I'm new here

Hey everyone

First of all can I say a massive thank you to you all, I have been reading all your posts for the past couple of weeks and always turn to the forum when the panic sets in....I was admitted to hospital February 27th because of the intense pain I was in, they already thought they were dealing with Ovarian cancer, as the initial CA125 was high and the ultrasound showed a mass, but as the tumour had twisted and embedded in the wall the pain was incredible so instead of all the regular scans and tests they operated first , three weeks later the dreaded news , counting myself lucky that I am 1c but not quite sure of the grade, I have had another scan post op and nothing is showing , and my ca125 is now 20 and was 207......meeting the MDT crew soon to discuss further management , guess its chemo as its 1c but feeling strong will do as they tell me....Just had a week away with the family and some days it felt really normal and I would forget this had all happened .....feel like I know you guys already as I have been following you so thought I would now introduce myself

Lisa xxxxx

12 Replies

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  • Hi Lisa, its nice to "meet" you though sorry you find yourself in our boat! Its all horribly scary in the beginning isn't it, it seemed to consume my every thought, I was a wreck! I had a swelling in my abdomen last June, was fast tracked, CA125 was 13! Had scans and behind my massive cyst was a tumour, so straight in for hysterectomy. I too am 1c2 (high grade serous) because the cyst ruptured literally minutes before surgery. Was advised to have 6 cycles of chemo, carboplatin, it really wasn't too bad for me, just made me feel tired from the 3rd cycle. Ended chemo in Jan, had scan in Feb and all clear! So now on a 3 monthly review. Please don't google, don't listen to stats, on here you will read of our ups and downs.........just remember we are all individual no two journeys will be the same. I am trying to learn from my husband, I am not as patient or tolerant as he is, he was diagnosed in 2008 with advanced bowel cancer...........he is now in his 6th year of remission! Keep busy, and treat yourself when you have a bad day..........it helps! Keep us posted. Anne xx

  • Hey Lisa and welcome!

    I too was 1C and high grade! I was diagnosed in 2015 finished Chemo in March 2016 so a year ago now! All good so far feel great and have a much changed attitude to life in a positive way! The Chemo was tough but doable so don't be too anxious about the prospect of Chemo if your MDT do advise it, they may not ( it is usually advised if the cells are high grade from other ladies on here and that's what my onc told me too)

    This forum was and is a real lifeline for me! The ladies on here have become friends though I have only met a few of them! It is a very safe and secure place to ask and offer advice so keep in touch!

    You are on a journey that will take you many places good and bad so take a deep breath, surround yourself with those you love and trust that you will come out the other side stronger and healthier!

    All the very best to you!

    Dx

  • Hi Lisa,

    Post op CA125 usually goes up and you've hopefully been told that!

    It always amazes me the different ways our cancer shows up too.

    Everyone here is very caring and generally reads everything too.

    A few days away with family sounds great and I hope you DID manage to have as good a time as possible.

    Chemo will depend on grade of the cancer I expect. Write all your questions down for your meeting with the doctor or oncologist, you'll be amazed at what you forget to ask!

    Have a good Easter,

    Clare

  • Hi Lisa, welcome to the sisterhood. So sorry you need to join us but you're in the best possible place here for support. You're on a scary road at the moment but you can get to the end of it with the help of the health professionals and your own strength and the support of your family and friends.

    I too was grade 1c, I was diagnosed as clear cell. I had to have surgery prior to any other treatment as I had a huge rapidly growing 30cm cyst around the cancer that had to be removed and it ruptured during surgery. I then had the carboplatin every 3 weeks and paclitaxol weekly, the chemo was not a barrel of laughs but it is something we can and do do and worth it long term. This was over 2 years ago and fingers crossed this will continue.

    Keep positive if you can, it really does help, don't go looking on google for stats you'll only scare yourself unnecessarily with information that is so very out of date and in lots of cases bogus. Good luck with the MDT meeting, they will do their very best for you, write down any questions you may have, they really don't mind answering them and you need to have the best information so you know what you're dealing with.

    Sending big hugs and lots of love, let us know how you are getting along and don't be afraid to ask any questions, at least one of us will be able to answer it because we've all done it and got the teashirts. ❤️Xx Jane

  • Thankyou so much , the support on here is so comforting, I feel like I'm in a big bubble and everything is so surreal!! Find myself comforting others as in friends and family a lot, convincing them I'm fine when I don't actually know how I feel!! The kids have been brilliant thou , they are 23 and 20 and Hubby is my rock .....yes I'll keep the updates coming, big hugs back xxx

  • I did just the same being upbeat with others and offering them support and people didn't realise just how poorly I was (I had other issues as well as the OC) and it's actually been said to me that I don't understand how poorly a distant relative has been after her hysterectom (no OC involved) because she's so much more ill than I ever was 😬, so, I would say it doesn't hurt to let people know you're not actually really OK all the time, you really don't need to support others while you do this, you have enough to deal with. Your immediate family are fantastic, mine were too just be there for them, let others support them while they support you. ❤️Xx Jane

  • Hello. Good to hear from you and to hear that your treatment has left nothing visible on the scan. I hope whatever they plan for you goes well x

  • Hi Lisa

    You have been through a really rough time but from your post I gather that you have now turned the corner and hopefully all will just get better and better from now on. If you have to have chemo it's very tolerable for most women and you will get lots of tips on this forum . The best news of all is being diagnosed at an early stage as many women are at stage 3 or 4 before being discovered . That does not take from the fact that you had to face the dreaded word Cancer and all that pain but let it give you hope for the future that you can put it all behind you. Take care

    XXX

  • Hi Lisa- Glad you found us. We are a bunch of experienced and caring ladies. You will find that one of us has experienced whatever you are dealing with. Don't be afraid of asking questions of any nature as it will help with forming questions you can ask your team at appointments. You are fortunate you were caught early. Please keep us posted on your progress.

    Hugs, Carol

  • Hi Lisa,

    Welcome. You will find a wealth of experience from the ladies who post here. I was diagnosed post op in October Stage 1C but ungraded. CA125 was only 26 pre op and 16 post op before chemo. After six cycles it has only dropped to 15 which I was disappointed with, although chemo team are not concerned. The first few weeks are the hardest coming to terms with the diagnosis and treatment. I was like everyone else very scared of chemo, but you can and will cope. I have just finished 6 cycles of carbo/taxol and although have experienced some of the side effects, it was doable. You will find which days are worse for you and then look forward to the good days before the next cycle. I am seeing my onc for first review at the beginning of May, no scans or bloods that I know of, but will see my GP for a CA125 prior to my appointment. Although I don't post very much, I have found the ladies who do very knowledgeable and have the answers to any nagging doubts and worries without having to ask.

    Good luck with your treatment.

    Claire xx

  • thankyou xxx all the comments are so comforting !!

  • Hello Lisa, that's the best way I found, forgetting what's happened and feeling normal. Except for the odd moments of course. It's good you had a week away with your family, breaks away Fromm normal routine can be so invigorating.

    Hopefully you won't have too long to wait to find out your plan and if it is to be chemo, the ladies on here will be able to offer a lot of good advice.

    All the best!

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