Surviving

[manumezza]

Hi, my mom 74yo, still full of life, has been diagnosed ovarian cancer serous tipe high stage 3C. A shock for all of us and my dad too. She had surgery and now is having chemo (had 3 out of 6 taxol + carboplatinum and also bevacizum for about 22 times in total) - a lot of pains and now frequent “depression” moments. She is in great fear, and we are too despite telling her we need to fight and stay positive and despite keep on giving her as much normality and optimism as possible. I am now so frightened and frustrated and feel in need of hearing positive successful stories to share with her, as she lost a friend for this 2years ago and keeps on saying this bad cancer is not letting you survive. Plus how is recurrence at 3c stage? Experiences to share? Many thanks to all of you for any support you may share.

[Lyndy]

Hello... sorry to hear about your Mum. I think it is common to feel fearful... I certainly did at first and it’s hard to believe that things will ever be normal.

I was diagnosed at stage 4 but I responded well to my initial treatment ( just the same as your Mum’s) and have not had a recurrence, it’s 4.5 years now.

The most useful thing the oncologist said to me was that ovarian doesn’t play by the rules. You can’t compare your oc with someone else’s, you can’t assume either the worst or the best.

Maybe it would help your Mum to hear this. Living with uncertainty isn’t easy but once you know that is what you must do... you can share that knowledge, ask others to support you and so on. Tbh I think ‘fighting’ may not be a useful way to approach this... maybe accepting is more helpful. It’s something to ask her about anyway.

She should feel much more normal once on Avastin.. maybe she will feel more like addressing her relationship with this cancer. Good luck to you both xx

[manumezza in reply to Lyndy]

Thank you, useful insights and stimulating thoughts. We’re so new to all of this that we have so much to learn on how to deal with it. My mom is a bit “lost” and we’re trying our best to support

[lewisriley1947]

I was diagnosed with stage 4 high grade serous in 2012 and although in that time l have had 4 recurences l am thankfully hear still to tell the tale currently on a parp inhibitor fo maintenance. Try to stay positive and live in the moment they say that cancer is now classed as a chronic illness and they are coming up with new trials every day. I know it is all very daunting to start with but once you start treatment you will get your head around it and feel a lot better. I was 65 when diagnosed now 73 I wish you well with treatment. Pam

[manumezza in reply to lewisriley1947]

Thank you Pam. Wishing you all the best, Manuela

[Numi]

Hi - 4 years ago today I was in hospital for the biopsy that gave me my diagnosis of 3c high grade serous. I had surgery followed by 6 rounds of chemo. A year later I found I had recurred and had a further 6 rounds of chemo. I then went on to Niraparib (Zejula), and have been doing well since. Despite also acquiring a stoma during my surgery, I'm active, travel, go to specialist exercise classes, sing in a choir, have seen my daughter married and become a mother and my son become a father. I joined a local charity (it's their classes and choir I'm involved with), and have made so many new friends - despite our all being affected by cancer, we have so much fun and laughter. Of course I am fearful at times - it's only natural when you know you have a cancer that's not curable - but I'm determined not to be defined by OC, when I have so much in my life to enjoy and be thankful for - not least the love and support of my family, which you are obviously giving to your mother. It is possible to live well with Stage 3, and you will find many women on here who do - I've found their stories and positivity invaluable and I hope you do. Wishing you and your mother all the best.

[manumezza in reply to Numi]

Thanks so much for telling me your story. It is really true when they say “sharing is caring”. Thank you!

[Shorty864]

I am going into my 8th year. Was diagnosed in 2013 had all the normal - taxol and carbo, debulking and did nearly five years in remission, and have had since, different chemos, Niraparib, and now on Caelyx and Avastin. Hoping to start a trial in the New Year. I am 71. Having hope, something to live for and good health, is a good thing tell your mum. All the best to your mum. Anne

[bamboo89]

I agree wholeheartedly with Lyndy's comment; it isn't really about 'fighting' or even necessarily continually being 'positive', it's more about a huge mental/emotional adjustment and achieving philosophical acceptance of the situation as it is, and continuing to live each day one is given. Ovarian cancer is now seen more as a chronic illness which may (or may not, you never know) require periodic treatment unless and until treatment is no longer possible. If/when treatment is no longer possible, well, one way or another, none of us gets out of here alive anyway, with or without cancer; accepting that incontrovertible fact, yet continuing to live as well as possible until that day arrives is more the way to go. This idea of trying to 'remain positive' and 'fighting' is an approach I've always found rather exhausting - the fact is, we're all here, dealing with stuff, until we're not, even without any kind of obvious disease, and while we are here, we are alive and living life, which is the important thing. I am reminded of my oncologist's response when I asked, after surgery, am I dying (I'm stage 4b) - he said "well, we're all dying"... and of course, we sort of are, really, that's been both a risk and a certainty since the day each of us was born. I think that's the thing to get into perspective - then it's easier to carry on and make the best of whatever there is available in life, rather than being anxious and depressed about dying all the time.

Fingers crossed your mum copes well with all the treatment and either has a long period of remission or remains NED. Good luck

Miriam

[manumezza in reply to bamboo89]

Dear Miriam, thank you for all your thinking and suggestions on how to approach. Over the time we have been aware of my mom situation, i have had a similar approach. It is there, and we have to treat it but we also are called to enjoy what we are given the opportunity to live. Also for a second i thought this gave me the opportunity to see my mom and dad for longer periods of time and more frequently (i live in uk with my family and mom and dad live in italy). But sometimes to see her so much in pain and so overwhelmed makes me go home with an incredible burden. I heard your voices and i really would like her to speak English to be able to be part of this group. I’ll do it for her and I cannot wait to see her tomorrow to tell her about your stories and reflections. Thanks to all of you for sharing.

[bamboo89 in reply to manumezza]

If you mean physical pain, I'm sorry for that - chemotherapy isn't a pleasant experience and can be tough to get through. Please do pass on what we all said - my words are for her primarily anyway; for you, the possible prospect of loss and having to stand on the sidelines watching the suffering is very, very hard and difficult in a different way - you can only tolerate so much. My son is in the same situation as you, unfortunately.... Take care

[manumezza in reply to bamboo89]

Thanks Miriam, she is in physical pain (constipation, joint pain, weakness, high blood pressure) and also pretty depressed, plus she tends to worry a lot by nature - i know it is a side effect of chemo but sometimes she doesn’t see it. That’s why i was looking for stories to tell her and experiences she might be supported by. my pain is for her, actually i’m not thinking about myself for now. I try to be helpful despite living far but luckily being helped by husband and friends looking after my kids when i travel. This very sad moment of life is also teaching me a lot and making me feel very grateful for the people I have around. Wishing you all the best, thanks once again for your time

[bamboo89 in reply to manumezza]

All sounds like chemo side effects, unfortunately, though the depression would probably be there even without chemo. Be prepared for when she finishes treatment - women often feel very vulnerable and more anxious after it's over.

[manumezza in reply to bamboo89]

Thank you. I will remember this. Wishing you all the best

[ZenaJ]

Hi, it is a shock but there's always hope. I was diagnosed 3c June 2013, had the op and chemo and live a perfectly normal life. Keep as positive as possible. I'm sure it helps. Best wishes to you all. xx

[Hidden]

HI Manuela. My situation is similar to that of your Mum's, except I've been there a lot longer, so may be of reassurance to you. I was 60 when diagnosed & 73 now. I'd always been healthy, which made it unbelievable to me at the time that I could have cancer. It was Nov. 2011. I was diagnosed 3C, high grade serous. I had 2 major ops & the usual 6 months of chemo. I went straight into remission. As someone else has said on here that when you first go into remission, you feel as if you've been cast adrift for a while (but that's not what you need to know at this early stage). After 18 months, the cancer returned and I went back onto chemo : Carbo/Caelyx/Avastin (Avastin is what your Mum's on but using the name that's used in UK & Australia). Avastin worked wonderfully for me . I'm still on Avastin, so that's in the region of 85-90 infusions, 3-weekly. I think it's about at the limit of what it can do for me, but what a performance! There've been so few side effects - runny nose, sneezing and gradually rising Blood Pressure, for which I need to take B.P. pills to control it - that's about the lot. Everyone tells me how well I look. I have no idea if it makes a difference, but everyone is very supportive : husband, family, doctors, nurses and I belong to an OC support group. We all do our best to support each other but have to admit that chemo brain makes us forget things!

When first diagnosed, I told myself "Well, it HAS happened and I'm just gonna have to get used to it". That's what I've tried to do. Don't force yourselves, but do your best & never let yourselves be a victim. Don't let that disease own you. It affects us all differently, so try to take as much control as possible. Do some kick-ass Manuela, you'll probably be the best person for your Mum. Best wishes & good luck. Pauline.

[manumezza in reply to Hidden]

Oh Pauline, your words makes me emotional. From the deep of my heart, thank you! This is a great coaching for me and I pass it to her; i’ll be with her tomorrow and the rest of the week, she had chemo today so these won’t be good days but we will spend a lot of time together. Thank you once again

[Kkaren]

Hi, I also was diagnosed with 3c in May 2018. I am the worlds worst worrier and over thinker. I had surgery and chemo which I finished in November 2018. The only health issues I have had were related to the surgery (ended up needing kidney stents due to the surgeon twisting one of the tubes to the bladder and stitching the other) and the side effects of the chemo. Other than that it’s been pretty much business as usual. I went back to work in February 2019 and haven’t had a day off sick since then.

The emotional part is by far the hardest and one which I struggle with at times. As a couple of other ladies have said it is treated as a condition and as my nurse also said if it ‘misbehaves’ then we will treat it again. Daft I know but I always told myself that in terms of stages I was only just over the 50% mark. Just crept into the stage three and no more. It’s a lot to take in for you and your family but if I had known then what I know now I wouldn’t have spent so much time worrying. Xx

[Lizchips]

Ok, I get the shock , I was never a person to cry about spilt milk. I was diagnosed with stage 3c clear cells ovarian cancer in April 2014, 5 yrs 8 months later no reoccurance. I had a 2 lb mass removed an second surgery debunking 15 lymph nodes removed cancer in 2. I did what's called intraperitenil chemotherapy, also called stomach wash chemotherapy, ask about it. I never worried about this causing me to die. But I will tell you attitude is a big part of survival. Best wishes for success.

[JanePW1965]

Hi Manuela. My mum was diagnosed with Grade 3 High Serous OC on Christmas Eve 2013, aged 77. I went into total shock and thought "this is it". She started chemo in 2014 - Carbo/Taxol with debulking surgery in the middle. In Oct 2014 things looked really positive but in Jan 15 she had the news of a recurrence. Such a blow. She then had 6 x Caelyx. Although her CA125 remained over 100 she was 'stable' for around 18 months but then the beast woke up. Again, she had third line Carbo/Taxol and it seems to have zapped the tumours, which were in various parts of her body. I guess there had been some stray cells which travelled round in her lymphatic system. So, she had her sixth and final Carbo/Taxol infusion on 9 June 2017 and has been stable since with her CA125 at 10. I just can't believe what she's gone through and how normal her life is now. She's 83, still drives, manages her own home, has a good social life. Unfortunately, she has some numbness in her right foot which was probably caused by the Plaxitaxol. (Prob spelt that wrong!!). But otherwise she has a great quality of life. I live over 200 miles away. I've just spent two lovely weeks with her. Every case is different. Sending positive vibes and huge hugs. Stay strong and positive even though it's so difficult. Jane XXX

[manumezza in reply to JanePW1965]

Thank you Jane, it has been a long and difficult week for my mom and I just red her your answer - she felt good hearing your mom’s story, she needs a lot of courage and coaching by now .... thanks a lot for sharing, sendings you back a lot of positive vibes ❣️