Recurrence

[KimLJ]

Hi everyone. I was originally diagnosed 4 and 1/2 years ago, 3c high serrous ovarian cancer. I now have my first recurrence. I have ovarian cancer cells growing “over” my liver, not “in” it. Has anyone else had this? It’s all systems go for surgery in London, where I had my debulking. Just wondered how people have got on with recurrence surgeries? Thanks.

[OrdinarySoul]

Hi, I’m so sorry to hear you have a recurrence. I don’t have any experience of recurrence surgery (yet) - I finished my treatment earlier this year and am currently getting used to the monitoring time frame of waiting for 3/4 months in between seeing my consultant. Can I ask how they found your recurrence?

It sounds as if you have a treatment plan in place and I wish you all the best with your surgery and beyond.

I’m sure there’ll be a load of people on here who can tell you their experiences of surgery for recurrence and I just wanted to reply and send you some love. Take care x

[KimLJ in reply to OrdinarySoul]

Thanks for reaching out. My CA125 got higher. They repeated it and within a week it had doubled. I had no idea/symptoms. But a month later I have a nagging pain in my liver area/back. So I would have known one way or another. Take care and live well xx

[2016Mags]

Hi KimLJ, on my third recurrence now but on my second surgery they took out my liver and shaved it they told me, and it was a very successful surgery ( also removed cancer from my abdomen…Best of luck, Mags ❤️

[KimLJ in reply to 2016Mags]

Many thanks. I hope your well at present xx

[Lizz49]

Hi Kim,

I’m sorry to hear of your recurrence, it’s tough to accept after so long clear. I was in a similar position as I also recently recurred after 5 years, but 3 months ago I had a secondary debulking surgery and happy to tell you I’m NED again.

Mine was low grade and low volume recurrence but did involve a bowel resection and to be honest the recovery from this op was harder than 5 years ago, but my oncologist and surgeon both told me that would be the case. They are obviously going in through scar tissue so the incision is very sore and the muscles too but they give you tons of pain relief and things improve as the weeks pass. Other than some aches and pains now I’m pretty much back to where I was which I could barely envisage 3 months ago! But our bodies do heal quite quickly thankfully. For the first two weeks I was pretty much in bed but started to shuffle round and slowly build up my activities. But take things easy and no heavy lifting and try to rest as much as you can.

I hope your surgery goes well and do let us know how you’re getting on,

Sending hugs

Liz Xx

[KimLJ in reply to Lizz49]

Thank you for your reply. Very informative and just what I needed to hear. I will let you know what happens.

Hope your living well now, hugs to you.

Kim xx

[Irisisme]

Hi Kim,

I also had lesions on my liver. On the liver ‘capsule’, but not in my liver and these lesions were removed with debulking in Jan 2017. I was never NED but my liver was ok until October of last year when a routine CT scan showed multiple small lesions now in every lobe of my liver. 4th line chemo have halted their progress so I’m now ‘stable’ (I’m as nutty as a fruit cake but the disease is stable !).

Basically, it’s a whole different ball game having cancer cells ON your liver, compared to having cells IN your liver- much easier to deal with. I’ve not had 2nd surgery so can’t say from personal experience anything about the recurrent surgery but I understand that scarring and adhesions can complicate things - but at least they shouldn’t need to go into your liver (you need an hepatic surgeon for that).

Just check that you have a surgeon who is good enough to deal with all eventualities once inside. Ask those awkward questions and look after your own interests. If you have any doubts ask for explanations, from your clinical oncologist and your surgeon - and seek a 2nd opinion if you’re not happy. You probably know all that but I just thought I’d remind you 😊

Good Luck and please do post your progress,

Iris🍀🤗

[KimLJ in reply to Irisisme]

Hi again. Update - I saw the surgeon and surgery in the 3rd of August. Followed by chemotherapy again. They have a surgery plan and they are going through my first debulking scar. They have hepatic surgeon on alert to help if required and it’s not when the junior doctors are on strike! So it’s just a case of getting it done now.

Kim 😘

[KimLJ]

Again-thank you for your reply. A lot of food for thought and some new questions for my surgeon on 3/7!! Just what I needed.

I will keep you updated.

Kim xx

[OvacomeSupport Partner My Ovacome Team]

Good morning KimLJ

Thank you for your post. I can see that several members of the forum community have shared their experiences of surgery for recurrent ovarian cancer, which I hope has been helpful.

Surgery for recurrent ovarian cancer is often referred to as ‘secondary surgery’. I wanted to let you know that Ovacome has an information resource all about secondary surgery for recurrent ovarian cancer which can be found here on our website: ovacome.org.uk/secondary-su... . This booklet explains what secondary surgery is, benefits, risks and current clinical guidance - and also includes a story from Lesley, one of our members who had secondary surgery in 2013. We can post this booklet to you, free of charge, if you prefer?

I hope this information is useful and that your upcoming conversation with your clinical team provides further clarity and reassurance about their surgical recommendations. Please don’t hesitate to contact us if you have any questions or would like to talk things through. We’re here Monday – Friday, 10am – 5pm, to help with queries or just have a chat about anything that’s on your mind. You can message us directly through this forum, email us via [e-mail] or give us a call on 0800 008 7054.

Best wishes

Annie – Ovacome Support

[KimLJ in reply to OvacomeSupport]

Many thanks for adding to the post and sign posting me. I will definitely read the leaflet for information and remember I can contact you if needed.

Kind regards

Kim x