I completed chemo in Nov 16. Since Feb 17 my CA-125 has been on the rise. Today it is 434. Apart from some constipation I feel really well. I just wish I had some idea of when im likely to start treatment again.

My team are saying that they leave you until symptoms begin - but surely then as ovarian cancer is "the silent killer" we are risking it spreading to vital organs?

Anyone have any experience of how long until they started 2nd line?

11 Replies

  • In my case my symptoms hit hard and fast - my CA125 was only 30 at diagnosis last year, went to a low of 13 at chemo 5, then 14 chemo 6; 21 at three month check up and up to 39 8 days later . No symptoms so on watch and wait. less than one month later I had MASSES of symptoms and my CA125 was 2900 which continued to rise to 5400.

    The consensus is not to start treatment on CA125 rise alone without symptoms as it doesn't improve survivability and can cause quality of life issues.

    However if you've had a scan and there are sign of cancer recurrence it doesn't make sense to put treatment off.

    Do you definitely have signs of cancer or is it 'just' the raised CA125?

    Clare x

  • Hi Clare, that's what I wanted to say but you put it over so much better. Cindyxx

  • My oncologist told me that there is no benefit to rushing into chemo at first sign of recurrence and I tend to agree with her. I enjoyed 18 months of recurrence, having holidays and good quality time with my family. Chemo is tough and I personally could not have faced going back on chemo 8 months after I'd completed it first time around and with second line, as I was still left with tumours that would mean starting straight into another one! Quality of life every time in my book. Chemo when the time is right! Ann x

  • Hi Ann, maybe that's where I am going wrong I have had very little breaks from chemo. I am also the biggest, what if, person. I would b worried sick if I left it that long. I am happy for you it seems to work but I am a, nip it in the bag, type of person.I am impressed with your attitude. The fact you are busy filling your life up with lovely things to do.

    When I had my last scan & they were explaining where it was. My mind was saying oh my God it's gone crazy again in such a short time. Knowing chemo was starting the next day no way was I going to stop it. I am having problems spending a penny because the cancer is pushing on my bladder. When I wiped my self I could feel painful lumps that's how far down the cancer has gone.

    If I did leave chemo for a longer time could it entra my organs?

    Any way wishing you all the best take care Cindyxx

  • Hi there, have they given you a ct scan to see what's going on? It's not only the ca 125 but there other things that they look at which should give them an idea what's going on.

    I know some ladies on here don't have symptoms & rely on their ca 125 & ct scans.

    I was shocked when mine came back for the third time the only symptoms I had was pain which hadn't left me since being diagnose 2 years ago. I had constipation & what I thought was a water infection. It turned out to be the cancer is around my bladder.

    I am sure there will be others on here that can suggested what you should do next. There is a help line on here it might be an idea to call them. Take care Cindyxx

  • thanks both.

    Symptoms are constipation and tiredness. I had an MRI in March which was clear (and CA-125 was 119 then). I am scheduled another scan end of May.

    I feel so well though it just doesn't seem fair. CA-125 was 5500 at initial diagnosis last year and ath that point I had 7 litres of fluid drained. so I guess im someone whose marker runs high before i really feel the symptoms.

  • I'm guessing that there's a difference between the initial discovery of ovarian cancer and early treatment and the treatment procedures once the cancer recurs.

    I think you already have one symptom which is constipation so if it worsens, or you have new symptoms, ask for the scan to be brought forward.

    All the best!

  • Hi lovely,

    If I was you I'd get back to the Onc and not leave until I was given a CT scan. Ok as the other ladies have said CA125 isn't absolute however going from x to nearly 440 would be enough of an indication they the beast is very likely back! My special person's CA125 went from 10-1000 in 3 months the 1000 was wrong and actually turned out to be 598 however because of the rise she had a CT scan and is now back on chemo. PLEASE get a second opinion! Xxx

  • I was told the same thing as you, last June, when my scan showed some tumours still growing. Even more worrying, I was told I would have no more scans for a while as I'd had "too much Radiation". I found that Scary, knowing things were growing and had expected more chemo. I, too, was told chemo must wait until my symptoms get worse. When I said about OvCa being known as the silent killer and couldn't really understand why I was being left without treatment. It was explained to me that things are different after the first line of chemo and nowadays they have realised it's better to go as long as possible without it as it is so toxic and quality of life has to be taken into consideration.

    I have just had a scan and am about to start my third course of chemo next week so I'm lucky enough to have gone about 10 months. However, I have gone ten years since diagnosis. My first Oncologist believed in people having no scans or CA125 tests until really necessary and looking back - I am pleased now that he took that stance. I wouldn't have done a lot of the things that I have done, had I had more Chemo earlier.

    Keeping my fingers crossed for you, Solange 😊 Xx

  • Hi, I completed my first line treatment in December 13, by August 14 raised CA125 prompted a scan which revealed it was back, although small. I went on watch and wait and remained on it for 18 months. I worried that I wouldn't know when I needed treatment but I actually did. At about 17 months I started to get niggling pains and also started to get tired, was having to lie down every day for a sleep. Hadn't had to do that over the previous months, I also noticed that my back was very sore. I phoned my CNS, she arranged appointment with my oncologist and after going through all my symptoms she agreed it was time for me to start treatment. She organised for me to have an up to date CT scan and about a week later I started treatment.

    My second line treatment didn't clear it all so I have been on watch and wait again since I finished chemo in August 16. I had appointment with oncologist last week and although there has been some new spots and Donne growth on what I had been left with, the largest is 2.5cm so still small. For the meantime I'm happy to remain on watch and wait, as is my oncologist. I'm going to New York in August and I don't want to miss out on that! She is happy for me to go. I'm confident that once again I will know when it's time for treatment.

    My CA125 was over 600 when I started second line treatment. I hadn't a clue what it was all through my watch and wait, my oncologist had said to me that there was only one way it would be going and that was up. Better not to ask as it can mess with your head and cause unnecessary anxiety. I took her advice. I saw her two weeks ago and CA125 was done, I haven't asked and don't intend to.

    Ann xx

  • That is a very interesting reply Ann, and the deferrance of second line chemo is one I will certainly discuss when I go for the results of my recent scan in a few days. Two months ago I had a scan which showed small nodules starting to grow in my abdomen, along with doubling of ca125 each 3 weeks since first line chemo finished Dec 16 - but told there was no advantage to rushing into treatment....

    Hopefully I can delay further and we can get out to Canada early June to see our daughter and two small grandkids...

    Just in limbo land at the mo.... janet🌈

You may also like...