Hey everyone!

[EloiseyWeezy]

I'm new to this website today, finding it all a bit confusing! Lol! I am 24 and was diagnosed with ovarian cancer in March. Everything's happened very quickly and my mind can't really keep up with the reality! I am looking for support and advice off anyone who can help me out I would really appreciate it! Thank you!

[Hidden]

Welcome to our support forum, I am sorry you have had reason to join us, I am also shocked how young you are .....you will get a lot of support on here... just sending you my best wishes....Love x G x

[EloiseyWeezy in reply to Hidden]

Thank you for having me! It's been nice reading up on some stories and things on here Yeah I am very young and still in shock I am one of few my age to suffer from this! Thank you for replying. X

[Hidden]

Hi, it is quite shocking the age you are. You didnt mention your stage and grade of the disease. My niece was 42 hers stage 1 and is now clear of cancer, my late wife was stage 3c and she survived almost 5 yrs. We are all differant in how we respond to treatment. As you are new, its quite important to be told your stage and grade and its also quite important to monitor your CA125 blood readings. I also found it useful to get copies of any CT scan results so you can study them yourself and translate into layman terms through google. I also think its useful that a loved one/partner is with you on your clinics and treatment. There are plenty of ladies on here who will support you, I presume you are on chemo as we speak. Rgds Paul xx

[EloiseyWeezy in reply to Hidden]

I was diagnosed at stage 1c, I had surgery that removed my left overy and fallopian tube. I feel as though I have been passed pillar to post and not really being taken seriously? My CA125 results have been coming back positive and I now have a cyst on my right overy! I haven't had any sort of chemo but there were talks of radiotherapy? I have support from family and friends but still am afraid to worry them, especially as I am finding this very hard to understand myself. Thank you for getting back to me. X

[ScardyCat40 in reply to EloiseyWeezy]

Is there a Macmillan nurse at your hospital that you can talk to? It sounds like you could do with someone to advocate on your behalf. My family have been a great support to me and came to my appointment with me during diagnosis and first line treatment. However I went to all of my follow up appointments on my own and through second line treatment by myself and I managed to cope.

[Hidden in reply to EloiseyWeezy]

Dear Weezy,

It must have been so distressing for you to be passed from pillar to post, I guess the fact you are so young, they didn't recognise that you had OC.

I am pleased that you have support of your family and friends but also understand your desire to protect them and wouldn't want to worry them, (what a nice person you are)

I think there is a younger woman's group on Ovacome or at least I think they can put you in touch with younger women.. (Ovacome is the charity that runs this forum)

You might want to speak to them on the phone their number is

0845 371. 0554 or tel [phone] (office hours only.)

Love and best wishes x G x

[Hidden in reply to Hidden]

Dear Weezy,

I have also noticed that you say that you now have a cyst on your remaining ovary, my guess is that they didn't remove it because you are still child bearing age, I am so sorry.... did they give you the number of your CA125 ? you say that they said it was positive doesn't this mean that it is higher than what it should be (i.e. 35 or under is classed as normal) there are times when the Ca125 is risen for reasons other than cancer..... please try and give the helpline a ring on Tuesday they might be able to clear up some questions that you must surely have....

Try not to carry this all by yourself most people need support ... especially someone as young as yourself you must feel so isolated....

i can't get you out of my mind and wish I could give you a hug.

love x G x

[jennybutler in reply to EloiseyWeezy]

Hi Weezy your lucky caught so early they only had to take away one ovary and fallopian tube,I am positive you will get through this all clear especially ca125 being positive , a great marker. But I don't underestimate your concern but be positive and welcome to ovacume I was diagnosed 4 years ago stage 3c serous ov and still here after surgery and chemo. on my 3rd line now they can do so much even if you need more treatment pretty sure not.

much love Jenny xxx

[Tay-123]

Hi Weezy7

Just wanted to say welcome to the site and I'm sure you will get much support from the people on here. It is very unusual to hear from someone as young as yourself with this problem. I was diagnosed stage 1c, but had chemo treatment following surgery and things seem ok at the moment. However, can't say I'm qualified to advise as much as some on here and the Ovacome helpline nurses may be the people to contact, you would be able to chat in depth with them. Just wanted to welcome you, even though it's not a club anyone wants to join, we're glad you found it.

Tay xx

[Marianna]

Sad that you have OC. But pleased you found us. Hope you find some answers and support. I know I did. Good luck xxx

[hellwen]

Hi,

I am 33 and was diagnosed last year. It was scary and daunting at first but things will hopefully be better the more you talk to people. I was afraid of worrying my family too but I found my Macmillan nurse to be amazing...there are lots of other charities that can support too.

Best wishes. Helen xxx

[Hidden]

Welcome! I was diagnosed 1c too and had surgery and chemo.

All of us on here have had to learn an awful lot about OC - knowledge we'd happy never have bothered with.

The single most important thing I've learned which I didn't realise at the start, I think, is that every woman's disease is her particular variation on a theme. There are many variations. And all the elements add up to different ways forward. The letters from the hospital usually spell out the details. Ovacome's got good info about the different sorts.

I wondered whether it might be worth you contacting the Teenage Cancer Trust, who - despite their name - work with young adults also. A search on their web-site on "ovarian" brings up 50 items, including that OC is becoming more common among younger women.

Not trying to get rid of you, we're delighted you've found us!

All the best

Chris xxx

[citrine]

Hello and welcome. Sorry that you are experiencing OC at such a young age. Hope you will find this site helps.

Love Mary xx

[sweetpea]

Hi, welcome to our club ( the one no one 'wants'to join) This is such a young age to be hit with such a diagnosis. I don't often give advice as I feel I'm not qualified, but your Macmillan nurse is the one to chat to. I always find face to face is better, I take it in more and feel I can ask anything. The Ovacome nurses is also a good option. I hope you get some help soon, no good bottling it up. People on this site are wonderful. Love Ann xx

[cupakediva75]

Hi weezy7,

Sorry to hear about u r situation, I too was 24 when I had ovarian cancer, we have something in common, I'm now 39, I was cancer free for 13.5 years. If u ever need to chat, leave me a message. Take care. Xo

[Sandy79]

Hi and welcome! I'm 34 and had my right ovary and Fallopian tube removed two weeks ago. It was an Ovarian tumor called granulosa cell tumor. It was cancer and at stage 1a. No chemo, just surgery. I'm recovering well and I believe that stage 1 is very good prognosis! My cancer experience has been fast and furious! I was seeing a fertility specialist and happened across a tumor during my very first ultrasound (trying to see why I couldn't conceive). Was in surgery about 3 weeks later and now CANCER FREE!! There is hope and plenty of support here! Keep a positive outlook! Stay optimistic!!

[TrishLey]

Welcome to the group no one wants to join but are glad they did. I was just turned 40 when diagnosed. You will find information, support and love here. xxx Trish

[TornacLiz]

Hello - good luck on your journey. Everybody's journey is unique and you will find your own path through this. This forum is very supportive, especially if you have a specific question. But it can also be scary to read other people's stories. So be kind to yourself when coming to this forum - other people's journeys are not yours and remember in general, there are lots of people out there who do well in treatment and they are often the ones less likely to post. Very best wishes, Liz

[thesilent1]

Hi, welcome to our club but sorry you have had to find us, especially at such a young age.

I suggest you write down your questions, no matter how silly you feel they might be, and take this with you to your next appointment and go through them with your doctors. We all have questions that we need answered so don't worry. I would also suggest you take someone in with you as an extra pair of ears is also useful in these situations.

To be caught at stage 1c is good in my opinion, but you need to know A treatment plan and the only person who can answer this is your oncologist. A lady who goes to my Church spoke to me last summer following my surgery and just as I was about to start chemo. She told me that she had been diagnosed 10 years previously with grade 1 ovarian cancer and following surgery and chemo, she has never looked back, so I hope this will help you (she is now 11 years down line).

We are all diagnosed at different stages, unfortunately most ladies are not diagnosed until they are stage 3 due to the nature of this disease ( I am 3b), so keep telling yourself, even on your low days as you most likely will have some, that you have been caught early and are in the best possible place to make a complete recovery.

I know you will be supported on this site, so remember to let us know how you are getting on. Sending virtual hugs your way! Ann xo

[Hidden]

Hi there.. and welcome. You'll find that there are lots of people who are on here regularly and are at hand to either help you themselves or point you in the right direction. I can't imagine having this disease at such a young age. Like Gwyn says, your doctors may have chosen to be as minimally invasive as they can in order to preserve your fertility. You're at an early stage and as your disease is contained (i.e. 1c), so maybe radiotherapy is the way to go. It's good that it's been found because doctors weren't probably looking for Ovarian as has been said too. I think Chris' idea of calling the Teenage Cancer Trust is a good one because when you get the disease can affect how you feel and the specific issues you may have to deal with. We're here for you though so do feel you can belong totally to our group too. Were you told what type of Ovarian you have I wonder? Certain types are more prevalent in younger women. As we're always saying, we're not the same and Ovarian as an umbrella term covers different types (i.e. serous, which is the most common type). Traditionally, women with Ovarian have been given the same treatments but therapies are beginning to become personalised and so it's important to know exactly what your diseases is (i.e. serous), the grade (i.e. low grade or high grade) and the stage (i.e. Stage I, II, III or IV) Some types of Ovarian have sub-types so, for example, there is a low grade version of Serous. Low grade has a different pathway and behaves differently to high grade. It also have different names like LGSPC (Low Grade Serous Papillary Carcinoma) or Low Grade Ovarian. I was thinking that the cyst on your remaining Ovary may just be to do with ovulation and nothing to do with cancer at all. These types of cysts grow and reduce all the time and are a natural and fairly common part of reproduction. You will feel very confused but you're being looked after and your doctors are keeping a close eye on you. That's the main thing. Sending you lots of hugs. Love T xx

[Hidden]

Hi Weezy7,

I'm so sorry you have OC at such a young age, I know what a shock it is, how scared you must be and how confusing it is to try to take in all of the information you're given.

I would just echo all of the advice that has already been given on here. This is a really helpful and supportive group which I for one have found invaluable.

I would recommend finding out as much as you possibly can about your diagnosis and treatment plan. Never be afraid to ask questions and to ask for clarification of anything that you don't understand. Appointments are daunting and there is so little time to discuss everything, so writing questions down really helps as does having someone else with you to remember all the things you weren't able to take in.

I know you don't want to worry your family, but please don't go through this on your own.

Sending love & a very big hug, Libby xx

[EloiseyWeezy]

Wow thank you all for your support! It was lovely to come back and read all these replies! I have been putting all your advice together and going to put it into action. The last two days have been the worst for me and I feel as though it's getting too much. I haven't been getting a lot back from doctors and I don't feel I fully understand my own cancer, scary! I had fertility preserving surgery and am now on a soups and shakes plan because my body is rejecting food, other than that I have have no further treatment. I didn't get a number with my CA125 blood tests, all I know it I've had 3 so far and been told they are positive but it may just be my hormones and that it might not come back negative straight away. I will have to ask some more questions now I know the right things to ask. I feel a bit lost as it has all happened very quickly. I am going to put together a list of questions I have and speak to my MacMillan about it all. I'm going to call ovacome too!! I am also going to find a younger persons page to see if I can get a few more answers from that too Thanks again each and every one of you, I have read all your messages over and over! Means a lot to me. Love Eloise. X

[AnnieMae]

So sorry you find yourself in this position at such a young age but hopefully being diagnosed at an early stage will be in your favour. You will find a great deal of support on here so please ask any questions/air your fears/or just share your thoughts. Please keep us up to date with your progress.

Best wishes

Annette xxx

[Whippit]

Dear Eloise

I'm glad the support forum has been of some help for you. It is difficult enough to cope with a diagnosis of cancer but especially devastating for younger people. I think you've had good advice here, and I'm also aware of a cancer centre in Bristol called Penny Brohn that may be able to offer some help - pennybrohncancercare.org .

Penny Brohn ran a Living Well course for younger women with ovarian cancer earlier this year. I have a few friends who attended and they have all said it was tremendously helpful. They may well have something to offer you. Courses are free-of-charge and can be just a day, or two day residential courses.

The Ovacome Nurse-line is a lifeline. Ruth, the nurse, runs a group for younger women with ovarian cancer and I think it can be really helpful to be in touch with other women in a similar situation to yourself. She's a very wise lady and will be good to talk to in any event.

Keep in touch and keep posting as it does help to share thoughts. I guess your close friends and family are in shock too but don't be frightened to talk to them. It is all part of the process of acceptance, and from that comes resolution which is a better place to be.

with love xxx Annie

[Lily-Anne]

This is a lot to take in for someone of your age, I would definitely speak to MacMillan and also ask your consultant's secretary for contact with a specialist nurse, mine was amazing, I could email or call and she was always back to me with answers, when I was really stressed squeezed in an extra appointment with the oncologist.

I too was diagnosed with 1c which was contained in a cyst on my ovary. I had this removed, but as a precaution had a full hysterectomy which returned as negative. Being such an early stage is better news, it's never good news to have any diagnosis but at least you have the odds on your side.

LA

[wendydee]

Hi Eloise

Only just seen this thread, so welcome! So sorry you're having all this worry. It's such a lot to take in. Have a look on our parent charity website ovacome.org.uk, it may help you to understand what's going on. There are lots of Factsheets which explain things clearly under the 'resources' heading. The nurse helpline phone number will also give you info about support groups in your area.

Just to reassure you, a stage 1 diagnosis is good. I was diagnosed at that 11 years ago and am still well. I was a lot older though.....

Sending you a big cyberhug (((xxx)))

Love Wendy xx

[EloiseyWeezy]

Thank you again everyone for your replies! I have been doing my research with the correct sources now and definitely getting more secure answers. It is a very scary time and I'm still finding it very hard to accept and believe but am slowly getting there Taking things day by day. This website is truly amazing along with some others. Really has helped me a lot. A random question to you, a silly one but did/does anyone suffer with mood swings or suddenly feeling very low/angry? I'm a very upbeat and happy person but recently I can feel myself changing and not being able to stop that. Xx

[Catharine]

Hi Weezy7 Glad you are doing your research, and getting more secure answers - that will help you lots. The best thing to do is to take things day by day, as they change and that is normal. Know that ups and downs are all part of life's rich pattern. I have suffered mood swings off and on, alot of my life, and having been diagnosed with depression, I am permanantly on anti-depressants which help me to keep on an even keel. Everyone is different though and it is not surprising you are finding it difficult to come to terms with your diagnosis, as sudden as its been. Find a way of dealing with the anger without taking it out on those who love you. Do you have a job? That will help I'm sure to try and keep life as normal as possible. If not, concentrate on doing things you enjoy. I find painting very therapeutic myself. Dont forget to rest up when you can and not over tire yourself. Keep in touch with us all here .Sending a hug too xx

[MarieH23]

Thinking of you m x

[EloiseyWeezy]

Yes the correct research has definitely been a help! That's brilliant advice thank you, that's the last thing I wanted to do was take it out on people I love, but ended up building it all up inside then pushing people away so I'm now trying to judge how I feel and let my moods happen as they come, as well as actually talking about how I fell! I do have a job yes, which is definitely keeping me with a routine and takes my mind off things when it's getting too much! I love baking so am doing that a lot at the moment and definitely taking it easy, a week off work so feet up and movie day! Catharine I hope all is well with you and you're smiling everyday! Thanks again for all your advice, it's helped me beyond belief and I admire you all! It just shows how strong we can be even when life throws us a dodgy card! Xxx