Ca125 falling but no surgery planned

Hi all, just an update on my sister. CA125has fallen from 390 to 177 after 3 cycles of chemo. However due to lymph nodes involvement the decision is to have the remaining 3 cycles and then review to see if further surgery is an option

If it's not then what are they likely to do, watch and wait or more chemo. Lymph nodes have reduced in size by 50% but oncologist said scan still showed evidence of disease that is not possible to remove with surgery at this point in time.

14 Replies

  • and who is your surgeon? surely it's discussed by the team not just oncologist.

    if surgery isn't an option then you are most likely to have regular scans to monitor it, as well as blood tests

  • I think this was a joint decision at the MET. A further review will be held after the next 3 cycles. One of which is today so two more after this.

  • MDT

  • I was told they are not going to operate on my pericardium and in my head it sounded like its inoperable. It was very very traumatic. I asked for referral for Nanoknife procedure and got it but it was 2 weeks before my debulking surgery so was really no point even going for consultation.

    months later on another forum, I've read about woman who's had surgery done on the very same place to remove nodule.

    now I'm not sure if I heard it right from my doctors....was it really inoperable, or was it not required as chemo would have cleared it (eventually it did!) or did they think the risk overweights the benefits, I was having a mammoth of a surgery to recover from already and so on...

    bottom line is I have NOT seen the cardio surgery specialist for consultation on this. i have NOT been informed fully and I don't think they heart surgeon was even part of MDT. or at least I wasn't informed about it.

    hence my question - who IS your surgeon? gyno? breast? are they the right person to operate on you?

    subbottom line - safely delaying surgery is still not a bad thing :)

  • It's my sister and she has a gynae oncologist who has operated but was only able to remove her momentum as cancer was evident in small areas (likened it to a pearl necklace) across the small intestine.

  • there's gyno, there's oncologist :) operates gyno surgeon. I don't know if he's the right person to operate on lymphatic system

    omentum is almost always affected for some reason.

    PS typing while having lunch so pardon for horrible grammar :)

  • Hi Seavccg, the fact her ca 125 has come down that's great.

    I was told at the start no surgery just chemo after 6 chemos I was given surgery. Everyone is different & as hard as it is you have to hope the rest of the chemo will get your sister in a better place. One thing you must do is keep asking questions. If they still say no surgery after the 6 lots of chemo it might be an idea to ask for a second opinion. I remember my daughter in law kept nagging the oncs, when will she get surgery?

    I do know a few ladies with oc that haven't had surgery but they excepted the dicision & never asked again. I am not like that I felt surgery was more mind over matter. If it was taken out I would have a better chance of fighting this.

    Good luck let's hope more chemo will get your sister in a better place for surgery. Keeps us up dated take care Cindyxx

  • From reading, I gather the poster's sister has already had her surgery. The surgery she is wondering about is for lymph node removal only. Ann x

  • Hi Ann, I see I have alway struggled with reading & writing & I have misunderstood the problem. Thanks for that I will try & take a bit longer next time at reading questions. I can blame it on my chemo brain & dyslexia. Hope you are doing as well as you can take care Cindyxx

  • She has lost a fair amount of weight and today's chemo was nearly halted due to the weight loss but they have adjusted the dose and given a bag if magnesium first to fend off joint pains. It's so hard as she doesn't really want to eat but her weight loss is marked and I am suggesting meal replacement drinks if she can't face eating.

  • Hi Seavccg, yes do ask for replacement drinks. Your mum's low weight should be enough for them to give her them. They don't taste brilliant but will give her some goodness.

    If the hospital say no go to her GP mentioned her low weight or phone up her surgery & get some ordered. If they still say no you might need to make a big fuss. My old surgery was very poor & everything was a fight but much happier now.

    Take care Cindyxx

  • Hi, firstly, your sister has already had surgery by an experienced gynaecologist surgeon who most likely specialises in gynaecological cancer surgery. Please do not worry about his/her skills. Surgeons go through years of training to do their job with lots of assessments and exams along the way over all these years.

    An oncologist is not a surgeon. Oncologists come in two forms, clinical oncologists who deal with radiotherapy and medical oncologists who deal with chemotherapy. There are a lot of them within hospitals dealing with cancer, as they all tend to specialise in a different body area.

    I have lymph node involvement. Your sister still has 3 more cycles to get, they have already reduced In size by 50% and hopefully they will continue to do so for the remainder of her treatment. I had 11 going into 2nd line treatment, the scan at the end of treatment showed that 6 had gone, 5 were still there BUT they had reduced in size by more than 50% from the half way scan and they were all tiny now. That was August last year, I have been on watch and wait since then. My CA125 had been 640 at start, it was 23 at end. They were very happy with my result. Once I got over the disappointment that I hadn't got back to NED, I was too.

    Your sisters feelings on the matter need to be taken into account. Let her be foremost in any decisions. Please do not try to persuade her. Personally, I could not have faced jumping straight into another chemotherapy regimen straight away, and from what you've said about your sister's weight loss, joint pains etc, I can't see her wanting to face it either. A break from chemo once she has completed this line of treatment will most likely do her the world of good, give her time for her body to recover and let her gain strength both in body and mind before she has to go through it all again. I am living life and enjoying doing so having had holidays away. I have a holiday to New York booked, I fly onb 21 August, and I intend to be on that flight!

    I wish your sister the very best of luck. You remember to take care of yourself too as a cancer diagnosis affects everyone in the family in its own way.

    Ann xx

  • Sorry, I also meant to mention that it sounds like she wouldn't be fit enough for more surgery from what you've said also. xx

  • She's fine. She only lost 2.5lbs in 3 weeks has had her chemo and is feeling ok.

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