Reoccurrence bombshell

Hi ladies,

Need some advice and help please. Last year my wonderful mum was diagnosed with stage 3c OV. She had major surgery which included removal of omentum, bowel resection and a total hysterectomy. No visible signs of cancer post op so she had a mopping up cycle of chemo - just carbo as she was allergic to taxol. She got all clear in Feb with CA125 down to 14 from over 1600. She's had a niggling pain and backache over recent weeks so got back in for early check up and sadly CA125 is over 1000 and CT has shown reoccurrence in lymph nodes and ovarian vein. We've been told surgery isn't an option and treatment is now about managing the cancer. Waiting for an appointment to see mums oncologist but in the meantime I wondered if you had any advice/experiences you are happy to share. We're all devastated by this news and personally I'm terrified that this diagnosis means we have little time left together but I just don't understand enough about reoccurrence to know whether this is actually the case. Any help very much appreciated as I so want to be strong for mum and give her as much support as I can. xx

29 Replies

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  • Hi Kez I have stage 3 Oc. Diagnosed in 2007, despite two recurrences still here, still fighting, still working fulltime. Currently no evidence of disease, and this third remission will be 3 years in two weeks time. It can be managed if not cured. I hope that information gives you some comfort. oh and by the way, a remission can be longer than the previous. I went nearly 4.5 years, 13 months and now 3 years so keep positive x Kathy

  • So sorry to hear about your mum. Unfortunately reoccurrence can be a problem with oc. I'm in my 1st reoccurrence after being NED at the end of my treatment but my consultant was honest with me and told me very gently that it would probably come back at some point. He was then very upbeat to say they would keep knocking it back. He said they treat it as a chronic illness that has to be treated long term. Once you and your mum have got over the shock you will get the strength to carry on fighting. Lucky mum for having such a supportive daughter. Ask if there is any counselling available,lots of local cancer charities provide it and it can be really helpful for both of you. Wishing you well keep in touch xx

  • Hi kez

    Iam in my 3rdrecurrence and no longer curable,like your mum I have nodes everywhere,but iam now taking a hormone replacement placement drug that is given to breast cancer patients which hopefully will shrink the nodes and slow the buggers down,I have only been on them a short while and I have noticed a slight change to the size of the nodes in my neck ie they are smaller.the other good thing is apart from the odd hot flush and a bit of dizziness there are no horrible side effects they are called letrozole maybe you could ask about them for your mum .Like you it came as a shock to my family and myself but after a couple of day's getting my head round it I decided with a husband,3 children and 6 grandsons there was know time mope and iam only 57 and not ready to give up yet,so if mum ever needs to chat as it seams we are on the same page contact me,in the mean time send her my love Yvonne xxxx

  • Yvonne, can I ask if your oncologist suggested the drug you mention? Also, is it possible to have this if you've had a hysterectomy. Glad to hear you are doing well and staying strong. Mum has 3 grandchildren and well and me & kez and so we are all determined for her to be around a good while longer X

  • Hi Jodi

    Yes I have had full hysterectomy,plus cervix,appendix and part of bowel recovered 2 years ago and yes my oncologist Recommended them,so glad she has you all,I don't know about your mum but having family gives me the kick that keeps me going,hugs to you yvonne xxxx

  • hi I was diagnosed with ovarian cancer in 2013 I had full hysterctomy and was given chemo as a precaution.in 2013 I had a laparoscooy and was diagnosedwithstage 4c after chemo and radio I have now been nearly 2 years in remission .a few hicups on the way .but keep strong

  • Hi

    Sorry that your Mum has had a recurrence and having to go through this again.

    I've just finished 3rd line chemo and also can't have surgery. This ovarian cancer has a reputation for coming back, it's a clever thing in finding ways to get through unfortunately.

    Now I deal with it as thinking of it as a chronic illness like diabetes. It's always there and you are always going to have to have medicine. They will talk about it being palliative care now but don't be scared of that phrase. It's not the end of the road. I've been in palliative care now for 2 years and certainly intend being here for many more. There are ladies on here who have been doing this for many years.

    Yes it's chemo again but her body has had a rest, believe that the next chemo will do the trick and knock it back. And each time it's giving time for science to catch up with us, who knows what's knocking on the door, round the corner that could really do some damage to the cancer.

    Wishing you all the best

    Dawn

  • Wow thank you all so much for taking the time to share your experiences, it's so kind of you. We were told after the initial operation that it would likely come back within 5 years, we just weren't expecting it so soon - it's literally 6 months since she finished her last chemo session and apart from these niggles in her side and backache she is so well - she looks great which adds to the anger/confusion about her diagnosis. Like you wonderful ladies though she's a tough cookie and at only 61 isn't ready to go anywhere. She has an amazing team caring for her (she's at the Royal Derby) and my sister and I are determined to support her through whatever lies ahead. I think it's just that initial shock and when they say they are treating to manage not cure which is so hard to take. I didn't realise though that she could go into remission again and also that the times in between treatment could be more than the 6 months we've had so far, so that's really positive information I will take away. Thanks also Yvonne for the information about letrozole, I'll definitely mention it to mum. Most importantly though thank you all for letting us know that we're not alone and that there is hope - will cling to that and put my positive pants on today. You're all amazing.

    Much love

    Kerry

    Xxx

  • Yes, Kerry .. these are amazing replies and show that this is the beginning and there may well be many years together. It's not an easy disease at all but with the support of our friends here, the whole thing.can be easier than it may be. Sending love to your Mum and to you both too. Xxx

  • Hi kez and nothing much to add to what others have said other than we all understand the devastation - to hear those dreaded words it's back! I remember crying on and off for days and thinking that's it - party over!

    I'm now going through 3rd line treatment and yes there's tough times but I'm still here and enjoying life - we all somehow find the strength to carry on and so will you and your family.

    Much love to you and your mum - you sound incredibly supportive which is half the battle xxx

  • Thank you so much for the positive replies. This post is from my sister and I think we both needed to hear some of this today so thank you for taking the time to reply. X

  • Hi Kez. I know how you and your family feel about this because I have just had a recurrence after 5 1/2 years remission from Stage 4. I just thought I would go back to the hospital have an operation and another chemo mop up. So it was a real shock when they said they can't operate . I had lots of help and support from the wonderful ladies on this site and realised that this is not the end of the road yet I have too much to live for . So I have resigned myself to the fact that this is something I will LIVE with and just get on with enjoying each day . I am now back on chemo and to be honest I'm coping better this time because I am not weak from a huge operation and also I now realise that this can be kept at bay . New drugs are being discovered and maybe one day they will be able to say the words YOU ARE CURED . Sending love and good fives for your Mum. ๐Ÿ’๐Ÿ’๐Ÿ’๐ŸŒป๐ŸŒปxx

  • Yes, that's what I feel Chris .. xxxc

  • Brilliant post Chris xx

  • Just read your post from 10 days ago , my mum has just been knocked back with a recurrence , we are all so upset , just sat looking on this site for some comfort / positivity , your post as lifted me today an made me feel calmer , just wanted to say thanks xxxxxxx

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  • I'm sorry your mum finds herself in this place. For me finding that the cancer had recurred was even harder than hearing that I had it in the first place and there's no doubt it takes a bit of getting used to - but that was 3 years ago so please be reassured that all is not lost. I look on it now as a chronic condition that can be managed, and with treatment it allows me to get on with life - and enjoy it. I hope your mum's oncologist will be able to offer her one of the many treatments now available. She's very lucky to have you looking out for her and I wish her well.

    Beth x

  • My specialist nurse has discussed Anastrozole with me after I heard of others taking it. I think however that they will offer chemo options first of all. Because I'm ER positive the risk of DVT is higher with hormone therpaies.

    As a first recurrence there will be many options to discuss

    Good luck

    LA

  • It's hard to take in isn't it, I have just finished my 3rd line treatment and have been told to treat it as a chronic illness that they manage and control, I'm stage 4 and when I heard this i cried and struggled to take it all in, I'm 47 and will not give in and planning only good things ahead.

    I know chemo is hard but she will get through it and it sounds as if she has great support from you. Stay strong and we are here if you need to talk take care and wishing your mum all the best for chemo

    Karen

    Xxx

  • Hi Kez

    I want to add my encouragement to all the positive replies you have got already. I have PPC which is similar to OC in symptoms and treatment. For me it was Cancer cells all through my pelvic area in the peritineum . Surgery was not an option so was given chemo . That was over 5 years ago and I remained disease free until this Mar when a CT scan showed my lymph nodes were swollen. Tomorrow I will get results of last weeks scan which will determine when to start treatment. If they have not got any larger I may be asked to wait a while before treatment. In the beginning I was told to treat this like a chronic disease . There is no doubt it was difficult to change my thinking from cure to chronic but chronic does not mean all hope is lost. However that does not mean I won't turn into a blubbering mess tomorrow if I am told I must start treatment immediately. Your mother is so lucky to have lovely daughters who are giving her loving care. Also as someone else has said here new drugs are being used more and more. Give her a hug and tell her all the good news stories you have read here. Take care

    XXX

  • I cannot convey how much your wonderful replies have boosted us today - you are all remarkable women and I'm in awe of you. We only saw the consultant yesterday so it was very raw when I posted this at 3am this morning! I hoped that one or two people may reply and give us some insight into life "managing" this horrific disease but you've collectively given us so much more. By openly sharing your experiences (which I'm sure isn't easy) you've given us back hope and positivity. Things don't seem quite as desperate and tragic as they did this time yesterday so thank you all so much for your support, advice and best wishes for mum. We've spent the day reading all your replies and getting our heads around everything. Mums specialist nurse called today too and we are seeing her oncologist next Tuesday so thanks to this post we will go prepared with a list of questions. I'm so inspired by you all and will ensure we follow your lead and don't let this disease beat us! Thank you again for pulling us out of our pity party and for all the love and positivity you've sent our way. I'm sending lots back to you and wish you all the luck in the world with your individual battles.

    Kerry xxxxx

  • Hi Kez

    I am sorry but do not be too downhearted.There are lots of treatments to keep this disease under control.I am about to start more chemo , my 7th regime so far . I am hanging on to the hope that one day soon they will come up with the wonder drug that will blast this disease to kingdom come!

    Sending healing hugs to your mum and all the wonderful ladies on this amazing site. XxGeorgie

  • HI Kez, mine is also manageable since 2011 so as my onc said its like bp, you take meds to stop it blowing up like a pressure valve. So since then had one more chemo regime and a rt treatment. I feel okay that way at the moment, my last scan was stable. I have pain but it seems to be from a trapped nerve so getting physio for that. I wish you and your family and Mum well and look you never know, drugs are improving and as long as we can keep going its the main thing. Since 2011 have met my grandson, had a wedding earlier this year so life is good

  • I like the analogy with bp meds - it's a pity our meds are so strong, but as you say they stop things blowing out of control! I'm just trying to get my head round the 'chronic disease' thing. It's tough but do-able.

  • I agree with you, it is a hard fact to take in, I was floored to be honest when it was said to me. I guessed I had recurrence but my gynae was slow to do ct and my 125 was normal. So went to rheumatologist and he ordered mri and that showed disease was back. I got my scan then and went to gynae and referred to Onc. The Onc told me as it was and I was gobsmacked. But I am here five years later, kicking up the dust for better services for us with that illness and also more awareness. Since then, my onc in 2013 again told me it was back and it was best to treat before if blew up using that analogy. I am living with OC, that I know. Last scan was stable and have check up in about a month. I try to take breaks etc and live as normal as possible. You will come to terms with it at your own pace.

  • I have only just seen your post, as I have been away on holiday for a few days. I was diagnosed in 2008, & have had recurrences. I have had surgery which included hysterectomy at the beginning. I've had 2 types of chemo & 3 types of hormone tablets. One tablet worked for me better than the other 2. I've just started trying monthly injections. And I've been told there are more options, including more chemo, which will probably be next. I assumed in the beginning I wouldn't have long to live, but it's been 8 1/2 years so far & counting.

    Di

  • Hi, I was diagnosed with 3b high grade serous OvCa in June 13 following and surgery and treatment was NED. Unfortunately mine was back just 8 months after completion of chemo. Good news was it was small in 3 lymph nodes. Surgery was not an option for me either. I went on watch and wait and continued on this until Feb this year when I fe!t I had to start treatment again. Fiinished it on Tuesday of this week. I hadf holidays to Spain, Italy, Krakow and London during my W&W and just got on with life. I hope your mum will be so fortunate. Ann x

  • Hi ladies,

    Thanks so much again for all your wonderful replies, it helps so much to know we're not alone. So a bit of an update for you - we saw the oncologist today who I felt was very matter of fact about the situation - her first question to mum was "do you want chemotherapy?" which floored us all! She talked a lot about quality of life and made us all feel quite depressed about the situation but I guess she sees people like us every day of the week. She also told us that Avastin isn't an option as it has been removed from the approved list for reoccurrences, instead she is recommending mum go back on Carboplatin but this time with gemcitabine as mum is allergic to Taxol. Does anyone have any experience of this combination?

    As the cancer has come back after 6.5 months I'm concerned that carbo isn't the best option but it was the only one she put on the table. She didn't seem to know anything about hormone therapies and because mum's BRCA came back negative she's not eligible for the clinical trial they are doing at Derby.

    She has said that she's happy for mum to delay treatment for a couple of weeks so that we can have a holiday first. I'm a bit concerned that this delay may give the cancer an opportunity to get more advanced but she didn't seem to think it would be a problem as mums lymph glands are still relatively small (1.6cm). It will be fantastic though to go and create some memories and get mum a bit of R&R before chemo starts.

    So we are a bit downhearted this evening, but we'll pick ourselves up tomorrow and get a holiday in the sun booked before we start back on the chemo roller coaster next month.

    Hoping that you're all well and sending you lots of love.

    Kerry

    Xxx

  • Hi Kez15. My mum has been through a similar experience and was diagnosed 3c at the end of 2013. In Oct 2014 at first three month check everything seemed great and, like your mum, CA125 at 14. But, bombshell, in Jan 15 - recurrence. It's such a shock after being given the "all clear". Mum had 6 Caelyx and seems steady and had her last Caelyx on 21 July 2015. She has had three monthly checks and been put on 'watch and wait' and that's just over a year now. During a CT scan at some point over the year, she was told she has a small tumour close to her pancreas (alarm bells!) and one near a lymph node. She had a CT scan on 23 June and is still waiting for results. I really want to ring the hospital but mum hates me interfering so it's difficult. I also live over 200 miles away which is hard. So, be strong for your mum and try to encourage her to be positive. My mum always has been and I'm sure it helps. So many positive stories and lovely ladies on this site. It's been so helpful for me. Thinking about you. Jane x

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