Ovarian cancer in my twenties: Hi everyone... - My Ovacome

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Ovarian cancer in my twenties

26yearoldLizzie profile image
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Hi everyone, lovely to see what a big community this is. I was wondering if there is anyone else with ovarian cancer in their twenties? I'd love to hear from you. I was diagnosed last week, and currently 12 hrs post surgery.

I look forward to the replies.

Lizzie 🌻

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26yearoldLizzie
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Hi Lizzie

Yes this is a lovely site, you will find all the encouragement and advice from our ladies.

I can.t help you in the fact that I'm no young but there are young people fighting on this journey who will reply to your post.

The clinic I go to has a beautiful young girl and she is doing very well, she told me that it looks like she has had her last chemo, and was told that her age was on her side.

I hope this is the same for you .

I send you all my best wishes and please keep on this site with any question you need answered or just to have a chat .

Lorraine xx

Welcome and wishing you all the very best....

I'm sure some of our younger members will be in touch before too long. xxx

SarahsJourney profile image
SarahsJourney

Lizzie, I myself am early 50's but I chat to a girl who first approached me via my Facebook page & then Instagram who is only 27. She had the debulking surgery at the end of last year & is currently on a programme of chemo. Sadly the cold cap didn't work for her, & she got her Dad to shave her hair off last week.

I think she is incredibly brave in her approach and am sure she'd welcome hearing from someone her own age. As far as I'm aware she's not on the forum but her Instagram name is: 50shades_of_faye

Best wishes

Sarah xxx

26yearoldLizzie profile image
26yearoldLizzie in reply to SarahsJourney

Morning Sarah,

Thank you yes I've been in touch with her on Instagram! Very brave woman. I also follow your Instagram and sent you a message earlier this week on there. I would welcome a reply as I'm keen to hear your experience of the cold cap etc.

Thank you again,

Lizzie

SarahsJourney profile image
SarahsJourney in reply to 26yearoldLizzie

Lizzie sorry didn't realise! Good job you said, have just checked & because I'm not currently following you it didn't flag it up. Will respond now xxx

Hairlessbeauty profile image
Hairlessbeauty in reply to 26yearoldLizzie

Hi Lizzy,

I wish you all the best with cold cup. I know it's working for many ladies. Personally Idea of loosing my hear was terrifying. But at the end it wasn't that bad. I'm not loosing my hair now, on the second line chemo and actually I wouldn't mind at all. Now I'm experiencing much worse side effects that loosing my hair πŸ™πŸ˜‰.

Anyway, when I was looking for head cover in 2015 I couldn't find entering what I liked. Then I got idea of setting online shop with hats and scarves. 6 months after my treatment I opened online shop. Actually this month I celebrated 1st anniversary of running this website.

Have a look please, maybe I can help you πŸ˜‰. There is My story as well, and the blog.

hairlessbeauty.ie

Greeningthegrey profile image
Greeningthegrey

Welcome

I hope you make a speedy recovery.

I believe Ovacome and Target have advice for younger women.

I thought I was young at 40 ha!

Don't rush the internal healing process takes longer than the external. Also the psychological effects can be rough but you have found a community here so don't hesitate to rant or seek support

Sending hugs and best wishes

Esther

Hi Lizzie,

Just would like to add to my first post, you will get advice from some lovely ladies but remember always talk it over with your oncologist team before trying anything.

Cheers Lorraine xx

Bettyru profile image
Bettyru

Hi Lizzie I was diganosied about 2 montha after my 29th birthday. Fortunately moat of mine was borderline though I did have a small amount of early cancer in my left ovary i did not need any chemo but I did have a full hysterectomy. I was diagnosed 3 weeks after my surgery.

Ruth xx

Mrs_Atko profile image
Mrs_Atko

Hi Lizzie - I was diagnosed last year at 33 and was lucky I never needed chemo due to the tumour being borderline mucinous (stage 1a).

Had fertility saving surgery rather than completion and now on a 2-year monitoring programme. You're in good hands here but as others have said always talk through your treatment and thoughts with your medical team too. I'm glad you've found us. Welcome. And I wish you well with your journey.

Jemima xx

Ashland1111 profile image
Ashland1111 in reply to Mrs_Atko

Hi, Mrs_Atko! I too was diagnosed with borderline ovarian cancer. Mucinous Stage 1a back 5 years ago when I was 23 years old. I have a small basketball size cyst on my left ovary. I unfortunately lost that ovary, and tube, but thankful that the other hadn't been fine! Blessing me with the daughter I now have today! Anyway I know this post was months ago, but I am on my final scan! It was every 3 months then every 6 for five years until I got the all clear.

All scans and tests have been coming back great and just today I received the call that my CA125 again had come back clean and normal! Just waiting on my last CT scan to be cleared! Anyway I was wondering if you've ever been cleared with the Ca125 and had a bad Ct scan result.

Trying to lessen my worries.lol also very hard for me to find anyone with the same diagnosis as me so I'm so glad I came across your comment.

Would love to chat more if you're interested!

Thanks!

Mrs_Atko profile image
Mrs_Atko in reply to Ashland1111

Hi Ashland...I'm happy to hear you've been clear all this time and been blessed with a daughter πŸ™πŸ» congratulations! CA125 was never a good indicator for me (it generally isn't for mucinous) so I don't have them. Just ultrasound scans every 6 months. It's always a stressful time waiting for results and I'm sure this last lot for you will be just fine. I'm always really nosey when I'm actually having mine so if there's anything remotely not normal, I find out there and then. Just had my 12 month scan a few weeks ago and all was clear πŸŽ‰ so that's me for another 6 months! X

Firstly I'm not 20 but wanted to wish you all the very best. This site as others have said is a fantastic source of experience and support. Big hugs,

Lisa x

Leianne7 profile image
Leianne7

Hi Lizzie I was diagnosed last year when I was 29. I had 2 surgeries and then 6 cycles of chemo which I have just finished. I also used the cold cap but it didn't work so I ended up shaving it all off. I was diagnosed with stage 4c mucinous oc. If you need to chat or anything just give me a message. It is hard going through this being young but you will get there and there are a lot of people on this site that are there with you. I'm also on instagram my name is leisfiestast07

Leianne xx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hello Lizzie

I'm sure you find a lot of support and good advice from the members of the forum. I wanted to ask if you would like a copy of A Younger Woman's Guide to Ovarian Cancer? It's produced jointly between Ovacome, Target Ovarian Cancer, Ovarian Cancer Action and the Eve Appeal and has a lot of information for women who are diagnosed at a younger age.

If you would like me to post you a copy or email you a PDF, please private message me or call 0800 008 7054 to let me know your contact details.

Best wishes

Anna

Support Service Manager

Hairlessbeauty profile image
Hairlessbeauty

Hi,

Welcome in our great community. You will find lots of help, encourage and friends. We are all here to listen, give advise and share our worries.

Im quite young as well, I'll be 39 next month, diagnosed 2 years ago. But I'm sure you'll find younger girls as well. It's must very difficult for you, I'm really sorry that you had to face this horrible disease. But we are heat to help and share your worries.

Lots of hugs

Zaneta xx

Hairlessbeauty profile image
Hairlessbeauty

Hi Eileen,

Could I also ask for that manual please. I'm 39 next month, on second line chemo. Diagnosed in 2015, stage III c, clear for 12 months.

Thank you,

Zaneta

thomas62 profile image
thomas62

Could I also ask for a copy of your manual Emilee. I will e-mail you.

Thanks so much.

Gwen

HogwartsDK profile image
HogwartsDK

Hey Lizzie,

Lots of good advice already! I was 45 when diagnosed not as young as you but younger than normal for OC! I was stage 1 had surgery and chemotherapy, nearly a year finished chemo now and doing great thankfully!! It was a hard journey but doable! You are at the very anxious stage now just after surgery it does get better as you work your way through the process.

This forum has been a life saver for me so keep in touch!

All the best!

Dx

Spencer2016 profile image
Spencer2016

Hi Lizzie. Welcome to this forum, the women here are wonderfully wise, kind and comforting. They will lift you up when times get hard, give you a gentle kick in the butt when you should take some action, but mostly they will share. Their hearts, their experiences, their prayers and advice and most of all lots of love and kindness.

I am more than twice your young age being 45. It must be scary being so young. But age is on your side. My best advice is to not overdo it, be gentle to your body and don't google too much.

Come back here with questions any time. You now have a very large support system at your disposal my dear. It has helped me too many times to count.

🌸🌺🌼 Anne

Yoshbosh profile image
Yoshbosh

Hi Lizzie,

I was diagnosed when I was 38, but a friend of mine was diagnosed at 18 with literally weeks to live - she's 36 now and absolutely living life to the fullest! Us OCers are tough as old boots πŸ˜‰

The Younger Women's Guide that Anna mentions above, is really good - compared to the other stuff I was given, that was the only thing that really resonated with me. It has sound bites from other young women about their treatment which helps too.

I hope you are getting plenty of rest after your surgery.

Yosh x

Carolelynn profile image
Carolelynn

You're too young for this to have happened to you. I'm so sorry. I do have a friend that as diagnosed at 40 and had chemo with a girl that is 27.

I was in my early 40 when diagnosed but during my treatment I helped produce the younger women's guide to ovarian cancer. More info can be found at ovacome.org.uk/support/supp...

I

Emmajayne1 profile image
Emmajayne1

Hi I was 27 when I had oc x

Emmajayne1 profile image
Emmajayne1 in reply to Emmajayne1

I should add I was very lucky was found at stage 1a had sparing surgery as I want children no chemo and I need a hysterectomy with in the next couple of years they have told me so I have 3-6 months check ups now for the past 2 years so far so good x

VickyEm profile image
VickyEm

Hi Lizzie

What a shock for this to happen to you at such a young age.

I was 29 at diagnosis of stage 3a serous ovarian cancer. I had a hysterectomy and both ovaries removed, but already had children, so did not face any of the fertility issues.

The good news is this was 17 years ago and I'm still here. I'm not cured as I have had a number of recurrences, but my cancer is slow growing, so this is of some comfort to me. If you want to know more I have a full history on my profile πŸ˜ƒ

If you have had your ovaries removed, the only advice I would give is to look after your bones, as I now have osteoporosis.

Take care

Vx

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