Just wanted to know lovely ladies that those of you who had an axial clearance, how many of your lymph nodes tested positive for cancer? I had 15 out of 20 removed and they all tested positive, so when I have radiotherapy next month, I will be having the lymph nodes at the base of the neck blasted too. I’m curious, because my oncologist kept going on about me being in a high risk group to have recurring cancer, since my lymph nodes all tested positive (seriously, she kept mentioning this). I’ve just walked my way through my two ops and chemotherapy, blissfully unaware of the danger I’m in, but now my oncologist has made me face it!
Hi TUL24 - I am going to try to tag @Jaybro as I have seen other posts of hers on this exact question. I hope she can help reassure you, her posts are very positive. Honestly though, some oncologists and doctors do need to learn how to explain things to patients better. Another option might be to speak to the nurses on here for more advice.
My very best wishes to you as you go forward with radiotherapy. Evie xx
Hi TUL24
Jaybro reporting as requested 
When you read blogs like Liz O’Riordan’s (breast cancer surgeon with breast cancer) it’s a real eye opener. Not just the way she had to learn to be a bc patient but how it changed her outlook completely: she’d felt real compassion for her patients but it was only her own experience going through the cancer factory (my word) that she realised just how delicate a touch it requires and how short of the mark specialists can fall.
I’m guessing Evie mentioned me because I can outdo you in the ‘lymph node stakes’ at 19/21 infected. No one made much of this once they’d been removed. Maybe because I was a bit of a zombie during that time of chemo? I marvel that you ‘walked’ through it all - I had to be dragged. My CT scan showed no signs of spread though there were enlarged nodes in my central chest (never mentioned again - my adjuvant oncology nurse said to forget about them so I did) and my MRI was clear. All good news. Thank god for lymph nodes doing their job.
Then I made a huge mistake and broke the cardinal rule of DO NOT GOOGLE. Having completed my treatments, I felt ready to ask the questions I couldn’t ask before. I asked my bc nurse about my diagnosis and she brought it up on the screen and went through what it all meant. That night, lying in my usual anastrozole-induced state of alertness at 2am, I thought about one thing I’d seen that Belinda hadn’t explained - my NPI score - so I googled it and ended in a bad state. Prognosis ‘poor’. Not really what one wants to know, having gone through a hellish time with chemo (radiotherapy was a doddle). I contacted Belinda and she replied with an amazing email that really put things into context. Statistics and percentages are nonsense to everyone except the specialists, who have to use them to calculate the best treatments and outcomes for each of us. My NPI score was the surgeon’s guide to the oncologists about what was required next. Each treatment, radiotherapy particularly, improves on that score so it becomes irrelevant (the reason she hadn’t mentioned it).
So I’m guessing your oncologist is stuck with the statistics. And she’s right. You are ‘high risk’. However, a little empathy would probably make her reframe what she is saying. Let’s say you have a 75% chance of survival in the first 5 years, like me. That sounds terrifying - we want out 100% back. We focus on the negative - it’s going to come back. But in fact, statistically, for every 4 women like us, ONE will get a recurrence. That means THREE of us will not. Belinda’s theory was that we can spend all our time worrying that we may be that one person and live in a fearful world - and then live as long as we would without cancer. So why waste time worrying over something we can’t control? We could reframe our thinking to ‘it may come back but the odds are good in our favour’. Not as high as we’d like but it’s not something we can change. Be one of the three. She suggested focusing on the ‘it won’t recur’ or ‘it might recur’ rather than ‘OMG it’s going to recur’. She said I might jump about a bit from one camp to another but, she ended, “just enjoy camping.” So that’s where I am, camping. I don’t think about recurrence, though I do get occasional surges of adrenaline when I read a post from someone it’s happening to. I don’t ignore them. I recognise that’s my fear and I let it go. Belinda has convinced me that, if it happens, it happens, but the greater chance is that it won’t.
I hope I’ve explained it well enough. It’s the basis of my own blog. You may be someone who needs answers to all her questions. If that’s the case, it may help you keep a clear perspective. ‘High risk’ isn’t a guarantee that the cancer will return; it’s just more likely than for someone who perhaps had a lumpectomy and then hormone therapy, like my mum. (And she had a second, unrelated bc 20 years later! And she lived to 89).
If you want to read my blog, just PM me and I’ll give you the link. Liz O’R’s can be found via Google. Meantime, maybe think of your oncologist as a scientist who hasn’t quite grasped patient-skills as well as she ought. And talk to your bc nurse too. Good luck with the radiotherapy. I had the neck nodes zapped too - the worst I got was a dry throat. All the best,
Jan x
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Hello TUL24 & Jaybro
May I just add my twopennyworth on the whole sticky question of lymph nodes, statistics, averages…
I had a full axillary clearance following a mastectomy after the one sentinel node removed proved unexpectedly positive; the ultrasound had suggested otherwise. When I received my results from this second surgery, I was aghast to learn that only a further five lymph nodes had been removed. I knew that the average number of axillary nodes is between 20 - 40, so I immediately jumped to the conclusion that a large number of lymph nodes, all positive of course (!!), had been inadvertently left behind. The surgeon assured me that he had competently performed a full clearance. He went on to say that the fewest number of nodes he had removed in such a procedure was three. The greatest number he had removed was sixty. All women involved were ‘average.’ Normal even. Perhaps some of us possess few lymph node clusters the size of plump grapes? Perhaps some of us have many clusters of little seeds? Should 10/30 positive nodes alarm us more than 2/6? I now choose to use this little story in my favour and have decided to take all statistics with a substantial pinch of salt. The extra seasoning can make them far more palatable.
Pat x
Hi ladies
This is one of the most positive threads I have read on this forum. @TUL24 hope you have gained something from the replies. And I would endorse the view that the senior medics are generally not the most empathetic in the way they speak to us - they really don’t always get that what is everyday to them is terrifying to us!! But I really do admire your attitude in getting through everything up to now. Don’t let the oncologist’s words knock that attitude.
Thank you @Jaybro and @Justplainpat for your down to earth and pragmatic outlook as always. And Belinda sounds like the nurse that we all want and need Our situation is what it is but focusing on the negatives won’t do anyone of us any favours at all.
Just great to read such positive and common sense attitudes from all of you in one post.
Thank you for the reassurance ladies. I knew I could rely on you. I did tell myself my oncologist was spouting the same thing she tells everyone. As it is, I’m expecting radiotherapy to be easier than chemo, which tbh, saw me in hospital a few times. I’m looking forward to getting my all clear at the beginning of next year and I’m looking forward to going back to work. I’ve already decided we shall have a summer of fun, when my family and I do lots of fun things together, because I’m confident this coronavirus business will be sorted. Life is for living
Xxx
I had a full clearance 14 lymph nodes taken out of which 5 where positive, due to have chemo therapy and then radiotherapy followed by anti-hormone treatment. Its all so scary.
Hi Jan
I really hope you don’t mind me emailing you? I’ve just seen your posts re lymph nodes and for the first time ever gave me a little comfort with my situation. I am constantly looking for positive vibes. I have a full node clearance and 23/26 lymph nodes were cancerous. My oncologist has said I am high risk and doesn’t give me anything back or a glimmer of hope I could be ok. Didn’t even want to give me statistics! Feel he’s given me a death sentence. Took 3 months from removal of tumour and node clearance in June to start chemo. How are you doing now? Again sorry to contact you just so distraught about the whole thing x
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