would like to finish this entry with a funny story from last night. As I have explained, I have scalp cooling for my hair (I will be writing about this process and how to protect and support the hair between treatments in another blog post). So far it has worked really well. Yesterday evening, I went to the toilet before bed. I turned round to flush the toilet but as I did, I noticed a clump of hair on the toilet. It was strange because it didn’t look like it came from my head, but naturally, my first instinct was to panic. My dad came running upstairs. He looked at it and was baffled. He was as confused as I was. “But it can’t be from your head!” he said. “Well then where has it come from?!” I shouted back. We stood silently for a few seconds trying to find an answer. All of sudden, my brother chirped up from his room. He said, and I quote, “No, no! It’s my armpit hair….I was grooming earlier and thought I flushed it properly.” My panic fizzled away and we had a good laugh, not only with the situation but also AT my brother. It was so great to be laughing before falling asleep because, as they say, laughter is the best medicine!

Note to self: Check for Josh’s armpit hair in the toilet before sitting on it!

IMG_0971I once again urge you to talk with your family about your family history of breast and ovarian cancer. If you feel you have a history of these cancers, go to your GP and get the ball rolling for genetic testing. Please refer back the article about on Spreading BRCA awareness for information about gene testing. Remember that knowledge is power, so if you find out that you carry the gene mutation you can make choices that are right for you. Once I knew that I carried the BRCA 1 gene mutation I made the choices of getting my breasts and ovaries checked which has helped me with ‘Cyril’ because my doctors know that it was not there seven months ago when I last had a pelvic scan and a CA125 blood test. @BRCAUmbrella is a great group for more support on genetic testing. If you have any further questions about my experience with genetic testing, please email Finding Cyril.

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#FindingCyril

 

 

 

A new way to donate

Finding Cyril is now offering sponsors the option of donating to our chosen charity, The Royal Marsden Cancer Charity, via text. Text FICY58 and an amount (e.g. £10) to 70070. Thank you for all your continued support.

Please note, this option is only for UK residents. If you live outside the UK and want to donate, please click the JustGiving image below.
JustGiving - Sponsor me now!

PinterestPost_736x1128_FICY58_1468320661994

#FindingCyril

My fourth chemo session – Start of the second cycle

Yesterday, I completed my fourth chemo session. This marked the start of cycle two!

Unfortunately, I was sick (for the first time) over the weekend, so I ended up in A&E. As a chemo patient, I was seen immediately. It turned out to be an upset stomach and nothing related to ‘Cyril’ or my chemo, but I am glad I was checked over. It was a long night; I got back home at 5AM, and the A and E experience shook me. I felt disheartened and almost blamed myself. I started to question whether I had done something wrong. Messages from my amazing friends helped me snap out of feeling low.
 Below there are a few of the messages I received :
 From Dominique
So I was thinking about it. When you’re feeling ill – that’s when the battle between chemo and Cyril is taking place. So your body is the arena the battle is taking place in. So every time you don’t feel good you need to think – chemo is taking on Cyril now and they are having their battle, and when you feel better it’s because chemo knocked Cyril out of the ring.
 From Jessica
This is just a minor set back after a long line of massive achievements in the last few weeks. You are doing so well and we are all so proud. You made me so happy on Friday and I can’t wait for the next time. Get some rest and love you lots xxxx
 When I walked into the chemo room, I felt even calmer than last week. The fear melts away as you get used to the routine. The doctors where not worried about my tummy upset (it seems to have been food related), and meeting the dietician will help me to understand more about what to eat and what not eat. My bloods came back normal. However, my iron is still too low. This means I require a blood transfusion next week. I am not worried about this because I know that low iron can occur with chemo. Also, my professor feels that I have dealt with the dosages so well that he increased the levels of one particular drug. This means they are hitting Cyril even harder! It will also mean that my body will be hit harder, and I may feel worse, but paradoxically, that’s a good thing. Also, I received positive tumour marker results. After round one, the markers have gone from 3,000 to 1,000!
 The nurses and doctors are so kind and caring; when they found out I have never had blood transfusion before, they asked me if there was anything I was worried about. I spoke about feeling anxious about seeing the blood! Due to this, they said they can cover the blood bag so I won’t see it. I never imagined myself having a blood transfusion. I am so thankful to the people who donate blood, because they have made it possible for me to have the transfusion. When I am back to full health, I will do my part by giving blood, because I know what if feels like to need the blood. We are lucky to have organisations like the Joely Bear Appeal, which run local blood sessions three times a year. For more information on the vital work that this charity does please look at @JoelyBearAppeal and Facebook.com/JoelybearOn Sunday 10th July, The Joely Bear Appeal hosts their 65 blood donor session as Yavneh College in Borehamwood from 9:15-4:30. A supervised crèche is provided for children.Yesterday, whilst I sat in my chemo chair, I realised just how vital blood donations are. If you are able to, I urge you to consider donating blood. As I realised yesterday, you never know when you will need it.
 It was great to meet a member of the press team at the Royal Marsden. We discussed the Finding Cyril website and about things to come on the website. So watch this space …
I also had my regular foot massage from amazing auntie. Whilst I fight Cyril, she is fighting a fear of trains for me. I am so grateful and touched by what my aunt is doing. Staff and patients have recognised how great she is, and how massaging feet is a wonderful idea! In the future, my aunt has decided that she will be going back to the chemo room at The Marsden to volunteer in this way and offer a bit of solace and support to other cancer patients.
 Please take a look at the photos from my 4th session and have a look at some of the messages from my family.
 #FindingCyril

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My third chemo session

Two days ago, I had my third chemo session. Remember, I have them weekly, in smaller doses, as I have scalp cooling for my hair. This session marked the end of cycle one! Cyril is realising that he is not wanted and must leave. This brings me closer to the operation, which I am also happy about. When I walked into the unit on Monday, I didn’t feel the usual fears. Even the doctor noticed how calm I was! This is because I now  know what to expect. If it were last week, I probably would have freaked about being told my iron levels are on the low side, meaning that I might need a blood transfusion next week. However, this news didn’t panic me. I’d like to mention that this is a common thing that can happen when having chemo. I will be eating foods rich in iron this week to see if that helps, and if it doesn’t then, it’s not an issue. In the words of my dad, ‘after a transfusion, you feel on top of the world. You’ll have more energy than all of us!’
My brother joined us for this session.  We played a great game, similar to articulate, where you had to describe the celebrities on the stick you picked up. We had lots of laughs and some interesting guesses were made! Thank you @JennieDallal. I also had my regular foot massage from my amazing Auntie, who comes equipped with her oils and creams. The nurses have spotted her and told her how wonderful they think she is. The foot massage takes my mind off the cold cap, generally calms me down, and as you can see from the photos, actually sent me to sleep yesterday!
My wonderful nurse also came to me. I simply adore her. She is there to talk to whenever you need (phone and email). I feel I can ask her anything. For example, I was worried about getting gel nails, as I had heard there may be risks associated with the drying light, but she put my mind at ease. She has been there from day one, (from the night I was admitted with fluid on my tummy), and she will be by my side throughout the whole journey. It’s remarkable how quickly you feel a bond growing with the team of people around you. I have already shared my pixie collection with my team of doctors. They (the pixies, not doctors) are my good luck charms. I carried one with me when I got my results and when I met the professor handling my chemo. I want each person working to make me better to have a pixie. My nurse really liked the one that I chose for her!
I know it’s now only Wednesday but I already feel ready for next Monday. I am getting used to the process so it does not feel so scary. I want to get cycle 2 going, so I can continue to show Cyril who is boss. The start of round two will mean a slightly longer session, but it means more drugs will go in my system and remind Cyril to go away!

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#FindingCyril

Spreading BRCA mutation awareness

img_6204Today I had the privilege of meeting Caitlin Brodnick (@caitybrodnick), who is 31-year-old comedian living in New York. Caitlin carries the BRCA 1 gene mutation and made the life-changing decision to have a preventive double mastectomy. I am currently battling ‘Cyril’ in my ovaries, but my mind is made up that when I am back to full health next year, I too will have a preventive double mastectomy. My current situation makes me feel that my breasts are a ticking time bomb. When I watched Caitlin’s documentary; ‘Screw You Cancer,’ which documents her journey, I felt inspired by her story. Previously, the idea of removing my breasts seemed terrifying. Meeting Caitlin today, and seeing how happy she is with the surgeries, fills me with hope for when it is my turn to go through it. As Caitlin says, ‘they are DIY boobies!’ But these DIY boobies will take all my fears away, and as I discovered today, the constant need for a bra (so every cloud and all that!)

Caitlin spoke of growing up knowing that cancer was prevalent on her father’s side of the family, but it took her a long time to want to take the test. After finding out that she tested positive, it took her a while to comes to terms with it and decide on her next steps. I felt similar to Caitlin. When I heard that I had tested positive, I did not know what to think. I was so anxious about this news, and waiting for breast screening at age 30 did not sit right with me. I immediately went to have my breasts checked and a plan was put in place to have screening every six months. At the same time, I went to my gynecologist to have a pelvic scan and CA125 blood test, which would be once a year. My anxiety about the potential risks of this gene started to get better because I was being checked. However, in the back of my mind, I always wondered about what would show up on the screen. Lumps in my breasts were found, but thank God they were always benign.

Even though going for constant checks is frightening and leaves a nervous feeling in my stomach, I do not regret being tested. In fact, I am thankful that the BRCA 1 gene mutation was discovered in my family, because knowledge is power. It allowed me to make informed decisions about my body. Even though Cyril has hit me at an age that is very rare (most probably due to the gene mutation), I am comforted by the fact that I knew about the gene mutation and was getting myself checked. If you have strong family history of breast and ovarian cancer, I urge you to visit your GP and have the discussion about genetic testing. As I prove, it can hit earlier than the national statistics state in BRCA 1 and 2 positive people. It is a very challenging test to go through, but knowing allows you to make plans for the future and take steps to manage the risks. I had my test at Northwick Park Hospital and the genetic specialists support you through the whole process.img_6202

I also had the privilege of meeting Caroline Presho, who is head of the BRCA Umbrella group. Caroline works tirelessly to raise awareness for BRCA mutations and provides vital support to lots of people. We spoke today about the issue of misdiagnosis; the need to raise awareness amongst GPs and how women of all ages with BRCA gene mutations need to be vigilant of the risks these mutations cause. I look forward to doing more work with Caroline in the future and being part of a group that is bringing BRCA gene mutations to the public’s attention and making people stop and think.

To follow Caity’s story, please click this link to view her documentary.

http://video.glamour.com/series/screw-you-cancer

Please have the conversation with your loved ones about your family history regarding breast and ovarian cancer, and get to the GP to see if you are eligible for the testing. The links below will provide you with further information.

http://www.cancerresearchuk.org/about-cancer/causes-of-cancer/inherited-cancer-genes-and-increased-cancer-risk/genetic-testing-for-cancer-risk

http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

http://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/genetic-testing.html

#FindingCyril

Support and love from France‏

At the start of this academic year, I created a link with a French class in France at my school. The English and French children have been able to Skype most weeks, write to each other and exchange gifts. We look forward to welcoming the French students next year! Although I have not yet met the French teacher and the children, I value the teacher as a good friend and the students feel like my students too. They have a special place in my heart.

When I arrived home from treatment two a package was waiting for me. Every French student had written me a beautiful letter. Every letter made me smile and filled me with a little more hope. I want this wonderful class to know that I will treasure these letters forever, and whenever I feel down I will read them. Their beautiful words and pictures help to keep me in the positive mindset needed to show Cyril who is boss!

Please have a look at the slide show which shows these letters. I feel honoured that the class in France is following the website, and their support and thoughts mean more to me than I can describe in words.

I have found Cyril. I have now started to show Cyril the exit. I am one lucky lady to have people of all ages fighting Cyril with me.

Thank you again to the amazing French class. I can’t wait to see you soon, and continue all the wonderful work we are doing together!

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#FindingCyril

Analogies to help you think positively

We have already said that cancer does not discriminate. It can choose anybody of any age. I had an overwhelming moment prior to the second chemo session. I shared how I felt with my family. I described my emotions like a painting of dots. I felt like the small black dot and everybody else around me represented the colourful dots. Everybody told me that the latter is a unique way to describe these emotions. My family understood why I felt like the black dot. I had been given the shock of my life. Later on, I said to my sisters that I want to be a gold dot on the painting and we decided that this is what I have to push myself to continuously feel because some of this battle is about my strong and positive mindset. However, it is normal to have moments where you feel like the black dot.

imageThe analogy of the painting can be extended to what has been spoken about in previous blogs. That is to say, the need for women (young women included) to be more aware about ovarian cancer. If you feel you have any of the symptoms then you must keep going to get checked. Don’t allow the symptoms to be confused for IBS. Don’t take the risk. This is because we must be vigilant in terms of looking out for signs and symptoms of ovarian cancer, and checking things that worry us or we are not sure about. Being extra cautious keeps the chances of ever feeling like the black dot as low as possible. All women must remain colourful dots (you can choose your colour!) however difficult it may be.

Another analogy I heard came from my boyfriend, Jonny. He said, ‘Imagine you are in a car, driving to a destination. As you are driving, there is an accident ahead and you end up stuck in traffic. The whole time you are stuck in traffic you are thinking about what you could be doing at the destination (who I’d see, who I could be talking to, etc). ‘He continued by saying, ‘The waiting in traffic, knowing that you may be missing things, is frustrating but ultimately, the traffic eases and you reach the destination a little delayed.’ This analogy made me feel better because even though ‘Cyril’ has delayed aspects of my life, ultimately I will still accomplish them albeit a few months later than I wanted.

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#FindingCyril

My second chemo session

Today marked the second milestone on my road to recovery. After having my blood taken and the test coming back as suitable to proceed, I started my second session of chemotherapy. Below are some pictures of my experience.

Thank you to doctors and nurses of the Royal Marsden for keeping a smile on my face and to my aunt for the foot rubs!

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#FindingCyril

Misdiagnosed as IBS

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“This cancer is aggressive. It could even have come on in a matter of weeks.” This is what my consultant told me after giving me the diagnosis. The shock of the diagnosis was even more compounded by the fact that I had a pelvic scan and CA125 blood test 7 months ago. My one saving grace is that the 4th doctor I saw picked on the cancer from the symptoms I had.

The aim of this blog is to raise awareness to the fact that these symptoms can be easily misdiagnosed as IBS. This is what happened to me 3 times in the space of two weeks. Initially, my GP, a gastroenterologist and an A&E doctor all assumed I had IBS and constipation after feeling my stomach and doing a generic blood scan. The symptoms I had included:

  • Severe abdominal bloating (I was asked by several people when I was due as I looked 4 t0 5 months pregnant)
  • Pain when urinating
  • Feeling full quickly
  • Severe constipation (I hadn’t gone to the toilet properly for almost a week.)

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Due to the misdiagnosis, I was prescribed laxatives. Whenever I took these, I felt worse and the pain and discomfort intensified. Once I was diagnosed properly, my doctor explained why this was. The bloating was from a huge build up of liquid around my organs (they drained off almost 5.5 litres). From what I understand, this liquid put pressure on my bowels, constricting them and stopped me from using the toilet. When I took the laxatives, I felt worse because I got more and more clogged up.

These symptoms came on quickly over a couple, of weeks and as they went on they intensified. It wasn’t until I went to A&E for the second time (due to the pain and discomfort) that they finally did a CT scan.

These symptoms can be too often be confused with bowel issues. If you experience these symptoms, please go straight to the GP. Nag, moan, complain and make a pain of yourselves if you need to girls but please make sure you get checked! I am just very thankful, grateful and happy that my symptoms were picked up on and that I am able to have the treatment to get better.

If you experience these symptoms, ovarian cancer must be considered regardless of age. It is rare at a young age but it can happen.

For more information look at the websites below:

http://www.nhs.uk/conditions/cancer-of-the-ovary/pages/symptoms.aspx

http://www.targetovariancancer.org.uk/about-ovarian-cancer/what-ovarian-cancer/ovarian-cancer-symptoms

https://www.macmillan.org.uk/information-and-support/ovarian-cancer/understanding-cancer/signs-symptoms.html

#FindingCyril