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Hi there, I'm new to this site so hi everyone. I was diagnosed with low grade serous ovarian cancer stage 3 in oct 2015 when I was 36. I had major surgery, ileostomy bag and 6 rounds of chemo and then a reversal last Aug. The docs were hoping for a cure but I have just recently been told that the cancer has returned and I have decided to take part in the LOGs trial. The doctor told me yesterday to start making plans. I feel really overwhelmed. Most days I feel really positive and happy but some days I feel very sad. I just wondered if anyone has any coping strategies? It would be lovely to hear from other ladies as I haven't really spoken to anyone in a similar situation before and feel like everyone around me, as lovely and supportive as they all are, they don't fully understand how I feel. Thanks in advance :)

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Hi lovely, I'm so sorry you've had such rotten news. I can't offer any advice but I just wanted to send lots of love and big virtual hugs. Keep strong ❤️Xx Jane

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Thank you for your lovely words xx

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Hi Rosie,

I'm roughly the same age as you, but I was diagnosed with high-grade OC at 38 (I'm 39 now). I've never asked my sell by date, and I don't think doctors can accurately predict anything (I assume that's what your doctor meant by 'making plans' - hope that was the right interpretation 😳).

I hope you get onto the trial and it works for you. There are a few low grade ladies on here so one of them might know more about the trial. Some have had luck with hormone blockers and avastin seems to have also helped - have you discussed other choices with your doctor?

Thinking of you x

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Thank you for your reply, it's nice to hear from people in a similar situ. I'm not going to ask for a sell by date either, was just a bit shocked by the 'plans' thing. My plans mainly involve going out dancing and socialising a lot while I can :) hope all is going well with you xx

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Hi Rosie,

I'm sorry you're in this place.

I too have low grade. I was diagnosed in March 2011, after emergency entry to hospital, at Stage 3c but it was later found in my lungs as 'scar tissue' which then reduced by half with chemo.

My cancer is/was widespread across my abdomen meaning that organs were stuck to the peritoneum and my bowel wasn't functioning.

I was told I had between several months and two years and that chemo was likely to be ineffective.

I had double agent carboplatin which brought a partial response but the CT post chemo showed renewed growth.

My oncologist, such as she is, said that they would wait for symptoms.

In September 2013, I was again admitted to hospital with a necrotic tumour and all seemed likely lost. I was told I had advanced, progressive disease and the surgeon said he was very sorry. It took months for the wound to heal.

I went to see my oncologist who said they wouldn't be giving me treatment and I was referred to the hospice for counselling, bowel and pain management.

I'm off pain medication and some of my old strength has returned.

This is a disease of cells and, biologically, doctors don't know everything.

When I was feeling poorly, which, admittedly, has been for most of the first years and beyond, there wasn't a waking hour when I didn't feel despair.

I too was told to make plans which I have done by an large.

I'm still here and some mornings, I find I've thought of other things rather than the cancer. I'm thankful for that.

Whenever I have bad thoughts, I purposely try to keep them down and think of things I'm grateful for.

I try to think of difficulties other people have and feel for them rather than dwell on myself.

I also try to spend time with animals which I find fills me with peace.

Im not trying to make my story, your story but I do hope your trial goes well.

Love

Sue xxx

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Hi Rosie, the doctors are so insensitive to their patients at times. I found even if you don't ask for the finer details they seem to want to tell you.

No one knows how long you have or anyone else has. They look at charts & percentages not real people like you & me. A lots of the stuff they are using to make their judgments are out of date.

I was given 6 mouths with chemo but I have made over 2 years & I am still here. They have said some really negative things to me then the next time its quite positive I think they a fickled at times.

I feel I am not only fighting oc but I am also fighting the so call professionals. My daughter in law & I go in to the meetings full if questions but come out with very few answers.

Never stop asking questions, never think they know how long you have & never stop fighting.

As for ways to cope with the sad times I call my daughter in law, make arrangements to do something. It's not easy sometimes it feels impossible having this on your mind all the time. I am not going to tell you to be positive because it's just a word. Try to stay as busy as you can & try to be around love ones as much as possible. Please keep us up dated on the trial take care Cindyxx

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I think you should perhaps find a Macmillan Centre near you and talk out your fears. I hope you get on the trial and that you won't feel as bleak as you do right now. Sending yo a gentle hug

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First of all, can you tell me what low grade serous ovarian cancer is? I've never heard that term.

Then, I'm sorry about the not so good news. You've been through a lot already, but I guess you will need to dig deep to find the strength you don't even know you have.

I also have an ileostomy that was not reversed. There had been a spot of cancer on the outside of the small intestine (which is all I have!), but nothing inside, thank goodness.

The best advice? Keep posting your feelings & fears here, & look for encouragement. Hoping for a good, positive outcome for you.

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Hi I was diagnosed 3b triple neg with not much hope for remission as it had spread to the lymph nodes and my left lung. I was also told to make plans. Like you I was devastated. My doc said doing a mastectomy wouldn't help nor would removing the nodes as it had already progressed to far. I guess that's why I'm still here 11 yrs later. I wouldn't give up. I did cry a lot. But somehow you can find strength you never thought you had. I was determined to prove everyone wrong and I did. The thing is don't give up and just keep fighting. I know it's a lot for you but all of us on here will listen and we do understand. Xoxo Love

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Hi Rosie,welcome to this site seems the wrong thing to say.But I know sharing how you feel will help.I don t feel 'qualified' to give advice to you other than to say take it day at a time,the whole picture can be too much to take in.Much love sent to you,

Sharon. X

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Hi I have low grade serous ovarian cancer. It's good news if you are eligible for LOGS. The first MEK inhibitor trial helped 15% of people and kept 65% stable. I like the odds. And if you don't get the active arm, it seems like you haven't tried some other treatment. For people like us the treatment with most data is the hormone blocker has kept people alive and stable for years. Who knows how you body will react.

Also your surgeon seems to say that you are inoperable. That maybe true but get a second opinion. If you message me I can tell you the medical oncologist who is the uks LGSOC specialist, he also is leading LOGS - that if you don't know him. He and his team are thorough, and have the best idea of what could help you. I know cos I saw him yesterday and I thought I was inoperable, I still might but they think I could be, and I will have a laparoscopy to check. And if not, he will suggest what drugs could support you most.

My second idea is to give you a name of a top surgeon in London, who does secondary debulking and will say if operating will help. They will tell you straight as they won't do it if they can't get it all.

Also, if it hasn't been profiled, can't the tissue from your op profiled. It may throw up a mutation that guides cherry picking other clinical trials.

Otherwise, I also have the hopelessness feelings. You are not alone. The ladies on here give me comfort and strength. They balance the awful news we receive with hope by they survival and spirit, and kindness. It's very hard to explore options that I have suggested when you are devastated and facing a limited life but do. It could lead to something that keeps you well for longer. That's what I'm telling myself. You have done the right thing by posting on here. Also there are people on the trial who are doing well.

Take care

Jane x

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Hi Rosie,

Well - these beautiful ladies and their success stories certainly prove to me that doctors do not have the answers that we have always been led to believe they do! I urge you to read them and read them again and draw strength from them. I've realised that cancer is just a collection of your own cells that have gone a bit haywire. Your body wants to make you well and I have put my faith in myself.

I decided not to continue with conventional treatment after two sessions of combined chemo because of the toxicity and was told I would only have a matter of a few months without it. I deliberately arranged an onc appointment after this date and was gratified to hear the words 'just keep doing what you are doing, it's working!'

As others have said, everyone is unique and doctors can only advise on general terms regarding health.

Believe in yourself lovely lady and you will find the strength you need to help you through this challenging time I'm sure!

Hugs, Deb x

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Hi Deb, I have read your pass post that you were trying vitamin C infusions & going over to a 90% vegan diet. My question is are you still doing this & if the answer is yes do you feel that's what's keeping you well?

I have tried every kind of diet going but can't keep the cancer a way very long. I have heard of vitamin C infusion but when I suggested this to my onc they say nothing will work except chemo.

I found your story very up lifting it gives us hope that unconventional treatments can work for some. I am keeping my hopes up with a drug I might be given after my third line chemo. If that doesn't work I then could look at treatments like you have done. Thank you for you input take care Cindyxx

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Hi Cindy

It's great to hear that you are encouraged by my methods - I looked at other possibilities of recovery when I just felt enough was enough with chemo. I wanted to find a way to help my body heal itself rather than fight the toxic environment of chemotherapy drugs. Believe me though it is not an easy path to follow. I've had 10 Vitamin C treatments which I believe have helped, although at present you can only get this privately from just a few clinics in the UK. My closest one was near Winchester and I'm in West Sussex! Expensive too. I did suffer with a low red blood cell count which probably didn't help too much as these cells carry oxygen around the body which the vit c needs to work well. I had to delay some treatment because of this. Vit c is getting some good press at the moment which I do believe is justified but I would hesitate to recommend it alone as a remedy. I think it has been shown to reduce side effects of chemo when used along with that.

I'm trying hard to keep up my plant based diet - again this helps to keep your body alkaline which is understood from research to slow down cancer cell growth.

I'm on a very intriguing and quite intense journey and as I see it all the holistic options out there, along with guided meditations, aim to support our bodies in our quest to be well and for me that is the way to go. No guarantees but hey it's not toxic!

It is a rocky path Cindy there's no denying it and there are many times when I feel like c@@p but whenever I question if I'm doing the right thing something in my gut tells me a resounding YES!

Hope that helps and I've noticed how much you support everyone on this forum. You have a kind soul and I wish you good health to go with it!Deb x

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Hi Debs, Thank you for such a lovely reply. It was only when I read the last paragraph that it bought tears to my eyes.

I find if I am on here answering concerns or asking questions because it takes my mind off of my own cancer. I also feel so close to everyone on here like they are my extended family.

I am impressed how well you have done. I have tried only eating alkaline foods having a large smoothie with only organic fruits & vegetables. I felt quite unwell on it but carried on till my next ca 125 had gone sky high. It made me doubt myself.

I had my 32nd chemo last week & hoping to get a break soon. I am going to look into the things you are doing & see if I can bring them into my lifestyle. Thanks again take care love Cindyxx

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Thank you everyone for all your positive and encouraging words, you have all made me feel much better. I am ok most of the time, just have the odd wobble. I will continue to post on here and let you all know how I get on. Lots of love and hugs to you all xxx

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Hi Rosie. First of all welcome to the club none of us would join in a million years! Although my experience of OC was many years ago now, I remember only too well the grim faces and grimmer words from the medics. Sometimes just a word or phrase ( innocently made, usually) would send me into major panic mode about my future. Everyone is different, but for me as the days progressed and I was still here each night I would try to relish the next without worrying too but it is hard I know. Something happened while I was recovering which made me really think about the fragility of all our lives (while I was recovering was the Lockerbie disaster - I know , I know this was a long time ago!) But I suddenly realized those poor people on that plane probably had no thoughts of their mortality on that day and yet here I still was - albeit nursing my wounds on the sofa! Yet here I was consumed by my own mortality. I want to wish you well and hope all goes well. Enjoy the dancing. I love it too. Much love Catherine.

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Hi Rosie, I was diagnosed stage 3C over four years ago and I'm much older than you. You have a good chance. Being younger is a bonus in this game. Keep your spirits up and keep in touch as you'll be given good advice from experts, those in the same place as you.

All the very best, Zena x

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Hi RosieDott

I'm a fellow low grader diagnosed at age 39. I had surgery and am stage 3b. I had said no to a stoma in my consent form so the surgeon was not able to get all of my tumours (I have a tumour sitting on my rectum and a couple of others hiding under my liver). When I found out it was low grade I was given the option of chemo, radiotherapy or watch and wait. I went for watch and wait.

The oncologist said she thought I'd have a couple of years and she was expecting my symptoms to restart probably within one year. The plan was that I would have chemo when symptoms restarted. That was over 30 months ago and I'm currently still on watch and wait.

Whilst the phrase 'start making plans' was never used various other comments were made that implied that I should get my affairs in order. I spent the first year refusing to agree to do anything that was longer than one month away. When my partner and I decided to marry up a ski slope in Canada we had three weeks to arrange it all as I didn't want to tempt fate by leaving it too long. I've got to say there are many advantages to arranging a wedding in 3 weeks. I was told by the florist in Canada that I was the 'easiest bride she had ever met'. I showed her the colour of my hat and said "match the colours to this and I'll pick up the bouquet in the morning". Our witnesses were some people we found walking along the bottom of the ski slope who were waiting for their friends. And our post wedding celebration was an impromptu party in the communal hot tub when we arrived there with a bottle of champagne and found some other people there with a crate of lager. It was all fantastic and a year's worth of planning wouldn't have made it any better than it was.

I suppose my point there is that I've had to change my whole mindset. I'd always been a planner and spent a lot of time trying to make sure everything would be great for the future. Probably at the expense of what was happening now and today. So that wedding really showed me how to live for today rather than worrying about tomorrow.

Your question about coping. Well I think if you find that most days you are positive but some days you feel sad then you are coping. It would be very unusual to be able to be positive every day, with or without cancer. There are so many things that happen in life that knock us. I think it's very natural to have days when you feel sad. I think on those days you've just got to allow yourself the time to be sad and let it pass. It's probably how you are able to feel happy on the other days. What you have to watch out for is those sad days becoming more regular than the happy days.

X

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Hi Rosie

I am also low grade serous was diagnosed 3c in Dec 2011. I was 41 at the time. I had a full hysterectomy and carb taxol chemotherapy. It came back in 9 months and had carbo gem 6 cycles. I got some shrinkage. At the time I did not know I was low grade. I was told I would have to probably have chemo every year. I then went for a second opinion and found out I was low grade and hormone receptive. I then moved hospital and had three and a half years on watch and wait. I was put forward for the logs trial but unfortunately was not suitable. I have not got a bit that's growing faster so have started chemo in march. I've now had five half years with disease and still manage to live a reasonably good live . I can't do what I used to but I gave up work do some voluntary work at citizen advice which I love and would never have done if I had not got cancer. I have also met some incredible ladies who have become friends and I get great support from them. We have a group on Facebook called ovarian cancer low grade united, for ladies with low grade and some are on the logs trial. Sx

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