I know how you feel, my initial scan hadn’t showed any suggestion of lymph node involvement either.
I stayed in overnight because of another health condition, but was fine and out the next day with a drain which I had in for around 5 days. There was a bit of initial discomfort (not bad enough to call it pain) which paracetamol sorted out.
I felt over the actual operation after around 3 weeks, but did have quite a hard lumpy patch under the operation area, this is gradually softening but is quite a slow improvement. It doesn’t really bother me, and I have a full range of arm movement (the exercises are essential).
thanks @Bookie good too hear. I am assuming they will do full clearance I just don't know, sometimes the communication is not great and I can go weeks without hearing anything. How did you feel after the op? Was it just day case and did you have a drain bag?
That's reassuring to hear, I just wasn't expecting it as node biopsy was clear. How did you feel after op?
I do feel for you it is stressful until you get results. I had one positive node not found until sentinel node biopsy. However I then had full node clearance of 30 nodes but none of these were positive.
I am happy to share my experience if you have any other questions.
I had 2/4 positive from my first surgery, so then had the full axillary clearance.
They found a further 10, all of which were negative, fingers crossed for you as well.
I'm picking up on this thread as I've got to go for auxiliary node surgery as 1 out of the 3 removed was positive so now I'm panicking what they'll find after this surgery. Could you please send blog as you are an amazing source of knowledge and practical sound advise
Thank you xx
Oh! Now I understand. I hate that breast cancer is so weird. But it sounds like they are taking all due precautions and as much as you hate chemo it'll only be temporary. Wishing you much luck!!
thanks for your message I’m so pleased to hear you are doing well x
So I was told it’s rare (1-3%) to find invasive cancer in lymph nodes when I have DCIS hence why I was so shocked.
I will meet with breast surgeon today and get dates for lymph node removal and take it from there. So daunting.
so good to hear how advanced medicine is, thanks for info.
take care x
Thanks for that great information and indicators. You are right it’s a hellish time but it’s a good support speaking with you all.
hopefully the radiologist is much more on it and looking in the right area!!!!
all the very best you are so inspiring x
Yes, you are right. Thank you! I need to calm down. I was so nervous while waiting for additional testing. I had one really awful week. But last week was very good. I do not google anymore. 🙂
I got my CT scan results and they are okay. They tested tumor in the lymph node and its biology is similar to the one in the breast but Her2 was 2+ so additional testing was required (=more waiting for me😅). The final test was negative.
My doctor suggested chemo because I am young and lymph nodes were positive.
I am writing this from the hospital. I am waiting my first AC.
I am cool and surprisingly calm, wearing pink dress 😉 sending hugs
1 lymph node is certainly not uncommon and they tend to grow “up the chains” as my oncologist said so many don’t even remove all nodes when only 1 or 2 are effected. You may well find you have only 1/20 or even 30 nodes effected.
kf you have a look on nhs predict breast and put your cancer details in, you’ll see that a node or two doesn’t actually make that much difference to your prognosis.
good luck with the surgery. I had it in Feb last year and had four nodes effected. It was a shock at the time but a new treatment (abemaciclib) was approved for early bc whilst I was having chemo and I already feel better about my prognosis. Things are improving all the time, many vaccines are in phase 1 trials right now.
I know it’s a late contribution but I just wanted to clarify the CA15-3 and CEA markers. The numbers themselves are irrelevant. What is relevant is what happens to those numbers. You want them to drop and stay stable. What you don’t want to see is a CONTINUED upward trend over several readings. Incidentally, not all oncologists or hospitals use these markers as they aren’t considered that reliable, just a rough indication. In my position, it’s all there is to go by as nothing shows up on CT scans (except the time a radiologist ‘lost’ my left kidney. He meant my breast!!!)
My CA15-3 at diagnosis was 128. It dropped to 47, then 18 (my bc responded very quickly to chemo). Things are a bit uncertain recently as they rose to 48 but they’ve stayed stable there for several treatment cycles - so no continued upward trend so none of us is unduly worried. I know of one women whose initial CA15-3 reading was almost 3000. The numbers don’t matter. 3000 is no worse than 128 which is no worse than your reading. It’s what your own future readings over a period of time do.
Everyone has CA15-3 markers because it’s not just cancer that activates them. All sorts of infections and conditions can. A healthy person is considered to have a reading under 35. So a reading of 26 is within the ‘healthy’ range in theory. What’s going to matter in your case is whether it now stays around 26 or, we hope, doesn’t increase.
A CT scan is routine at some stage in the treatment. Some hospitals do them early, some at the end of chemo, some at the end of all treatment. I actually had mine a few weeks after my surgery, presumably because of the lymph node involvement. And with 19/21 lymph nodes infected, they found nothing and they have continued to find nothing. They know what to expect from experience but they need evidence as actual proof that your body is clear. Please don’t think they are expecting to find tumours (your markers would be sky high), they are expecting to find nothing. One thing to note is that you don’t get the results for a while. 2 weeks is very good, 4 weeks is about acceptable but the backlog in radiology is so bad that some patients are waiting 6-8 weeks. It’s not healthy to maintain a high level of anxiety of what the report might say (but probably won’t) so please try hard to work on those resilience skills. It really will help if you can breathe properly to keep yourself calm for much of the time. I really hope something here helps clarify things a bit because this uncertain time is hellish.
Take good care of yourself. Xx
Thank you… I was shocked when told by surgeon it’s a highly unlikely occurrence for sentinel lymph nodes to be cancerous hence and to be told I now need them all removed.
Mentally draining and scary but reading all the comments on here really does help put things into perspective. Hopefully I have a treatment plan soon and I can focus on getting there.
I'm so sorry you find yourself here, Pinkrose, but that's not rare at all. Lymph node involvement is very common. It may mean a different treatment regime but don't let it concern you unduly. Breast cancer treatment is a great equalizer.
I’m reading all your messages and I don’t feel so alone anymore. I had a mastectomy on right breast and 1 out of the 3 sentinel Lymph Nodes removes showed cancer (exact grades etc I don’t know yet). Apparently this is rare but I don’t think it is…
I’m so scared now as I don’t know how many more are lurking around and if it’s spread. I’m going in for an op next week to remove all nodes under right arm and more anxiety for getting results… I’m living on hope x
I know what you mean, I am still finding it all a shock. Had lymph node surgery. It's all a bit overwhelming. Thanks for posting, we are not alone. X
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.
Thank you very much!
I hope my CT results will be clear as yours were.
It is great that you can use abemaciclib. And prognosis are really great.
I hope our lymph nodes did their job and that all therapy is just in case.
I wish you all the best.
I will leave a link to a story that I found about fighting against a cancer
my nodes all looked clear at biopsy and MRI and it was then in four of them, grade 3 with LvI and extra-capsular spread. My ki67 was 18%. Just to reassure you, they then CT scanned me and that was clear. I worry about relapse much more since finding it in my nodes but abemaciclib is now also available so even for those of us with high risk disease, the four year stats on that are r86% are relapse free after four years of starting it…..which is usually about 9 months after diagnosis if chemo and radiation are used also. So at nearly five years you have a really good chance whatever your picture. There is no data for after that yet but there is so much research going on into vaccines now that I hope the landscape will be very different in a few years. X
i got few additional things to do..
they will analyse tumor in the lymph node (receptors and Ki67 will be determined). The are confused because the tumor is small with very low Ki67 but already in lymph nodes (2). Doctors expected that my lymph nodes will be clear (US, MR and clinical exam were okay).
I need to repeat blood works and tumor markers. Before operation everything was fine. Ca-15.3 was 26 (the upper limit is <31), CEA <1.7 (limit <5). CA-15.3 seems a little high to me.
And I need to do CT scan. Doctor mentioned that she do not expect to find something. But I am so scared. I do not know what to expect anymore.
Have you had any scans?
Ah right, yeah I had mitotonic rate 2, pleomorpism 3 and tubule formations 3 so Nottingham scored 8, grade 3
i had 3 X EC and 3 x docetaxal. I found EC very hard but the taxane ok. Some people are the other way around and old apparently sail through, so I hope it goes ok for you.
Good luck at your appointment and check back in ti say how you’re doing.
I’m so glad you are okay now.
The histological grade incorporates nuclear grade, mitotic count and tubule formation. Each category is 1-3 scores. Grade 1 is 3-5, grade 2: 6, 7 and grade 3: 8and9.
It describes how different cells look from normal and how fast they are dividing. This is how I understand it. You can read more on https://link.springer.com/article/10.1007/s00428-02
My biopsy results also showed nuclear grade 2 but it was revised after surgery to 3.
I have mitotic count score 1 and tubular formation score 2. So the total score is 6 - histologica grade 2.
Does your report say ‘nuclear’ or just grade? I am not sure if they can determine a histological grade on biopsy samples.
I am not in UK. I am in Croatia and health insurance does not pay for an oncotype here. I planned to pay for it in case there were no positive lymph nodes. But since they are positive, I decided to go with chemo in case my oncologist team will suggest it.
I have appointment on Thursday.
Which chemo did you get?
I wish you and all brave women here a many, many healthy years.
You are such an inspiration! And I completely agree with you. There is no benefit of worrying about things we can not change. Tears can not help me. Panic does not help me. I really hope I will be in your state of mind. I am struggling at the moment. I am still in shock how/why this happened.
I’m so glad to hear life is back to normal now but sad that your ‘normal’ incorporates a level of anxiety about the future. Really, what will be will be and you can waste so much of life worrying about what may happen that, by the time you accept it hasn’t happened, life has passed you by. Yes, recurrence is a possibility, but even if it were an 80% possibility, you might still be in the fortunate 20%. Why assume the worst for yourself and ruin everyday life when you might well be living an anxiety-free life?
You need to stay vigilant. Not obsessively so but simply not ignore any unusual symptom that lasts more than two weeks. Secondary breast cancer rarely comes back a a breast lump, although I was just advised to “keep a look out for lumps and bumps along your mastectomy scar”. No one mentioned my eyelid!! Liver, bones, lungs are probably the most common areas and they are all treatable, though the disease will never go away completely. But that is for you to be aware of, not to fear, not to be a constant source of anxiety. If it happens, then that may be the time to worry (I say ‘may be’ because, although I was a wreck during my primary treatment, I feel quite phlegmatic about my secondary diagnosis).
I find it distressing to read of women who are living in fear of recurrence. So much fear for what may never happen. If you can, talk about it, get it out in the open and hopefully find a fresh perspective that allows for the possibility but doesn’t allow it to dominate and destroy your peace of mind - peace that you have well and truly earned.
sorry to hear of your diagnoses. Can I ask what the difference between histology Al and nuclear grade is?
I was just given grade 2 at biop, which was then changed to grade 3 after surgery. My tumour was a little bigger at 18mm and my receptors were eR/pr 100%.
if you do end up having chemo then don’t panic. It’s horrible, but doable. Just one round at a time is the way to think.
are they giving you an oncotype?
im on hormone therapy and abemaciclib now- doing ok on both and life is somewhat normal again though the fear of recurrence is constant and still something im struggling to live with.
How are you? I also have positive lymph nodes (2/7). I was surprised with PHD results because my tumour was quite small (7x5 mm) and US did not show pathological nodes.
The tumor is estrogen+ (100%), progesterone? (7%), Her2 neg, histological grade 2 and nuclear grade 3 with low Ki-67 8%.
I gone through double mastectomy with reconstruction and SNL removal. Now I am waiting to hear the treatment plan. I assume I will need radiotherapy and anti-hormonal therapy. And not sure about chemo. I am scared and in panic. Crying a lot. I am 36 and still in shock. After biopsy everyone was optimistic and mentioned that the cancer biology is good. But now I not sure what to expect.
thank you for the reply and I am so sorry to hear you are stage 4, but glad treatment is keeping things at bay.
so, was it the trip beg that spread and the other that didn’t? Was the other tumour ER positive?
I had full clearance and 4/13 nodes positive. My tumour was under 2cm so they were surprised at number of nodes- I worry this means it is very aggressive (grade 3).
I have put details into nhs predict and I know I have a 1 in 3 chance of not being here within 10 years. It’s scary to know but I’d rather be realistic so I can get on and do things I want as I’m only 39 so thought I’d have more time. I just can’t get away from the scared and sad feelings.
It IS pretty scary if you think of it in scary terms. You don’t say how many nodes were tested or if you had a full axillary clearance. The sums then do make a difference. If it’s 3 out of, say 21 (each lymph node cluster varies in number), then you can still feel pretty confident that your infected nodes have successfully played the gatekeeper and, with further treatment, you won’t develop metastatic cancer. You could ask your oncologist but remember, once heard, it can’t be forgotten. Also remember statistics are just predictive models. We aren’t statistics - we are people.
To answer your question honestly, my optimistic outlook was misplaced - but I did have peace of mind for a year or so. Plus lockdown got in the way. What I hadn’t realised was that one of my two primary tumours was triple negative. That’s the nasty, aggressive version, hard to track, hard to destroy. So in Spring 2021 I was diagnosed with Stage 4 or metastatic triple negative breast cancer. Even my oncologist was shocked but 18 months of treatment and I’m still here, defying the odds, and I still wouldn’t change my thinking - most people with node involvement do NOT go on to Stage 4 and do NOT get a recurrence of breast cancer. I’m just an unlucky one.
So my advice is for you to decide how much information you really want and can deal with. Then ask the experts about your particular case because each diagnosis is unique. Wishing you all the best and, most important, peace of mind (and I really hope others reply - one negative example is not what you need).
Do you mind me asking if you’re still NED? I have grade 3 in four nodes…pretty scared x
Hi Steval, good to hear from you. Im fine thank you, finally got my act together!! You are near the end of the waiting and testing and scanning and blood tests and more waiting and then probably a bit more just for the fun of it!! Keep going hen, it feels very lonely and very scary but you do get acclimatised to it and once you have a plan you will feel much better. I chose my onco surgeon whom i think im a bit in love with lol, to be my main folllow up contact purely because my onco is so non approachable. My surgeon says its part of being an onco and theyre a different breed...scientists vs hands on people persons. Makes sense i suppose!! So long as they get their science right who cares 🤪 hope your appt goes well and you get a plan so you can move forwards! Dont feel bad about feeling crap its normal its life changing and its frightening. I had a node on liver which had me in a total whirlwind of doom for 2 weeks and like you every scan/test showed another worry. Its great that they are being thorough...keep going girl x good luck, big girl pants on, lets go!!
I am having a wobbly evening and searched lymph nodes on this forum and came across your post which actually made me smile.
I was originally told that my lymph nodes were very healthy but the MRI picked up an enlarged one somewhere ....which has absolutely freaked me out. Every appointment is flagging up more and more stuff which is overwhelming me at the moment. I’ve another ultrasound on Tuesday then the onco on Wed who I hope will finally tell me what the treatment plan is (she is meant to be ultra scary so I’m taking my brother in law with me!! ).....but of course I’ve told myself there’s nothing they can do. Need to get a grip.
Thsnks for your post though, and I hope you are doing ok and remaining 110% positive.
i live this post... so calming, factual and pragmatic - thank you
please could you let me have blog details, I’m in frantic doom phase and reframing as best I can but keep getting the little negative sod on my shoulder. I find the waiting and subsequent over doom mongering terrifying. I know it is what it is and I know my frantic tears and anger is no help and will change nothing other than my own quality of life. I’m pragmatic and rational.... normally but having just had lumpectomy and being one of the luckies that gets a second surgery plus full ALND... I’m flapping like a learner duckling. I’ve got to get a grip lovely and I found your approach very comforting so if I could follow you that would be so fabulous
thank you so much for your insight xx
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
What wonderful answers. I'm four years on and doing well but was so scared at diagnosis analysing and googling everything. These replies despite being so far in now from treatment have helped me greatly. I had an aggressive grade three in two nodes but one was an Interpectoral node. At first it was all so negative until I had clear scans then my oncologist was much more positive but the fear put in me at the first appointment took a lot of getting over Thankyou for sharing the reassurance you were given and a different perspective on stats .
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.
Pat - thanks for sharing your story, I too learned something new this eve! Evie xx
Thank you Jan for coming on to help and reassure, I knew you would have some good advice. Evie xx
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.
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,
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
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!