LGSC 1c

Hi Everyone,

I am a 35 years old Hungarian girl living in Budapest and was diagnosed as Low grade serous carcinoma stage 1C on December 2016. My CA125 level was normal at time of diagnosis 18,7 but HE4 level was higher than normal 65 (normal is 0-60 premenopause). Therefore me and my doctor were very optimistic that its "just" a borderline tumor and one of my ovary can be saved.

Bad news after surgery, both ovaries were diagnosed as LGSC. I would have been staged as 1B but because of capsular rupture (my doctor was trying to save left ovary), I turned to 1C.

I just had a fresh relationship who we were already talking about having children within the next 1-2 years at time of diagnosis. Relationship is over due he really wanted his own children :( so instead of planning a family, here I am alone, on 6 cycles of taxol + carboplatin. I lost my mom last year, my only grandma a month ago and my dad is very ill as well. Thank God for friends, I don't know what would I do without them, they are my only support. Very lucky to have a lot of them :)

I get my last chemo soon. I handled first 5 chemo relatively well, I was working full time all the way through. My CA125 level was 10 before starting chemo, then 8, then 7 after the first 3 chemo, but now it stagnates at 7. Does it have to go even more down after each chemo? HE4 level also dropped to 30 after surgery, now its 23.

Any hopeful words for stage 1C LGSC patients? I know I have low CA125 level now, but it tricked me and my doctor too before. I also read somewhere that 80% of LGSC's are recur, but as I understood this statistic is for all stages...?

I find very hard sometimes to keep super positive, sometimes I panic at home alone. I know I shouldn't read "Google doctor" as I call it, but it is so hard to resist.

Thanks very much. Wish you all the best and health!

11 Replies

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  • Hello , I'm sorry that u are going through . I'm low grade as well stage 3c grade 1 . I was diagnosed 2015 and I'm cancer free and doing well . You are very lucky to get the cancer out at very low stage . Usually at this stage u are fine . I wish you the best of luck .

  • Thanks very much for your reply Shqiperia!

    That is great to hear that you are NED, I am so happy to hear that! Going to go through such thing we have to go through is extremely hard. I normally pray for God, and when I am in my positive mood, I say myself, I am lucky to be diagnosed at stage 1. But other days you think stage is not an insurance either, it happened and still changed our life.

    All the best and thanks again :)

  • Hi! I'm low grade, stage 3b. My CA 125 was only 60 at its highest, down to 13 at last check after surgery. 7 is a good number, a "normal " number if you will. It's true that there's a high likelihood of recurrence, but like any statistic it doesn't take all factors into account.

    I know its hard, but try not to dwell on the big scary what if. You were caught very early!

  • Hi Niki, I know there are ladies on here that have your grade & I am sure they will respond to your post.

    You might not be feeling lucky right now but the fact it has been found so early is a good thing. It's sounds as if you have a excellent team behind you. A lot of woman including myself had a higher grade when it was found. I am 3c & was only given 6 months to live. I have made 2 years & often cry & have panic attacks.

    I don't want to under mind your illness the fact you have cancer of any grade is a shock to your body. It's not only your body that needs to heal its your mind as well.

    I am sorry you don't have your family support but having lots of friends can help. Since having cancer I have seen the strength & love of my family & friends. Please take care love Cindyxx

  • Hello there ..

    I'm so sorry you've been diagnosed. It's horrid, as we all know here. The shock of finding out you have cancer is in itself very difficult to cope with. On top of that, you've had to endure treatment.

    As you're a young woman, you have, on top of everything else, other losses like the loss of your ability to have a family and then there's the loss of your mom and grandma. And then, you've had to deal with connected relationship difficulties. I think anyone would find these things together hard to bear.

    I'm glad you have good friends because having support is so important. I found that I lost some friends after diagnosis, but I gained some very unexpected ones along the way. You'll find the women here incredibly supportive.

    Ovacome has worked with other charities and younger women who have been diagnosed with Ovarian to produce a leaflet with information for younger women. Here's the link:

    healthunlocked.com/ovacome/...

    I'm sending many hugs to you in Hungary.

    Xxxx

  • I wanted to say hello and welcome to this great site, there are lots of friendly helpful ladies here ( and some men too!)

    You've been through a lot emotionally recently and I'm so glad you have good friends to support you.

    My CA125 never went below 13, each woman will have their own 'normal level' so try not to become focused on that!

    Very envious that you managed chemo so well, I get every side effect going unfortunately! A very bad time for me!

    Stay as positive as can and keep close to your friends too. thinking of your dad at this time.

    Take care

    Clare xx

  • Hi Niki

    In 2014 I was stage 1c, but at 43years old and with two children a very different scenario. I am sorry you have had so much trauma at one time. Cancer is devastating in so many ways. We all have physical and psychological scars. My cancer helped me to leave a terrible husband and focus on healing and doing what I want in my life. I am still cancer free and the happiest I have ever been. I hope you can say the same in three years time.

    Sending hugs and sincere best wishes as you come to the end of your treatment. I hope you can celebrate this with your good friends.

    X

    PS in my opinion a man that leaves you because he only wants a woman who can bear his children is not worth keeping. Sounds like a narcissist. You had a lucky escape

  • Hello. I can't add much info. I just wanted to get in touch to say sorry you've been going through this so young. I hope the treatment completely clears it up for you. You've had enough losses already. I'm glad you have friends around you. I don't known what I'd do without mine x

  • Hi

    From experience its luck of the draw. There are stage 4 ladies who haven't recurred and stage 1like myself who have. It's usual for stage 1 to be within normal CA125 levels sadly.

    It's seems you have a lot to cope with but are doing really well with chemo. Sending lots of positive vibes your way for an OC free future

    LA

  • Absolutely there is cause for hope!!

    As you've said, statistics such as you've mentioned will often combine stages as well as ages and other health issues. Your age, health, type and stage as well along with the treatments you have had all combine to give you the very best of chances. There aren't any guarantees sadly but you do have significant reasons to hope.... It takes a while though, when trust in our bodies, relationships and future plans have been turned upside down.

    You've been through so much and with such strength. I hope you are able to take some time to recover and find nurture.... very best wishes Sx

    (Dx 1c Sept 2012, mucinous grade 1. NED since full op & then 6xchemo)

  • Hi. I'm low grade but have stage 3b. I also have residual disease so have not been NED since diagnosis.

    Low grade is not as common as high grade and increasing evidence indicates that low grade and high grade cancer should be thought about differently.

    Certainly the statistics don't help because they put all OC together. The statistics for high grade are different to low grade. Low grade is a much slower growing cancer. Whilst I have advanced cancer and I still have tumours I feel relatively well and have done for the last 2 and a half years. If I'd been in the same position but with high grade then that story would be different I think.

    I have found that it's difficult for people to understand low grade. I've had to explain it to my family several times as they spent a few months thinking that I was free of disease. Similarly friends or people I meet have no idea that I have cancer because their expectations seem to be very fixed.

    However, that is different for you. Yours has been caught at an earlier stage and hopefully after treatment you'll be 'NED'.

    Bear in mind that the statistics include people who were first diagnosed with advanced cancer. This is thought to be partly due to OC being relatively symptom free in the early stages. Therefore, there's little chance of knowing to look for it until it's already become more advanced (certainly the case for me). In general it is thought that one of the best ways to have a good prognosis is to catch the cancer as early as possible. So by catching yours at stage 1 I'd like to think that you have one of the better chances for being NED and avoiding recurrence.

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