Hi everyone, I’m struggling to make a decision, realise it has to be my own choice but any views or experices would be good…
I had a lumpectomy with 3 nodes removed, 1 tested positive. I have been offered to take part in the POSNOC trial, or not. I’ve pretty much decided not to as feel like I’d like to make the decision myself whether or not I have full clearance. I’m having chemo and radiation, surely those would kill anything left? I’m really worried about getting lymphodema, I have young children, and an active job that I love. I’m only 34. But at the same time also a bit of a worrier and would like to know they got everything out. I really don’t know what to do. I have until Thursday to make a decision.
Hi just to say I know exactly how you feel. I had a mammoplasty where they removed 2 nodes, one was positive. Went back for second surgery to have margins shaved and a full clearance but they forgot to do the clearance. I am only a week post second op and will get my results on Wednesday. Surgeon said if margins werent clear he would have to do a mastectomy and clearance at the same time. If margins clear then should I have clearance anyway. Like you I am terrifed of lymphodema as it is my right side and I am right handed. Surgeon said chemo would clear any nasty cells left but bcn then said that I would have to live with not knowing. I suppose I am worrying before I have to make decision and it may be that I dont have a choice but I just wanted you to know that you are not alone. I am dreading the thought of further surgery but I want to get this stage out of the way too so I can commence treatment. A friend of mine who has just gone through this said she would definitely want the clearance to get it all out but I am not sure either. She advise me to ask the surgeon what he would do if it was his wife or daughter. Let me know what you decide. Sorry not been much help! Good luck with whatever your choice is. What is the POSNOC trial? xx
Hi Laura
I had mx and 3 nodes removed, one positive and I was also offered the POSNOC trial. Have you been given access to information, including links to videos online which explain the trial?
If you decide to join the trial, you will be monitored very closely and there is the option to withdraw at any time.
Have you considered the option of saying yes to the trial at this stage? There is a 50% possibility that you will be randomised to the full treatment side of the trial, so you wouldn’t be missing any treatments but still be a part of the trial.
Whatever randomisation you are offered, if you are not happy with the decision you can withdraw but, by saying no now, you lose the opportunity to be a part of the trial on your own terms.
I have joined the trial and have been given the no treatment option, which means I am avoiding radiotherapy to my armpit. I am very happy with this decision even though I didn’t think I would be.
Good luck with your decision.
Thanks for the replies.
I found it an impossible decision, so after a confusing week I decided to let fate decide and join the trial… it was decided I wouldn’t have the clearance. So I meet with oncologist on Monday to discuss the next step.
My surgeon and breast care nurse said in my position they don’t know what they’d do either! She said if further nodes had been positive she would have encouraged me strongly to have it but as it was just the one she was happy with my decision to let the trial decide.
I am so thankful I have just found this thread! I have had a WLE and sentinel node biopsy tho weeks ago and got my results yesterday. They found cancer cells in one of the three nodes.
Now I have been offered a range of lymph node treatments to choose from: no treatment, clearance surgery, radiotherapy, the POSNOC trial or the OPTIMA Study trial. I feel completely overwhelmed and am more scared about making the wrong decision than of undergoing the treatment! Thank you for helping me feel I’m not alone.