My Ovacome
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So Mixed Up

This is my first post on here and I'm hoping some of you lovely ladies can help me please. I was diagnosed with stage 3 ov just before Christmas and have been on chemo since January. I have just 3 weeks left of chemo and my treatment is going really well with my consultant saying that it couldn't be going better. However, I saw him for one of my regular check ups on Friday, and he said he's going to schedule me for a scan once my chemo is finished but he doesn't expect to find anything and i'll be in remission. Of course this is great news but he followed this by " but the cancer will come back and we generally treat patients with several treatments over several years".

I know this is probably true but I just can't handle thinking about it.

Well I left his office and just burst into tears. I know I should be happy that I'm coming to the end of treatment and have beaten this (God willing) but I don't know how to deal with the thought that it will return. Not only that but where will it return to? What kind of cancer will I get next time and will it be treatable? I just feel so sick and weepy to even think about it.

So i'm looking for some advise please to help me keep my positive head on so that when I am in remission, I live my life, and not just sit thinking well what's the point because it's going to come back anyway and i'm going to die soon because of it. How do you get back to living a normal life, without cancer being the first thing you think about in the morning and last thing at night as you fall asleep?

Thank you for reading

K xx

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Hello K,

I SO understand! There are lots of sites you can go to that explain things but I personally found them daunting and didn't love what I read. There are percentages about these things so everything you hear--or what your doctor says--is based on these percentages and what general history on the topic shows. Do not quote me but chances of return are very possible and to remain SANE, I think you need to take it one day at a time and know that most people go on to the next treatment if it does come back. I am at MSK (Memorial Sloan Kettering in NYC) and my oncologist told me that it is treated more like an incurable disease (like Type I diabetes) than it used to be. So they continue to try new things or different things if you are one of the people who has a relapse. In the meantime, you need to try to really focus on enjoying each day and figuring out how to lower your anxiety. MSK suggested I try a mindful meditation class which they said would help reduce anxiety and would control it if thoughts popped into my head that I don't want in my head. And the more you talk to people, the more you hear stories about people who did not get it again, or had one relapse then no more, or it was years and years before the relapse. You just never know. As one of my friends who is a psychotherapist said to me--we are all going to die--its just that we have faced the thought of dying more than others without OC. So we need to use that in a positive way by making our lives what we want them to be and appreciating all we can. And knowing that worrying all the time is not the quality of life you want. Take it one day at a time and know there are new and better treatments all the time and you will be able to take advantage of those IF it does come back.

MaxJor

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Hear hear !!! What a wonderful spot on post ! I'm also stage 3c , finished treatment in January, NED at present!... have wobbly days. But overall it does get easier to accept.. my own GP said that of all cancers it's a good one to get !!! Based on the fact that there are so many treatments!

Many thanks for the original question , and wonderful response!

Jackie xx

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Hi K, I am so sorry your consultant upset you. It all sound really good till he said it will come back. He hasn't got a magic glob, he has no right to say this. I know woman on here that have got into remission & many years later still are.

I was told I wasn't going to live longer than 6 mouths with chemo. I have made 2 years 2 mouths. Please don't take everything your consultant has said to heart. I am sure he is good at what he does but no one knows what will happen to you in the long term.

Its not one fits all!!! We are all so different & yes some will have a recurrence but there will be others that won't. You might never have it back again he should be on the more positive side. If it does come back there are lots of treatments on offer & it doesn't have to be a death sentences.

Getting back to normal after cancer won't be easy. It will be very slow but you will do it. Good luck you are doing so well it might be an idea to have some counselling so you can adjust to the new you. Please keep us up dated we are all here to help each other. Take care Cindyxx

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Hi Kouyate,

I have to agree with everything Maxjor has said to you.

I am coming to the end of my first line chemo treatment and I am having the same thoughts as you. In the UK, Maggies Trust have a "What next" program to help people with that feeling of panic/depression when they are suddenly on their own, without support from all the lovely oncology team. That's not a strictly true statement because we can always call the team for a chat but generally there is the feeling of being cut free and on our own, no doubt worrying about every little cough, twinge, lump or bump.

I've decided that there is always the possibility that it may come back and if it does, I will deal with it again. So far I've survived 100% of my worst days and that's a good track record. I honestly look at it like a chronic illness just like diabetes, it may need managing for the rest of my life. I'm choosing not to waste even 1hr being unhappy or worried because that's a waste of precious time. I'm living in the moment, enjoying every minute of everyday. Non of us know when we will die or what will be the cause, we only have now, today! Try not to worry about the future, you cannot predict what will happen.

If possible, try to get some Counselling to help you move on and learn to enjoy life once again. Try to do the activities you did before your diagnosis, it makes us feel 'normal' again. Be around people who make you laugh. Do anything you find uplifting. Little by little you will feel you are getting control of your life again and when the shocking thoughts of "what if" pop into your head, just give them an acknowledgment and a wink and say to yourself "I'll deal with it IF and WHEN!"

Sending courage and big hugs to you. JJ xx

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Dealing with living your new life is as challenging as the original diagnosis. You just have to take it a step at a time - there will be ups and downs. For me, just getting back to normal activities and things I enjoy and which divert my attention is the key thing. It takes persistence and hard work and you mustn't be discouraged by days you are frightened, because they pass and before long you're laughing again. I recommend the course 'Living with the impact of cancer' by the charity Penny Brohn UK in Bristol, which gives you tips on reclaiming your life and staying in control. I found it inspirational.

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Hi K. OC in considered a chronic illness. I remember going for a scan mid way through my chemo and my nurse saying ' it will come back and it will shorten your life' . I, like you was devastated. However, despite 2 recurrences Im currently in my tenth year ( I like you am stage 3). Im currently now 46 months in remission this time round, working full time and living life. You will find your own 'normal', life goes on. Eventually as the days pass you'll find you'll go longer and longer before the thought of cancer rears its head. Have you considered Counselling, it may help. My mum, also diagnosed stage 3 was told the same thing but her OC never recurred. The way you are feeling now will pass as you become stronger. I try not to worry about what might happen, worrying wont change a thing and whilst you are worrying you will be missing out on living. Stay strong, sending you a big hug. Kathy xx

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Hi Kathy. Hope you are well. Just a question? I've heard about a lot of daughters who's mum got diagnosed with OC and now they have OC too. I know most are negative for any genetic defect. So is it possible it's passed on from the mum to their daughters. Thank you

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Hi. I suppose its possible but Im not sure. With me I tested positive for BRAC2 gene. Turns out my mum had it but we didnt know until I was tested and I had it confirmed that she had passed it on . xx

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Thank you for getting back to me. That makes things much clearer. Stay well and blessed. Praying for a miracle for all you ladies including my mum. Hope something great will pop up soon to end all the nightmare.

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Hi K

Yes can totally understand how you feel .

Diagnosed stage 4 a year ago and still remember clearly the first oncologist I saw looking me straight in the eye and stating clearly that even if the chemo was successful my cancer would come back . Just burst in to tears ! I am now a year on since diagnosis , 7 months since surgery and 5 months since chemo . Currently NED with CA 125 of 10 ( 3880 )when diagnosed. ) Yes it has been a tough year but there have also been some great times with family and friends.

Cancer isn't the first thing I think of anymore and time does help but I have also had some counselling which really made a difference . Was due to start a fear of recurrence course which has been delayed till end of the year . I try to keep my day busy and filled with things I enjoy and not think too much about the future. We are all individuals and we are not statistics . I was told to look at it as a chronic illness which may not be curable but is treatable. I have my wobbles but have learnt to try to make the most of every day . No body knows what tomorrow brings cancer or no cancer . My good friend and neighbour lost her husband in an aweful drowning accident on holiday 3 months ago . He was a fit 51 year old.

Time and some counselling will help . It may not ever go away but we can find a place to park the fear while we get on with living . Take care and enjoy your good days . Love Kim x

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Kouyate, Have you had debulking surgery? Total hysterectomy? oopherectomy?

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Hi Tesla_7

I had a full hysterectomy along with my ovaries, the lining of my abdomen and then tumours were removed from my diaphragm. I also had to have a small section of my bowel removed (but thankfully no colostomy bag was needed) which left a small tumour on the other part of my bowel which my surgeon said he wanted to leave for now having already removed part of my bowel. Thankfully this looks to have responded to my chemo as my ca125 is at 12 so fingers crossed. Just have to wait until my scan results i guess.

Best wishes

K x

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Hi K,

What a shock. I've ovacome the disease for four years now. I was also stage 3C. No-one has ever told me it will definitely come back. However, I was told I would definitely lose my hair and thanks to the cold cap I didn't. Therefore, not all the 'definitities' are definite.

I stopped buying clothes for a while thinking I'd never get the chance to wear them but that soon changed and I can't get any more in my wardrobe. I've also started learning new things. I'm carrying on as if I'm going to live a long time. Booking holidays quite a few months in advance, learning to play the guitar and knitting things that will take ages to complete. I do bobbin lace making and I'm making a tablecloth. It will take years to complete. I'm not giving up.

None of us know when our time is up. I could walk out my front door and get knocked over by a car and the way they drive round here that's more than likely. I plan things and do them. The only change I've made is when I read a book, if I'm not liking it I don't bother with it any more where at one time I'd read if anyway. That was a waste of time.

We start watching series on the TV we don't say well I won't watch that because I won't be here to see the end. I stock the fridge. I don't think there's no point I won't be here at the end of the week. We all have our ups and downs.

Sorry, I'm rambling but what I'm trying to say is never give up. We are the lucky ones. We're still here. All the very best to you. Zena x

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Zena, best response ever!!!! HOORAY!!!! I've decided I'm here now and no one can take that away!!! I use DENIAL of recurrence as a healthy detachment in order to get on with my life. Smiles, Hugs. T

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T. I'm not in denial I'm just living my life as I always did, not knowing when my last day will come. I'm so pleased you will be doing the same. Oh, and don't forget to eat chocolate. I will never be denied that. Best wishes. x

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Wow ladies, thank you all for taking the time to reply to me :) your replies have been a big help. It's such a comfort to read your stories and reassuring to know that you have proved that there is life afterwards and just because they say it'll come back, it doesn't necessarily mean it will happen. And even if it does, there's treatment out there and you have fought this disease and come out on top again. At least now when I have my wobbily days I know i'm not the only one. I'll just bawl my eyes out then dust myself on, think about all of you lovelies and your words of advise, and get my fighting head back on!

Sending you all my very best wishes and hugs for your kind words :)

Kouyate xx

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Dearest Kouyate, every single living thing on the planet is going to die, eventually. The only difference between us and them is that we THINK about it! So, give yourself a break and fill your time with precious family, friends and activities you love. Hugs. T

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So glad to hear you have had good results from your treatment. You will start to get over the chemo fatigue soon and will be able to get out and do the things you love. It may not come back; it may recur after you've been free for years. But treatments are developing all the time so it will be dealt with. As you develop some activities you won't think about cancer so much. I've made two good friends since my first treatment; walked 100 miles of the Pennine Way and I have a new grandson (3 now).

But as to advice, I go with it if I can. Howl into the duvet. Then I feel better again, though sometimes it takes a while.

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These posts have cheered me up no end

Spoke to CSN today after the MDT as my CT scan has shown OC in both ovaries and some as cited so it's spread and they weren't sure if I'd need chemo before surgery but I've been told surgery first! Appointment for ore op next week!

I've been sat here all day fearing the worst and doing exactly what you've all said, thinking I won't see Christmas or my grandson whose 2 grow up and wondering whether to bother with Game of Thrones! Your posts have made me feel more positive about the future even if I'm stage 3 or 4 and I'm not sure what stage I have yet but I was thinking worse case scenario.

This site and you lovely ladies have so helped me through these past few weeks since this nightmare began I can't thank you enough xx

And thank you kouyate for your initial post x

Take care everyone

B xx

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