Hi - I have just been DX with secondaries in nodes in my neck, and chest plus lung mets plus a node in my armpit. I had WLE with full node clearance in Sept 2010 then MX in Oct. chemo then radiotherapy to chest & supraclavical nodes (neck). I now wish to question why I still have a node or nodes in my armpit after they were supposed to have all been removed. I did comment when the ONC told me but was in such a state of shock at the diagnosis I couldn’t take anything in. before I start asking questions formally I just wondered if anyone else had this experience at all??? - surely if they cannot guarantee to remove them all we should at least be told or they should check as of course this now makes me wonder if it has spread from there even if it is unlikely. I’m not at this point looking for someone to blame & accept the situation BUT I just want to know how common this is & to question about the information we are given as patients as everything I read says full clearance - ALL the nodes are removed!. Thanks Jo
Hi Milllykins, firstly I am so sorry to hear of your secondary diagnosis which is what we all dread and for we the thing that keeps my cancer very much at the forefront on my mind.
I am no medic and it might be worth phoning the helpline here or speaking to your BCN but when they remove lymph nodes and give you a full clearence its because it has spread to the armpit and the nodes are where the cancer cells migrate to. I think we all have a different number of nodes. I had 24 removed, 9 of these were affected with cancer - I do know ladies who have only 9/10 removed as that is all the surgeon could find. I think under your armpit is like a tree and the lymph nodes hang off the branches and the surgeons jobs is to try emove them all or as many as he can find. I know my surgeon said he went to the one right at the top (its got a name not sure what now) and he managed to remove it - some are bigger than others and it might well be that some are left behind. Do you know how many you had removed and how many were affected? Also its not just the nodes that carry the cancer cells it can also move around in your blood stream and I think this is called vascular invasion (I had it). The chemo is supposed to kill the cells that may be in the blood and the radiotheropy is supposed to kill anything left behind either in the breast or armpit. Unfortunately they cannot guarentee anything and that is the biggest fear. Like you I went through all the treatment, WLE, MX, full clearence, chemo and rads and I live with the fear everyday that it might spread/return as cancer is so unpredictable. I hope you get a full treatment plan asap. take care xxxx
Hi Jo
While you are waiting for other forum members to respond to your post I thought I would just mention that you could also talk this over with our Helpline staff. They can offer information and support. The number is 0808 800 6000. They are open from 9-5 on weekdays and 10-2 on Saturdays. Calls are free and confidential.
Very best wishes
Janet
BCC Moderator
Hi Millykins
I’m also very sorry to hear of your diagnosis and like others live in fear of it.
I had a lumpectomy and full axillary node clearance initially. There’s a bit of a discrepancy in terms of number of nodes I had overall between the histology report results from my consultant surgeon and the oncology report (though I’ve never bothered to question that) but initially there were 4 affected by cancer. However, after receiving the histology results I was recommended a mx. During the mx the surgeon found another lymph node, which was also affected (making 5 affected ones in total). The oncology report also said there was extra nodal extension. I also had lympho vasular invasion.
I asked the doctor who I see at my 3 monthly checkups about it. She thought the extra node was in the ‘tail’ of the breast tissue. Although I hate the mx I realise it was fortunate to have had it otherwise the node would have remained. Despite the doctor’s reassurances I still find I’m constantly worrying since I finished all of my treatment (I’m triple negative, so no backup treatment). I finished my treatment 3 months ago.
So, I guess it is easy to miss nodes but you’d think there would be some way of highlighting them all, like the sentinel node, to ensure they’ve all been removed.
I wish you the very best and hope whatever treatment you receive will help.
X
thanks for your comments - I had 22 removed & 3 affected so not a high percentage & as I say I am not looking for blame just to find out if this is normal or not & why there are no checks done if sme can be left behind - or it may be that if only a small number are affected the ones left wouldn’t have any cells in anyway BUT if full node clearance isn’t guaranteed to mean that then we should be told or there should be a way of checking afterwards & WE as patients should be given a choice as to whether to undergo further surgery to remove anything left if we want it gone!
I too am TN so chemo is my only hope & because it didn’t stop spread then I am petrified it won’t work - I am also on Avastin a new generation anti cancer drug that locks on to the proteins & affects oxygen take up of the blood supply so really hoping the combination does have some effect. I will have to wait til another scan in 3 months to see if it is working. Not an easy time but i am trying to stay positive - just feeling down tonight as the chemo brings on my cough really badly and stops me sleeping so I am rather grumpy tonight. XXXXX