Hoping to connect with Low grade serous Ov CA friends!

Hi all

About a Month ago I was diagnosed with stage 3c low grade serous ov ca. I am utterly devastated and cannot pull my head out of this fog. With four children at home I keep blaming myself for not ever visiting a doctor, missing signs, bad diet etc. The guilt is always there.

Am hoping to connect with other friends with similar diagnoses so that we can navigate this crap field together. Not sure how this forum works but everyone seems awesome so a little messaging support network would be incredible.

So sorry everyone is on this path. Wishing you all gentle thoughts and love

Maxine

15 Replies

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  • I was diagnosed last summer low grade 3a. Now ned and hopefully forever.

    I don't had any cancerous tumor anywhere. They found couple cancer cells.

    I believe that low grade is good cause longer remissions, even high grade stage 3-4 can have years without recur.

    All good for you 💓

  • Hi Maxine, I started off with borderline in 2012 which progressed to low grade in 2015. Please don't blame yourself as there is nothing you could have done to prevent this disease, you have just been unlucky. What treatment have you had ? I was originally debulked in 2012 and when I recurred in 2015 I had six sessions of carboplatin chemo (the Jury is still out on whether chemo is effective for low grade), since chemo I've been on letrazole which is a hormone blocker. A scan earlier this year showed a new nodule so I'm being monitored. In the meantime I lead a very normal busy life. I'm 51 and today it's been my day off so I took the dog out for a lovely long walk this morning, I've cleaned the house and I've done tons of gardening and I've literally just sat down after being on my feet since 6.30 this morning. I'm back to see my Oncologist next month to find out what's going on with I this pesky nodule, love Kerry x

  • Hi Kerry, may I ask how your recurrence was picked up as low grade? And what was your initial stages?

    I'm 4 months on from surgery to remove ovary, fallopian tube and omentum for borderline tumor, I had my tumor spilled in previous surgery too so feeling a little nervous to say the least.

    I have severe endometriosis too.... my recent scan picked up a nodule on my remaining ovary but she said it was endometriosis. I just feel I have to be extremely aware and informed at all times.

    Hope your appointment next month goes well x

  • Hi I was staged 3a when I was diagnosed with borderline and had surgery only. Eighteen months later my CA125 was creeping up so they did a laparoscopy and had a look around. Some tiny spots were seen so they took biopsies which confirmed that I had some low grade mixed in with borderline. Xx

  • Thank you for your reply.... had any if those tiny spots been seen on a scan? It sounds like they only found them due to laparoscopy?

    I don't know if my ca125 is a marker as it wasn't taken before the surgery I had to remove endometriosis. My tumor also wasn't spotted on any scans or in surgery, as it was just believed to all be cysts and endometriosis.

    I had a TVS last week and she said endometriosis nodule on ovary plus a 'bubble' of benign cells.... I wish I'd have asked her to repeat the name of this benign 'bubble' but you know what it's like when you're at appointments! I always have questions afterwards!

    I did a Google search but I cannot find anything that would be described as a benign bubble...?

    How are you doing yourself? X

  • Hi, no none of the spots were seen on the scan as they were so tiny like little nests my Consultant said. Do you have a CNS Nurse you can speak to as they are usually very good at answering the questions we always think of after appointments. I always take hubby with me to appointment as he's good at asking questions as I'm usually too busy absorbing what I've just been told to think of what to ask. I'm very well thanks, getting on with life and trying not to let this disease rule my life. Im back to se my Oncologist in three weeks but until then I plan to enjoy this lovely weather, Kerry x

  • I do have a CNS, and I've called her several times lol.

    I have an appointment with my endometriosis consultant this month so I'll just ask then. I did a search and she may have said 'follicular '.... but my period hasn't come either so I'll speak to my consultant at the appointment.

    Hope you're appointment goes well for you.... I'm still early on and haven't quite got the hang of getting the most out of my appointments! Exactly as you say really.... I'm listening as intently as possible when they're talking and my brain is only set to listening mode!

    Enjoy the sunshine x

  • Hi Maxine - I've been living with the same diagnosis as you since September 2014 - had full hysterectomy but no chemo. Am taking 20mg Tamoxifen daily - but horrible side effects with this drug :-( ........I have 6 monthly scans and check ups and am feeling generally well at the mo! What treatment/surgery have you had? Love Helen xxx

  • Hi Helen

    Treatment plans starts next week. Had the regular debunking surgery. My husband is pushing the chemo for the sake of the kids but I don't know. It's been three weeks since surgery and still can't get my bowels in order either.

    It's wonderful to have this group and to have the support.

  • I was diagnosed with low grade serous stage IV 6 years ago. I had the usual surgery followed by carboplatin since then I have had two further lines of chemotherapy and I am currently on a new drug trial for recuurent low grade serous.

    Please don't blame yourself this has nothing to do with diet it is just a random mutation. Its not inheritable

  • Hi Maxine - I'm high grade OC which I know is a slightly different ball game but just wanted to say how much I relate to the guilt feelings etc etc of this crap disease!

    I was diagnosed 3 years ago and used to beat myself up mentally every day! My family and good friends put so much input into me and everytime I had to go back into chemo I'd feel it was something I had or hadn't done and quite frankly felt pretty bloody useless! !

    But now I've finally come to realise this disease has chosen US not the other way round - if it was purely down to diet and lifestyle etc it would be headlines around the world!

    Please be easy on yourself lovely - you just need to give yourself some time to process this and roll with it I guess like we all do! This forum is a wonderful place to share ideas and experiences - even feelings that we don't want to burden our families with ( I've done that many times )!

    We're all here for each other 💕💕💕.

    Love Maz xxx

  • Hi Maxine I was diagnosed with low grade serous oc in July 2016. Despite visiting the doctor for four years with symptoms. So going to your doctors earlier may not have helped, so please don't beat yourself up. When I was diagnosed I was 3c. Over 50% are 3c before diagnosis.

    I've had chemo and interval debulking surgery and I'm now stable with no visible disease. I maintain on avastin and then will go on to letrozole.

    For positive reading and support, look up penny brohn. Also read all about oc on the canceractive website. You are not alone

    Jane

  • Hi I had same diagnosis as you five years ago and am currently on 3rd line chemo and had three and half years with no treatment. Do not blame your self you are definately not to blame. I don't know if you do Facebook but we have a group called ovarian cancer low graders united which is for ladies with low grade cancer. Sx

  • I'm also low grade stage 3c grade 1. I was diagnosed 2015 . I have been ned so far and hope to be for a long time . But me too I was saying what I did wrong to get cancer . But as we all know nothing we did it's just bad luck. Just think positive and hopefully the bad luck turns into a good 😊 one and we all will be fine and live our life's with no fear.. best of luck to you xoxo suela

  • Hi and welcome Maxine,

    We all blame ourselves - we must have done something wrong or we should have seen a doctor sooner (perhaps for symptoms we never had like myself) but finally I think most people accept that it's just bad luck. We are lucky to have low grade! I was diagnosed and had surgery in Feb.2014 so am over 3 years on - I am having 1st line chemo currently and other than just having lost my hair feel fine - few side affects except for having to medicate for potential constipation. There are lots of lovely low graders (and high graders) on this site who are so willing to offer help and advice - you are not alone!! Best wishes and good luck to you!

    Gwen xxx

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