I wondered if anyone on this site has had a long remission after recurrence to peritoneum and who are not BRCA positive. As I understand I have less options as I am not BRCA positive and unable to have maintenance drugs. I am so very scared of it coming back. It the last thing I think about when I go to bed. If I wake up in the night, which I do many times, it’s there. It’s the first thing I think about when I wake up. I wish I was brave like so many if you ladies but I am terrified. As time goes by I know it’s cliser to coming back. With much love to you all brave warriors xxx
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rosieb7
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I am not BRCA positive either and am having a long remission.
I know how you feel, I worry on a day to day basis, it wakes me up in the night and is the first thing I think about in the morning, but I have said before there is no point worrying about what may not happen, otherwise you ruin the good times.
I too am terrified as are most of the ladies, but keep busy and have the head in the sand mode of approach.
Maybe you need a bit of councelling or speak to people in the same position, I hope you find a way of coping, we are here for you,
Thank you again for replying. So many ladies on here are so brave and then there is me. My husband gets so annoyed with me and cannot understand why I am worrying and should not even think about it until it happens. After being clear for 10 years and then it recurring and now in my peritoneum it was such a shock. I will try and get some counselling.
that does sound like a lot of men....a bit of a head in the sand mentality....mine recurred very quickly in the peritoneum and is progressing, but it is not the end of everything...yet(!) I think counselling sounds like a good idea as it must be such a shock for you particularly after 10 years....love Cxx
I am so sorry to hear that it recurred so quickly and progressing. You sound so accepting and so brave. It makes me feel so silly when there are ladies like yourself in a worse position. Chrissy I send you all my love and prayers and hope they will stop the progression and stop it dead.
I think we all struggle with the daily stress of knowing recurrence is likely. My Onc did tell me that the gap between recurrences can be a long one and that the longer the better because you can tolerate the chemo better if you have had a break. Please don’t blame yourself for finding it hard-I think your husbands reaction says more about him not coping than you being unreasonable!
I think we all worry ourselves silly about a recurrence. And I think we would all find it hard not to. We have to all try and find a way of dealing with our worries. Like others have said keeping busy is a good one. Staying fit and as healthy as we can. Starting new hobbies/interests.
Waking in the night is hard. It’s quiet. Dark. A great breeding ground for worries!!
My bedside table is now full of coping technics for the nights this happens.
Earphones. iPod. Books of short stories. Calming oils and creams. Earplugs. Calming music CDs. Torch. A little note book and pen to write down how I feel. Or lists of things I need to do. A little photo album of friends and family. Great to look through and remind me why I have to stay positive.
I’m also BRCA negative. But they are working hard on treatments for us too.
There are options.
No one can tell you not to worry. It’s only natural. And no matter what anyone says we will worry.
But I hope you can find some ways to help you through your worries.
I’m sure there will be loads of other brilliant advice here. Xx
Thank you for replying. I will try some of the techniques you mentioned as I wake up so often in the night and sometimes think of the worse scenarios and then begin to cry.
The ladies on this site are incredible and sooooo supportive and brave. Thank you for being one of them. Big hugs xxx
I know I am not the only one struggling. My friend had told me to do a list each day of what I am grateful for. I will start this evening. Sending you love xxxx
Hi Rosie. Although Im BRAC positive I have recurred twice to the peritonium and enjoy 2 remissions, currently 4 years 4 months although I am on Olaparib, which btw is being trialled for non BRAC ladies. Have you thought of looking to see if maybe there is a trial u may be suitable for as u mentioned a maintenance drug? Also it may be worth speaking to yr hosp to see if there is help available to help with coping with yr diagnosis? Wishing u well. Kathy xx
My consultant said in a letter to my doctor unfortunately I was not eligible for parp inhibitors as I was not BRCA positive and I would have limited treatment options. Also told me in December as I asked would they use same chemo when I recurred. She said yes possibly or a different one until it stopped working or I decided to stop treatment. This brought with it lots of dark thoughts for me and what the inevitable is. I know the last time you sent a message I felt positive because of your long remission until recently when my consultant informed me my options were limited and unlike you unable to have maintenance drugs. I am so pleased you are doing so well and hope it continues always. You are so lovely and always so helpful and kind. I am trying to get some counselling as I am not living my life, just constantly worrying about a recurrence and would I get through it again. Thank you so much for replying. Bigs hugs special lady xxx
Hi Rosie, Your Onc is incorrect as they are trying Olaprib for non BRAC positive OC as well and I had a long discussion with my oncologist about it, so it might be worth looking into. I do hope you manage to get counselling and it helps. sending you a warm and gentle hug. Kathy xx
Hi Rosie, my Onc was also telling me about a trial that is coming up which is a Parp with another drug which works similarly to Avastin that is probably coming up which may be useful for us non-BRCA ladies. X
I'm not brca positive either and have been cancer free 4 yrs come April. Try your best to stay positive. Pick up a hobby a few times a week gives you a positive thing to look forward too. Painting etc. Lunch with friends .
I got that impression from my Consultant after being told I was BRCA negative and if I had been BRCA positive was told would have to wait till my third recurrence. I have sent you a pm.
It is not easy to live with the thoughts. I have been a very independent person all my life surmounting all obstacles with ease , however after my op seven years ago I found my self in anxiety/depression after about 2 years.
I went for councilling, it was a great idea to talk with a specialist. I believe 70% of cancer sufferers get depression. It is sadly unavoidable and ‘normal, It is no dishonour. It helped enormously and I have been fine.
I had a small relapse over Cmas as I had a mouth problem which wouldn’t heal, the Doctor fast tracked me into Hospital but all was ok.
I wasn’t afraid if dying (I am a Christian) it was going through all those needles and procedures again that triggered my relapse.
It only lasted a few days and the strong foundation I had built since the councilling finished about 3 and a half years ago soon righted me (and of course I learnt that all was ok)
The anxiety is still in the background. I am fortunate and was able to tailor my life to remove other worldly problems eg work etc which makes life easier and also ensure you have ‘me’ time....you deserve it !
There are a lot organisations that offer councilling . Sharing your anxieties especially with a professional will make a big difference. Actively ‘work’ at not ‘worrying’. Push it from your mind when it rears it’s ugly head, try to concentrate on the positive.....buy flowers, hug children !
We live in a broken world, but within that world exists a beauty both in nature and in people. For those of us in adversity it can be more difficult to discover but when we can push through the veil of negativity we can see these beautiful things with a renewed freshness and vigour. Keep pushing to rediscover this world, don’t let your fears and anxieties become chains that bind you, push on ...onwards and upwards, be proud of yourself as you make strides forward, you can and will overcome and then you will feel good even if you overcome a Little day by day.
I agree although we live in a broken world I realise I have been unable to see the beauty in nature and in people because of all the fog and mist surrounding me. Sometimes is so thick I can’t see or feel anything but fear. It does sometimes disperse but it always come back. I thank you for your words which are so true. I know I must try and see the beauty or I am letting this disease win.
It certainly is not easy.... after all the trauma of op and chemo it knocked me for six, it beat up my body.
When you are like that you need professional care and time.....to recover.
Councilling helped me to realise that i was ‘normal’, had been beaten up and needed to care for myself. It taught me that it wasn’t wrong to feel ‘weak’ as that was the state i was in mentally and physically. I acknowledged this then i could crawl out of the hole. I have a loving family lots of loving children and grand children but you need to think of your needs in order to recover.
I understand this ‘fog’ all you can see is problems and no future... it must be said that this fear of the End is the thing that most people run from in their minds all their lives. When it happens to a close one we put it from our minds and lives as soon as possible, people never confront it. We are therefore not prepared for the possibility of The End shock as our culture and society have never really prepared us for this... so it is difficult to process. We are amongst the few that are put in a position where we have no alternative but to confront.
For me..personally, the experience brought me closer to my God than ever before, His love and providence helped me no end.
We must dismiss this from our minds, not entertain these negative thoughts, none of us know, in the short term what might happen, there are survivors of decades, my wife’s grandmother survived cancer 3 times and lived to 102! I am 7 years down the road and year by year my health and appetite have improved....so it gets better. Walking holiday this year !
I was operated on by the Dept in Maidstone that the Government closed down due to too many ‘failures’ but it obviously didn’t affect me so we must be positive and seize the positive things and dismiss the negative.
You have life...it is there to be embraced. Please work at it (alongside councillors?) it will surely come...
What beautiful words and so frank, thank you for taking the time to write that and for your honesty. I am so pleased you are doing so well and have embraced life.
I am on a waiting list for counselling so hopefully that will help.
Dont beat yourself up about feeling fearful. Youre responding in the most natural of ways. Learning to live with OC and not letting it control all aspects of your life seems an impossibly difficult task. You may find that mindfulness helps you? There are lots of different ways to do this, try to find one that works for you.
My mum recently finished 1st line and our minds were racing ahead to the end of chemo 'how we'll be monitoring you' conversation only to find its grown elsewhere even during chemo. So there is more surgery pending but i can imagine havinv intensive treatment and then nothing (or rather lower key maintenance) mudt be quite unsettling. Maybe talking your partner through how it makes you feel would help him to understand a bit more, although i appreciate it can be very difficult for any loved ones to truly know what its like.
If all else fails, i find colouring books very therapeutic. Who says you can only colour in beatiful butterflies during usual waking hours! Focusses the mind on the project at hand. Best wishes xx
Hello Carole, like Kathy I have peritoneal cancer and had 2 recurrences also not BRCA positive. Unfortunately I have to start chemo again in February and after three sessions I can start on an inhibitor. It is available, just keep asking. I try not to worry but the thought is there every day.
You should ask about some counselling, try anything that might help. I find this site is like my counselling so much friendliness and information to be found.
Hi Katie, I also have peritoneal cancer after having ovarian tumor removed and debulking surgery in june June 2017. I had 5 cycles of Carbo/ toxil but then discovered it had spread. I have had two cycles of caelyx and then had scan. Was told yesterday things have remained stable. Going to have another 2 cycles of caelyx and then again see how things are looking. My consultant was more or less saying if this doesn’t work I will be offered nothing else but palliative care. There must be something else out there for me to try. I actually don’t like my consultant, he has never said anything positive about my treatment but I know my cancer on the scan is not that large by any standard. Any tips/advice would be much appreciated.
I’m BRCA2 positive but platinum resistant so I can’t have the PARP inhibitors. I too worry about recurrence happening quickly but you just don’t know. I’ve heard about women who have been on maintenance therapy and only for a few months and I’ve heard of women who can’t have the maintenance drugs and do very well in the treatments which are available to them. We are all so different and our bodies are so different. Try and keep positive.
Thank you for your reply. Yes what you say is true we are all different. The replies I have received have been so helpful and I know we are all in the same boat and here are so many amazing ladies on this site with lots of helpful advice.
Sending my love xx
Hi Rosie I also worry about reoccurrence, usually at about 1-2am when I wake up & bam there it is that little niggling horrible little creature called ‘Fear’ . It is actually good to know I’m not the only one so tonight when I wake & Fear is sitting on my chest making my heart pound I’m going to think of all my ladies who are in the same position & tell Fear to ‘F Off .
If we all do it perhaps our collective spirit will help us all xx
Your message made me smile and tonight I will also tell that horrible creature to do one. It seems to like to scare us and only appears when we are alone. Thank you for taking the time to message me too.
You have had lots of great advice and I think it’s about finding what works for you . I have had counselling through the Dimbleby centre at Guys , firstly some one to one sessions and then did a 6 week fear of recurrence course where I met other cancer patients all with their own fears . I learnt that the fear for me will always be there but we have a choice about whether we let it control our actions . They used lots of different mindfulness techniques and breathing exercises which help me . Still have wobbles and sad days but it’s ok .
It’s good to stay positive and live for the moment but we can’t be like that all the time and sometimes if we try and ignore our fears they come back even stronger . She described it as trying to push an oversized duvet into a small cupboard that just about shuts and when we least expect it the door will fly open .
I think counselling would definitely help you so try and chase it up if through gp or contact local cancer centre like Macmillan.
Have also heard great things about centre in Bristol called Penny Brohn , like a retreat look it up on website ( free for first session and think you can take partner too if want to ) .
Funny because as I got physically better and stronger I felt worse emotionally, but have been told that’s very common and it takes longer for our minds to deal with the trauma we have been through survival mode .
Other things that have helped me , apart from this amazing forum , walking our rescue dog , Zumba ! writing my story for Ovarian cancer Action and speaking at an event. Party for my daughters 21st 🎉Meeting up with a couple of other ladies locally that I have met at hospital .
Breathing exercises and mindfulness but definitely the counselling . Also getting a second opinion regarding stoping the avastin and future treatment if needed .
Hope you find something that helps you .
Also realised that there are lots of people living with fears , those who have had heart attacks , strokes , have unwell children apart from those living with any cancer diagnosis. We are not alone . 💜
Thank you Kim for such great advice from the heart. I am on a waiting list for CBT counselling. Having read all the good advice on this site and everyone's good wishes I feel blessed.
Hi, from what I understand there are PARP inhibitors which are suitable for BRACA negative people, such as niraparib?. I believe I know someone who is taking a PARP inhibitor, possibly Olaparib and is BRACA negative. I'm BRACA 2 positive and hope to start on Olaparib soon. As someone has posted, there are trials for PARPS on BRACA negative, plus even if your blood test is BRACA negative, your tumours may develop a BRACA genetic mutation, so I understand. Best Wishes
Thank you for your reply. I will ask my consultant although she led me to believe I would not be able to have PARB inhibitors. Originally I was told because I had had cancer in the past the new NICE guidelines meant the would only be available on third recurrence. I do have a BRCA mutation but they don’t have enough information on it to say how it would or could affect me.
I've just started Olaparib after completing third line chemotherapy for second recurrence. There is first line/ front line treatment after diagnosis and then subsequent lines for each recurrence, first, second etc. You're right NICE guidelines stipulate PARPS after third line treatment ( ie after treatment for second recurrence, not third recurrence). The Eve Appeal charity has a nurse, Tracy who regularly meets with Astra Zenica, the Olaparib manufacturer. She knows about other PARPS too, very knowledgeable and helpful. Helped me. Also Ovacome helpline. I would give them a ring. Good luck
Hi Rosie. Regarding your fears I could have written this. All people tell me is that if I’m not positive it will spread. That I must be strong; I wake in the night and like you it’s thé first thing I think about in the morning and the last thing at night. I even dream about it. Everyone I meet tells me how wonderful I am, how up beat and positive I am- but I’m not!!!!!! I’m terrified and sad. My cancer was diagnosed in 2017 and came back 2019. I’m about to start 6 more cycles of Carbo/ Calaeyx and despite the fact I’m BRACA negative I have been told I am eligible for parp inhibitors because of reoccurrence so get a second opinion. Dare I say it: Stay positive , stay strong. X
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Very down today
Why am I worrying?
Big Decision to be made.
