Not been on here for ages. Was diagnosed with stage 3 OC in Feb 2017 and had hysterectomy and full debulking in March 2017 followed by six sessions of chemo carboplatin/paclitaxol finishing in Aug 2017. Was great for 14 months seeing my oncologist and gynaecologist alternately every 3 months. I did note, however, that my CA125 kept rising every time I had bloods done. I asked my gynae why it kept rising - he didn’t give me an answer, only said that if it got over 30 they would give me another CT Scan. Which they did. I was diagnosed with a tumour on my liver at the end of October 2018 just prior to going on holiday. I asked if they couldn’t just cut it out but was told by my Onc. that they didn’t tend to operate on secondary liver cancer as (a) it was a big operation, (b) a long recovery time and by the time the patient was recovering it was likely to pop up somewhere else - great. She told me to go and enjoy my holiday (as much as I could) and that she would have my chemo organised for when I got home. They were going to give me the same cocktail of chemo as I had had in 2017, to shrink the tumour, and then a new tablet for ‘life’ to maintain the status quo.
Imagine my shock when I got home to find a letter stating that they had reviewed my case and in view of the fact that I only appeared to have the one tumour on my liver and that I was otherwise ‘healthy’ then subject to me having a PET CT Scan and it showing no sign of cancer elsewhere, they thought they should offer me surgery.
Two weeks ago today I went ‘under the knife’ and I have been back home since last Wednesday. Feel pretty grotty but all seems to have gone well.
What I am anxious to know is, has anyone else had OC which has then metastasised elsewhere, and then wonder if it can come back a third time? I don’t yet know if I need follow-up chemo to mop up any stray cells .
I would be really interested to hear from anyone in a similar situation.
June27
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June27
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Thanks Vicki, I thought that too - hence the decision to go ahead with surgery. It’s hard to think that this time two weeks ago, I was in HDU recovering from my op. I’ve been sore and very tired but sure it will all be worth it.
I am actually in the UK so not quite sure what the next course of action will be. Before they decided to offer surgery the plan was chemo and then a tablet for life. However, they now tell me that if I have had surgery they would not give me that tablet. I need to wait for histology to confirm whether this has been a Primary Liver tumour or (as everyone seems to suspect) that it is indeed a metastisis from the OC. I think if I need chemo again, I may opt for the cold cap this time as my son is being married in Seville in August and I don't really fancy wearing a wig in 40 deg heat !! Another girl I met who had had OC did a lot of research before her chemo and decided to go with the cold cap and never lost her hair. She has just been given the 'all clear'. Oh, to ever get to that stage ! Onwards and upwards though. Hope your treatment is going well and you get good news.
If this is indeed OC, please beg borrow or steal to get on a PARP inhibitor.
Best wishes,
Laura
Hi June,
I was first diagnosed with OC in Aug 2015. After surgery I had 6 months of Taxol, Carboplatin & Avastin, followed by six months on Avastin only.
In Aug 2018 I had a reoccurrence in my liver, two lymph nodes in my abdomen and a small tumour in my abdomen. Since then I’ve been on Carboplatin, Gemcitabine & Avastin. I’ll be having a CT soon because I’m half way through the six months cycle. Oncologist mentioned the possibility of an operation post chemo but everything depends on the scan. Hopefully I’ll have made some progress!
Best of luck with your recovery. Give yourself plenty of time.
I recurred 3 years after the ‘all clear’ and had a solitary tumour in my pelvis pushing against my bowel so had temporary stoma and lengthy surgery as it was quite deep.
Recurred again two years later. Pelvic tumour but mets to peritoneal area, stomach rectal muscle, deep cervical lymph node (neck), liver. The liver is 17mm but the jury has always been out on whether it’s cancer or fatty tissue.
I finished chemo October 2017. Have had no further treatment.
We are all so different with how OC presents itself makes treatment difficult for recurrence
It sounds to me as if you have a good team wishing you a speedy recovery
I have had five recurrences and four surgeries as my tumours tend to come one at a time.Last surgery was2011 after monitoring liver tumour for a year.Luckily for me they didn’t know another tumour was lurking in my diaphragm until they opened me up so I had that removed as well.Recovery was about 6 months.
Wow. You certainly went up and down. Glad they were able to operate. I was in a similar situation but not quite as yours. When my CA went from 11 to 22, they gave me cat scan. Seems a 5mm nodule set up camp adjacent to my liver. Too small to operate and too big to ignore. I have 6 sessions of Carbo/Taxol and then went to Zejula for maintenance. The results on the scan regarding the nodule read: "barely perceivable". That didn't mean it was gone, but, it was tiny. Whatever...I'm always so overwhelmed with information and bridge jumping anxiety.
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