Recurrence - Is it really a case of 'when' or could it be 'if'.

Hi everyone,

I've just joined the site. My mum is 54 and got diagnosed with OC in July. It had also spread to her bowel. She had a full hysterectomy and some of her bowel removed, and the surgeon said that to the naked eye, it looked like they got it all and they were happy with the result. She's about to have her third session of chemo (she'll have 6 in total). It is a 'low grade' cancer apparently. Today we went for an appointment and were told that her scan from last week shows an area that could be disease that's still there, and that there were some 'specks' in a lymph node / gland. The Oncologist is very nice, but talks like it's definitely a case of WHEN and not IF it will recur in the future. Can anyone tell me if that's the case? Also, she tried to explain that if there was still cancer present after the 6 chemo sessions, that they had to leave it there but as it was 'low aggression' they would hope it wouldn't become 'active' again for at least a year - if there is indeed some disease left in there when we're done, would this mean it would DEFINITELY become active at some point in the future? Obviously today she's feeling really low, from feeling like there was an end in sight to feeling like she'll never be free of it. Really sorry to sound a bit despondent, but we're quite new to this and I'd most appreciate some feedback to try and make her feel a bit more positive. I'm pointing out all the positives to her, and she feels guilty when she gets low as she knows she's in a better position than some, but still, I just feel quite helpless.

Thank you,

Angela xx

[Hidden]

Hi Angela,

Welcome to you and your mum... To the club that no one wants to join...you have come to the right place for support..there are lovely people on this site that will encourage you both...

It is good news that your mum's cancer is low grade..this does mean that it is slower than high grade cancer...it doesn't necessarily mean that it will come back...a lot of people on this site have not had a recurrence...so it isn't always the case..there is also a lot of people that have had multiple chemo treatments so we are all different..what happens to one doesn't mean it will happen to another...but it is naturally a shock when you are first diagnosed so understandable that your mum feels this way...but she is very blessed to have such a caring daughter...sending you my best wishes and love x G x

[MargaretJ]

Dear Angela,

I am nearly 20 years older than your Mum and I was diagnosed over 3 years ago. I am going to write my story later to day and try to pass on some of the positives that I have aquired along the way! I too have a lovely supportive daughter!

Meanwhile good luck to you both on this, the most frightening of journeys!

Love

Margaret

xxxxxx

[wendydee]

Hi Angela

Mine was low grade....borderline. The surgeon said he thought he'd got it all. I didn't 't have chemo. I have been lucky so far, but the surgeon told my husband I might get five to ten years. I am nearly at the ten year mark! I know how lucky I have been. I think the medics tell us the possibilities in the worst case scenario so we don't get too hopeful, in case things need fixing later on. With a low grade case they sometimes leave it quite a while before they can operate, no idea of the medical reasons for this, but it seems to be what they do now. If you need more info and fact sheets, go on the Ovacome website: ovacome.org.uk

That may help with understanding treatment options. It sounds as if you're doing a brilliant job in supporting your Mum. All the best of luck to you both. It's a scary time, but it does get better

Love Wendy xx

[daisycandoit]

Hi Angela, I understand why you feel confused by the onc. as Wendy says get more info from the main site and ring the help line. I took a while to get to know my onc. he does swing from 'not unduly worried' to leaving me thinking there's nothing to be hopeful about. So thats one reason to come on here to pool our knowledge and get some hope from each other, love Diane xxx

[ChrisH]

Hi Angela

I think that oncologists always give you the worst case scenarios so that everyone is fully aware what may happen. They don't know for certain, but want you to be prepared. Having said that, there are people that go into long remission after 2 or 3 chemo rounds, no one knows why, so even if your Mum does get a reoccurance, it doesn't mean she will definitely get more. My onc told me its come back once, so it will keep coming back. But I've had a good response to he second round, only one more to go, so I keep positive.

Don't worry about your Mum feeling low, we all do every so often, especially at the beginning, or just before a check up.....I started to worry big time the minute I had my blood tests! I find the worst thing is to suppress the lows, it's better to have a really good cry and let it out.

Good luck

Chris

[Hidden]

Dear Angela

I don't think there is such a thing as definitely with this disease. Your mother is lucky to have you, though it sounds as if she needs permission, probably from herself, to feel and express the grief that comes with this experience, no matter how positive the prognosis. Maybe she even needs a little space for that too. It's a tricky one, because staying positive is also very important. I think you're going to have to read the signals to judge when she needs comfort and a shoulder to cry on and when she needs encouragement and geeing up.

And don't forget your own needs because this is an ordeal for you too. I hope you have other family and friends to lean on and don't feel that you always have to be the strong one.

Warm wishes to you and your mother and come back here whenever you need to.

Love

Linda xx

[Hidden]

This is the million dollar question for anyone with ovarian cancer. Many women (myself included) relapse, despite having a complete response to first line surgery and chemo. However, a sizeable minority don't. No one, not even the doctors, know in advance who will be in what category. So, the trick is (and this takes time to work out) to live as well as you can, to be as healthy as you can because we simply don't know what lies ahead. I am taking this view even though I have relapsed once (and my consultant, when asked, said he thinks it will come back) because, again, there are women who have relapsed once and never relapse again. I try to be an individual and not a statistic, but it took, and takes, work with a dollop of healthy denial to live this way. Hope this helps x

[Hidden]

Thank you all SO SO much for your positive and kind comments. Yes, I suppose it's all about getting your head around the fact that you have to live with not knowing whether it will come back or not... I had a good talk to my mum this morning to say hey, even if it does come back, we can beat it again! But we need to learn to accept that the nightmare won't necessarily be 'over' at the end of the chemo sessions - which is what we were all thinking. Life will be changed forever because we can't see the future (who would want to!). And I suppose in some ways, life will change for the better - she will be healthier, and I am sure will live life to the fullest! I luckily have a wonderful husband (thank you for asking Linda ). We're currently trying to start a family which would be a lovely positive thing to focus on for mum too! And this morning he has suggested we think about moving up north to be nearer mum as it really does buoy her up me being around and I live at the other end of the country (and it would be lovely for my dad too, who gets on very well my husband thank goodness). Your comments and bravery are really inspiring. This is a fantastic site. I just need to teach mum how to use a computer now, and see if she will join in... I wish you all the very best and I am sure i will be back soon - I shall let you know how we get on, and I look forward to hearing more from you Thank you again x

[Hidden]

ps - also loving the 'dollop of healthy denial' bellabee. V important I think ha ha!

[Hidden in reply to Hidden]

Thanks! It was a trick I learned from my old mate Pat who sadly is no longer around but she had a great attitude. Getting to the end of chemo can be a bit of a lonely + scary experience - to me, it felt like being chucked out the end of the tunnel to get on with it all by myself. You are absolutely right - life will never be the same again. For me, I have now completely absorbed having cancer into who I am - I can barely remember what life was like before. It certainly doesn't scare me like it used to (though, obviously, an unusual twinge can bring me out in a cold sweat!!!). Hope you are all getting on OK. x

[MidwifeGill]

Hi Angela

Well.... I have had personal experience of bowel issues! I am the same age as your mum, but I have an aggressive OC ( so they tell me) I had same surgery except the OC had made a tumour in cavity between bowel and uterus and they removed some of my rectum at surgery, also OC in appendix so this was removed too.

they were happy with the de bulking and said they had removed everything they could see....

6 cycles of chemo 3 eitherside of surgery. Finished July 2012.

I had a nagging pain in left rib area even when on chemo... oncology tried reassuring me, but I wasn't convinced .... 10 weeks later I went into bowel obstruction and was blue lighted into hospital, vomiting with terrible bowel cramps... also had ascites (water in abdomen) again.....

My management was steroid drip and to start chemotherapy again.... the oncologist had seen my full body scan results which showed a build up of OC on my large bowel!!

After 3 weeks the tumour had shrunk and the bowel started working again..phew.... I did feel very ill and was very disappointed in my body......they did not want to operate and if they did would leave the tumour and just bring the bowel out ( in an attempt to prevent spreading the OC)

3 months on and I am on 3 rd round of chemo and have started on Alvastin... I still have the nagging pain in that left rib area...so who knows??

I remain as positive as I am able, remain dairy free and macrobiotic /vegan with my diet, and using Traditional chinese medicine alongside the chemo, so can do no more to help myself....

My 21 year old daughter is very angry with my disease, we are planning her wedding in July 2013, so this is my focus at the moment.... I also have a 15 mth old grand daughter who is living with us and my son/daughter -in -law and my husband and I look after her twice a week.... I want to be active in her life and want to see other grand children who will be made in the future ......

Hope that helps.... all the worrying in the world will not change it, I think of my OC as a chronic condition, which I have to manag when acute episodes come along... I live life as if day could be the last and needs to be enjoyed xxx

[Hidden]

Thanks for the response MidwifeGill. You have a good way of thinking about it - something I can suggest to my mum... I wish all of you all the very, very best - a wonderful Christmas and New Year, with lots more to come xxxxx