Scared: Hello special people. I'm scared. My OC... - My Ovacome

My Ovacome

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Scared

TudorPurr68 profile image

Hello special people. I'm scared. My OC returned despite being on maintenance Avastin after major debulking surgery and total hysterectomy. It's in my stomach lymph nodes, on my bowel, liver, peritoneum and omental area. I was told I might have another five years if the carbo and Caelyx work enough, so I might reach 56. I have some ascities again now, small but there, and just came out of hospital having suffered a severe bout of diarrhoea and vomiting. I am so scared I'm dying I'm becoming obsessed and depressed. Am I dying, is this it? Has anyone else survived longer after such a diagnosis? I get very breathless after short exersion and am very weak. I am very scared 😟 💊 🕯🌹

11 Replies

You have had a really rough time but I don’t think putting a time limit on your life is helpful. There are people on this forum who have outlived their prognosis by years. Right now it’s about getting through that tailspin of shock..we’ve all been there. Give yourself some time and collect as many hugs as you can. You will be able to think more clearly after you have processed this a bit. Lots of love xx

Please try not to panic although I am in your situation and it is the scariest thing when your OC returns. I am also finishing first round of chemo for recurrence (Diagnosed Feb 2018) and there are lots of further treatment options out there for us now. Some women have several recurrences and chemo regimes and live a much longer time. Have you had your BRCA status confirmed? I also had Avastin without much effect and its not great for everybody. Also speak to your CNS and write down any questions for her. Good luck and let us know how you get on, xx

Firstly no Oncologist or Doctor knows how long you have on this planet, we are all different and respond to treatment differently. I would tell them to keep their guess work to themselves.! Diagnosis is a scary time, but please don't let the fear of dying tomorrow, prevent you living today. Try to take one day/hour at a time and live your best life with the hand you have been dealt. Even before your diagnosis you were going to die one day, did you spend every waking hour worrying about it? no of course you didn't. Your team should be pulling out all the stops to address your symptoms, giving you a good quality of life. Good luck for the future. Gently hugs Lyn x

Hi Tudor. I'm sorry you are feeling as you do. I'm not sure how they can give a time limit. My mum 2was given a time limit of less than 5 years after diagnosis and I was given less than 2. Well mum made it another 14+ years with no recurrence of the ovarian and I so far, despite 2no recurrences am still here just into my 13th year. Don't write yourself off and don't let others do that either. Oh and by the way my Dad wasn't expected to do well after surgery for lung cancer ...... no chemo...... went 32 years. As my Dad's oncologist said to him when my Dad asked how long he had 'how long is a piece of string'. Albeit in an accident, that Oncologist dies 2 weeks later. You never know...... xx Kathy xx

It is very scary when you have a reoccurrence. It will take a while for you to adjust and feel calm again but know that you will.

And as others have said no one can say how long any of us will live and much of the guess work some medics dabble in is based on out dated statistics anyway.

I too was diagnosed with Stage 4 OC back in Spring 2014 when I was 49 years. My prognosis at the time was not brilliant and I was inoperable. However despite that I responded well to chemo and was eventually able to have debulking surgery.

Currently the little buggers have set up camp in my liver and chest. I am therefore now on my 4th reoccurrence and 4th line of chemo but plan to be around for a good while yet.

None of us know what the future holds so don’t throw in the towel just yet.

Juliax

Hello,

I’m sorry you are feeling so low. Most of us have been there, some for longer than others. Can you find a support group near you or have you got a Maggies in your area?

After my first carbo/taxol I felt awful, couldn’t walk any distance and even going upstairs was a major issue. I’m back to taking my dog for a three mile walk every day.

I’m in my sixth year now after some recurrences. There is always something new out there to help us with this horrible disease.

Love and hugs 🤗 .

i was diagnosed early in 2008, & have had recurrences, am living with a recurrence now, but well over 11 years after diagnosis, I'm still very much alive. i asked my oncologists twice if they could give me any idea how long I had, & was told they couldn't. I'm not sure how they can give you a 'guesstimate' of 5 years, & I'm sorry you're currently feeling so scared & depressed.

You say you have just come out of hospital after a severe bout of diarrhoea & vomiting. That, I would think, is likely to be making you feel more weak & depressed at the moment. I hope that when you've had some time to recover you'll start to feel stronger & better able to cope. Di

Hi I have no experience to help you, as I still have two Avastin treatments to go. I just wanted to send you a big hug and tell you to fight. I’ve read on here people with 1st 2nd 3rd etc reoccurrences and like the first time they fought and survived a long time and that’s what could be for you. I’m 52 and if they said to me 5 years, well I can’t put what I would say lol, as I want longer and so do you. Lots of love x

I wish I could wiggle my nose for you and for me. I also have on reoccurrence. 😢 do things you enjoy, talk to a therapist. Enjoy life. When I need to get in the moment, I spend time with my dogs. Big hugs to you.🤗🤗🤗🤗🤗

No words of wisdom to get rid of the fear. Just know that there are many people defying their predicted demise and lots of them have posted on here. Give yourself time to get over the shock, and remember you are not alone. Love Pam x

Hello Tudor, as you see from my belated reply, I'm rather behind with reading all the Posts. I do hope you're feeling a bit better today. I so feel for you. I well remember my first recurrence. It was almost as shocking as my original diagnosis. I've now had three recurrences and Chemo each time which although it didn't get rid of everything, it held me stable. The last Chemo helped a bit but I still had some things growing slowly. I'm now about to have Radiotherapy to try and shrink somethings in my pelvis. I have tumours all over the place from pelvis to neck but thankfully I can still lead a good life. Obviously not quite so well during Chemo. I say I'm well past my sell by date because I had my diagnosis 13 years ago this month!! I'm so lucky. We didn't think I'd survive many months.

Try and keep happy music on and don't sit in the gloom in this horrible dull weather, put a nice light or lamp on. Try and watch funny things on TV, too. Phone a friend for a chat, too. That helps me.

Sending love and a big hug, Solange 😊

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