Debulk or not?

Complete hysterectomy and removal ovaries and tubes following a decision for a look see about a waterfilled cyst in the womb near to the fallopian tube that kept changing shape in 2007. Difficult op due to adhesions, but surgeon was happy to say no cancer.

2 weeks later hystology proved him wrong. High grade serous epithelial 2a of fallopian tubes diagnosed!

I queried about the lack of debulking but the gynae/oncology surgeon said he did not think it would make much difference. Should have questioned it but probably a bit shell shocked. So here I am now 5 years down the line and chemo every year with spread to omentum, liver and spleen and some other nodes.all be it small but many deposits and I do wonder what if? Cant change it I know, but curious.

Has anyone else kept their omentum ? And how are you doing/

Am relatively pain free bar small amount mainly under right rib.

Just curious

Sue

6 Replies

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  • Hi Sue, sorry to hear that you're having to go through all this worry about what should have been fixed at the time. It must be so frustrating. I had my omentum removed when I had a complete hysterectomy, 9 years ago. My surgeon said that there were some some small traces in there that he thought he could see, so he removed it. I asked what it was, never having heard of that bit of my anatomy before, and he said it is a fatty layer but it does a good job of mopping up any stray cancer cells. It may be worth ringing the Ovacome helpline nurses (08453710554), to query if there are any further steps you can take, or maybe request a second opinion as to further treatment. (Sorry if this is stating the bleedin' obvious!) ;-) There may be some more they can do, though, to ease your concerns, and there are new trials and treatments coming along that may fit your circumstances.

    It's a good sign that you're pain free and I'm sure the monitoring from your hospital is keeping an eye on things.

    Al the best

    Love Wendy xx

  • Hi Soapsuds,

    I had my omentum removed, and as you know, the cancer didn't go with it. I think there was some left under the diaphragm though which they could not remove, and chemo was supposed to nuke. But you know how that one is going...

    Love Lizzie

    X

  • Hi Sue! I had tumours I could feel in my omentum at diagnosis, in fact it was how I knew the 1st chemo was working as I could feel one shrinking. I had the omentum removed half way through the first round of chemo but I still had a recurrence a year later in the pelvic area, that has been removed but, no doubt, the b****r will be back somewhere else. When it is so extensive I don't think what they remove in the first place makes very much difference.

    Concentrate on enjoying life now! "What if" is a waste of time and energy!

    Good luck

    Love Margaret!

  • First of all, you could not possibly question a specialist's opinion, you did not have the knowledge. Don't blame yourself.

    I wonder how you could be staged without biopsies of lymph nodes & the omentum, etc.. Usually these are done during surgery.

    I'd agree with Wendy, call the Ovacome nurses and consider a second opinion. Recently in the US secondary debulking surgery is becoming popular, with good results.

    Good Luck.

  • I have OC and spread to omentum and there is some behind my liver too, I have having debulking in just over 2 weeks time. The surgeon said he doesnt take surgery lightly and wouldnt 'waste' theatre time if he didnt think there was benefit to it for me so it is going ahead even though they cant get all of it. I have to have faith in them that due to my age (35) and fitness, I have vitually no symptoms thank god, I get bloating if I eat certain foods but thats it. I too can feel the tumours and will be glad that after surgery I wont be able to feel them anymore but am aware that there will still be C in there. Got to have faith that chemo and the lifestyle I now lead (juicing, apricot kernels, wheatgrass daily) are all factors to aid my recovery and hopefully keep this thing sleeping in the rotten den that it lives in.

    My surgeon said 'take advantage of the medicine of 2012 and if that means the surgery and the chemo then grab it all. His only tip for me was to 'stay sane' and thats the thing that we all have to struggle with no matter what treatments we have, its the mind thats the enemy. I try to say to myself that Im glad it isnt something like motor neurone or MS, things that dont really have treatments. 'At least' (hate those 2 words) cancer has a lot of drugs that are already here and new ones coming through all the time so for that we have to have hope. You are sooooo not alone, we are all living through this together, its dreadful, we all know that but I have to remind myself that Im here right now and the body wants to live, it wants to survive, just like a plant, give it the nutrients and it wants to succeed, just like me and all the other lovely ladies on here, its not a case of 'fighting the fight' its working with the docs and our families to beat this horrible thing. If we cant beat it then we have to learn to live with it and the mind is the one thing to try and control, I wont let this C dominate my life, it has done that already and it sure as hell isnt going to do it 24 hours a day-I wont let it-it can stay in its cage.

    Sorry for the ramble but Im having a 'good' day today and feel very put out that this thing is inconveniencing my life and all of your lives too-how dare it!

    kate x

  • Thankyou all. Don't worry I have lived with the beast too long to let it get me down, hoping to tame it! I have a naturally curious mind, in truth as do we all.

    I lve life to the full, more than before even sometimes when I shouldn't. I am lucky I have a wonderful husband who has a terrible sense of humour and four gorgeous sons. I'm 65 and had agreat life and career. I cannot moan really. Just naturally nosey!!!

    Suex

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