Back on the merry go round :-(

Hi everyone

I posted around a month ago when my latest ca125 had risen to 52 so needed investigating. Have had a ct scan and a PET scan which has shown a small recurrence back of liver - 3.2cm in size. Bizarrely just feel relieved that there's no microscopic disease elsewhere - does that sound weird that I feel that? Just shows how this hideous beast affects us! Am seeing onc in 3 weeks and then will start chemo again! Sooo need to hear from ladies who have faced liver recurrences and come through the other side - it's only been 8 months since 1st line chemo of taxol and platin finished so am feeling really scared at what the future holds! Would they give me something different this time?

I feel well so they're calling this an incidental finding - scary in itself!

Any advice and positivity sooo welcome Xxx

12 Replies

  • HI Maz54, I am sorry you are back on the merry go round. I would imagine they will give you something like Gemzar which isnt really a hard drug. This was the most recent one I got plus Avastin and that has held the beast at bay so far. Look your 125 isnt up a huge amount, they might just watch and wait for a bit. I can imagine you are scared. Is there any Macmillan nurses or gynae liason nurse in your hospital you can talk to or maybe a cancer support group in your area. I have one and use it when the chips are down and I do find it beneficial. Try and relax and have a treat or two in the next few weeks before your see the onc. It is good to get out and focus on other things. Do keep in touch and let us know the outcome sending you best wishes

  • Thank you suzuki for replying to me. I just feel cross at the moment as only just seem to have picked myself up from the 1st round! I'm just trying and take comfort from other ladies threads who have faced recurrence and come through it with such amazing courage. At the moment just want it all to go away :-( xx

  • I know the feeling , I have had OC since 2006. I have had a few recurrences had few regimes of chemo and also one course of rt. Its not easy. It is hard to make it go away, in fact you cant. I try and take each day as it comes and do my best. Its very upsetting when you get a recurrence I have gone through it, you wonder how you can do it all again but somehow somewhere you do get the strenght to cope. Just hang in there. Get cross and shout and throw something but then settle down and try and cope as best you can, that is what any of us can do.

  • You're so right! Feeling a bit more upbeat this morning and the sun is shining which is a bonus!

    I guess it's not the thought of chemo again that scares me - I generally tolerated it pretty well last time and I intend to get myself in as good a shape physically as I can over the next month before I start - just wondering how chemo can get rid of something 3cm - it sounds large!

    Sorry suzuki to whinge - so admire you for doing this for so many years but gives ladies like me hope that we can live with and get through this. Thank you for taking the time to reply xo

  • Hi Maz54,

    I was struck by a couple of points you have raised. When I was first diagnosed in May 2012, my tumour measured 15 cm (there is a whole backstory to why I wasn't diagnosed earlier, which I won't go into now). My surgeon said the tumour needed to shrink before it could be removed and he could hope to get most of it out. I had 4 cycles of chemotherapy which reduced it from 15 cm to 10 cm. So after 4 cycles they decided to operate. So, 3 cm might sound large, but 4 chemos (carbo/taxol) reduced mine by 5 cm. I appreciate we are all different.

    What you said about being relieved that you don't have microscopic disease everywhere, but a localised recurrence, resonated with me too. I too received the diagnosis of my recurrence a couple of weeks ago, as a small localised area. A cyst 1.5 x 2cm in my pelvis. I am having exactly the same dosage per each carbo/taxol chemo cycle to treat this size, which did seem a little strange to me. I think it is natural and not bizarre or weird to feel relieved in some way, that there's not widespread disease, even if microscopic.

  • Hi greenpink - your thread raised some interesting points with me too! My original tumour also measured 15cm but ct was clear so I had it all debulked successfully before the chemo! You've given mehope ababout the reduction of the recurrence - not sure what regime they'll use until I'm seen again xo

  • Hi, just to say I have some on the liver also, about 4 I think, they don't tell me the sizes and some in the abdomen. Currently on carbo/Caylex. Had been in a trial and on watch and wait, ca went extremely high 12,300 ,before they even started chemo. Have never had a pet scan and when my ca was 52, was told, see you in 3 months ! From what I have read and experiences on the American site is that if the chemo is going to work it will clear it everywhere. So I am keeping my fingers crossed, it's two years since I had chemo but I just don't like the thought of liver involvement. Best wishes to you for your treatment. Trix

  • Thank you Trix for your reply - yes I've seen from ladies on here that watch and wait seems to be an option in some areas. I'm treated in Birmingham at Heartlands and Queen Elizabeth hospitals and they don't seem to adopt this approach - seems to be treat immediately before it has chance to spread its wings as it were! You've made me feel more positive Trix - just kinda want to crack on with it now xo

  • Hi Maz54, I got a recurrence 8 months after completion of 1st line chemo too. It had come back in the lymph nodes in pelvis and abdomen. At last appointment in June for results of latest CT scan I was told of 2 spots on my liver. I have yet to start chemo yet and am hoping and praying that I can hold off for another while. It will be a year on 20 Aug since I was told the beast was back. I hope you don't have to start chemo yet but if you do I believe they will change your drugs, at least that's what oncologist told me at the time. I dread having to start chemo again but I think I will get the strength when the time comes. With regards my liver, I have become a tad fixated with the whites of my eyes, keep checking if they are going yellow! Does anyone else with recurrence on the liver do this?

    All the best. Ann xo

  • Hi Ann - I've read your threads before so I know you're someone who hasn't started chemo yet. I think my team isn't an advocate of this but I guess there's pros and cons for all ways. I'm not too worried about chemo - just scared that it won't work! Am so fearful for the future but I know these feelings are normal when you hear those awful words of recurrence!

    Mind you I did laugh with you checking the whites of your eyes - I've started doing that too ! Xoxo

  • My fifth recurrence was a small tumour on my liver and we just watched and waited until my ca125 was approaching 75 then Iwas referred to a liver surgeon who said he could remove it. He managed to get clear margins around it so I needed no chemotherapy but he did find a tumour on my diaphraghm whilst he was rummaging around and removed that as well.I have been well for four years now with no recurrence ,the longest gap yet which is unusual but if you only have one tumour ask about surgery.It was quicker to recover from than chemo.Good luck,Viv.

  • Wow that's fantastic! 4 yrs free after a 5th bout! ! This wretched disease is so very unpredictable isn't it!

    Apparently surgery not an option as the tumour ( god I hate that word ) is on one of the lobes at the back so very difficult to access! I thought would ask again about surgery though when seen again - you never know!

    Thank you for your encouraging story xoxo

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