My journey continues... POSNOC Trials??

Hi ladies. Well , had my mastectomy and reconstruction 2 weeks ago . All went well and am pleased with the way it went although obviously am still feeling bruised and tender and a bit tired. However had results yesterday following the removal of the sentinel node during surgery and unfortunately this showed traces of cancer for which I am now going to need further treatment. Needless to say I was a bit floored yesterday and couldn't take in all the information and options. Everyone was great and have given me time to take it all in before deciding. Further surgery under the armpit to remove further nodes is one option( which I don't really fancy) and obviously chemo and or radio therapy ( will know more about this after consultation with the oncologist ) . Another option though they have offered is a trial running called POSNOC. This looks at treatment to the armpit following surgery. I wondered if any one else has heard of this or even participating in it.? Would be grateful for anyone's thoughts. Wishing everyone a good day Karen xx

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  • i was offered this but decided against it. i had 4 nodes removed. 2 were clear 2 had speckles in them. i decided against it as your at a higher risk of lymphodema. you need to way up all the pros and cons. take your time and good luck xx

  • Thanks, certainly will look at all options. Best wishes to you too xx

  • Hi Karen,

    I wasn't offered a trial but my experience is

    I had a sentinel node op before my mastectomy and it came back one of the 2 taken had cancer cells in. For me there was no other option I couldn't not have a full node clearance as even though I knew I was having a mx and chemo etc I wanted to be certain (or as certain as I could be) that it hadn't gone any further. Luckily for me none of the further 19 taken had any cancer cells in. This I found out after my mx and the relief was so immense I can hardly describe it. Was the best day in a hard 6 months. I still had chemo and radio to get through but it provided me with such hope that for me it was worth the chance of lymphodema.

    Now a year after surgery my arm is ok, still sore under it but I have an expander implant that needs replacing with a permanent one so hopefully it will feel better then. I play netball and think it helped with movement etc.

    Sorry, just realised that doesn't really answer your question. Is a tough call and the pain from the anc was the worse pain of it all so far. So wouldn't recommend it from that perspective but the peace of mind, for me was totally worth it,

    Good luck with whatever you decide,

    All the best,

    Nix x

  • Hi Nixh, thanks for your reply,. I too had the skin sparing mastectomy with the sentinel node biopsy and then immed implant reconstruction. The node result came back with traces of cancer, hence all these descisions ! I totally understand your reasons for surgery, and may well , for the same reasons choose this route . Even on the trial you may still be chosen randomly to receive surgery . I have appt with the oncologist on 16 th to discuss chemo etc and the head of the trials are getting back to me with further in depth info. It's hard isn't it, on the one hand I just want to get on with it and get rid of this cancer, on the other I don't want to rush into a wrong descision. This I am sure is something we all face. Anyway thanks again and wishing you well with your own recovery. Karen x

  • I think in my head, Karen that "trials" = unknown and for me on this wonderful journey (ha!) I needed definite not maybes does that make sense? The onc will help you though, I was borderline for radio but my onc was very keen for me to have it and explained why very convincingly. Hope your appt goes well xx

  • I had 11 out of 12 positive nodes (this was over 5 years ago) Fit and well today. Had the nodes removed which was very straightforward + chemo (pretty gruesome). Suffered no loss of movement in my arm and as long as I do minimal stretching it doesn't feel much different from the other side. Nothing to worry about as long as you are fit and well and keep up the exercise. Surgical techniques are vastly improved these days.

  • Thanks so much for your reply . It's hard, in a way , when you get choices knowing which way to go. I still may go for the surgery option , like you I am otherwise fit and healthy and like some other ladies have said it is peace of mind that the nodes have been removed. I have an appt on the 16 th with the oncologist so am hoping I may get some further info then regarding chemo etc. Meanwhile I think I will speak again to my breast care nurse . Wishing you well. Karen x

  • Hi I have had a mastectomy and will be having chemotherapy and radiotherapy..I had 2 ultrasounds to my armpit that showed my lymph nodes were clear but when 4 were taken out , 2 were showed to be positive...I was also asked to take part in the POSNOC trial. What I don't know is whether the cancer has spread to other nodes and this would make a difference to my decision...if it has I would just want to get rid of it..how would I find out apart from having all taken out ( which is not what I would want unless had to) and ultrasound clearly doesn't show this up always? I too am very unsure and confused to decision.... If I go for the trial I may end up having radiotherapy or removal which might not be necessary? Aargh!! 😣

    Is anyone else in this position?

    Lynne

  • Hi lynne. I know of its hard isn't it. Since my post I decided to go ahead with the chemo leaving the node removal decision until I'd finished . Well that time came and I was still unsure but after much discussion with oncologist, surgeon and Bcn I decided to go for the node removal and I had total ancillary clearance 10 days ago. In the end I needed peace of mind that there was no cancer left. Thankfully my results have come back and all was clear which is great news . ( although part of me then thought ...bugger could have got away without the op) I am hoping that I may not need radiotherapy but have meeting on Thursday so will know more then. It seems they have not had enough positive results yet from the POSNAC trials to warrant not recommending surgery but then I suppose if we opt not to go on the trial they never will ! In the end I went with my gut feeling and advice from the professionals. Good luck with your treatment xx

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