I’ve just been copied in on a letter from oncologist to GP, stating I had apical nodal involvement. I think these nodes are just below the collarbone, from what I can find…
It’s just sent me reeling agian, don’t know what to think. Is this stage 4, like supraclavical?
Am I now dying of breastcancer? Officially, I mean.
Does anyone know?
I’ve just answered my own question (rather google did) that I’m stage 3C.
Hi jane
try not to panic about stages- lots of ladies survive many years at stage 4. I was told that superclav node involvement is stage 4 as they are inoperable but I have read on here about ladies having nodes removed from by collarbone. My skin mets diagnosis made me stage 4 anyway as the skin, muscle + soft tissue on my mx side was affected by the recurrence + this us stage 4 apparently. I didn’t want to know but my onc mentioned it.
Try not to worry fingers crossed tge rads does the trick for you.
Tina xx
Thanks Tina, it helps to know others are out there surviving this shit. I just read survival rates for stage 3C are 35% which is a figure that makes me light-headed with panic but I know in reality it doesn’t mean much to an individual.
I had soft tissue involvement too, nothing in skin yet.
I just needed to come here as OH is out and I’m home alone with a small baby and a frightening letter feeling pretty helpless!
Hi Jane
Sorry this has thrown you into panic mode. I think those nodes are what used to be called level three nodes.
Level 1 being where the sentinel nodes are, then level two are deeper, then three is the deepest, but the are not subclavicular. I def think you should arrange an app with your onc to talk through this as you were not aware and they might be able to explain much more to you.
Hope your oh comes home soon, it is not good being on your own with stress like this. Or you could phone the helpline.
Take care
Debx
Hi Jane,
can you call someone in to be with you and your babies until hubby comes home, you could call in then.
Dont panic over statistics! Dont know if you have seen this as to the explanation of node levels. “The axillary nodes, which lie below the axillary vein, can be divided into three groups in relation to the pectoralis minor muscle: level I nodes lie lateral to the muscle; level II (Central) nodes lie behind the muscle; and level III (apical) nodes lie between the muscle’s medial border, the first rib, and the axillary vein. There are on average 20 nodes in the axilla, with about 13 nodes at level I, five at level II, and two at level III. The drainage from level I nodes passes into the central nodes and on into the apical nodes.”
Take Care. Tina x
Hi Jane
As Deb has suggested, you could phone the helpline and talk things through with one of the team, it may help. The number is 0808 800 6000 and the lines are open until 5pm.
Take care
Lucy
Hi jane, big hugs to you, get your self some support pronto, too hard to deal with a letter like that alone and unprrpared. Going to find snd batter your oncogist for treating you so thoughtlessly.
Vickie
xxxc
I with Vickie! How thoughtless of your onc.
Im so sorry to read this Jane. I do hope you get a proper explaination soon.
Wish I knew what to say to make you feel better, but sending you love, power and hugs.
Stay strong lovely Jane.
xxxxxxxx
Hi Jane!
Sarah here. I think your med. people should have been way more sensitive - it is cruel to just send a letter like that to someone without any proper warning. I’m sorry you are panicking and I totally understand. I’m not sure if you know my history, but I was dx’d a year ago this week with something very similar - it has never actually been clearly explained to me where my lymph node mets were, but I didn’t feel them in the armpit or above the collar bone, so I guess they were non-palpable and behind it and also way into the considerable flesh of my armpit. I think that made them definitely inoperable as onc. talked about arteries in the way, not getting clear margins and losing the use of my right(bad) arm if they attempted an op. So, as you prob. know I had chemo. and rads, which have showed 2 clear scans since. So…what I’m trying to say is that I do NOT feel I am officially dying of cancer! Some may say I’m in Cloud Cuckoo Land - but it’s a place I feel comfortable in at the moment! I too have read the stats (though I thought with aggressive rads treatment they were around 50% survival at 5 years) - but I try not to think of them too much as I will actually go insane!
Please try and feel that the rads will blast it to smithereens! Have you started them yet? Feeling for you and your family. Pm me if you have any other Qs.
Love, Sarahxx
Thanks all for your comments.
Midge and Tina, thanks for the explanation of levels of nodes. I didn’t know this so feel a bit better knowing they’re still axillary nodes.
Sarah, I’m really glad to know that at the moment all is well for you after your diagnosis. Long may that continue! I didn’t realise there were so many possibilities of levels. I think that they’ve taken out one affected node but suspect more…
gotta go feed a hungry two year old before the cat eats her supper!!