Having been mistakenly told after initial ultrasound (26/11/15) and subsequent SLNB (nuclear tracer/day before mastectomy and blue dye/day of mastectomy 05/01/16 - 06/01/16 - no ‘blue’ side effects) that my lymph nodes were clear I was subsequently informed after pathology report that two nodes (out of two) were diseased - one node micro and the other macro.
I am now wondering why the cancer in the macro node (where there is a lot of cancer in the node and you can see or feel the cancer without a microscope) was not spotted during SLNB. Has anybody else had this happen?
I am due to have a full lymph node clearance in early Feb - I am presuming this will entail removal of nodes from levels 1, 2 and 3.
I was wondering if anybody has been through this procedure and what treatment followed your surgery?
My lymph nodes looked clear on ultrasound and surgeon told me the 2 sentinel nodes looked okay on removal but like you pathology report showed one micro and one macro. I was devastated and had further clearance but only the next tier - 5 taken which were all clear thank goodness. Surgeon said that the purpose was to see if I could avoid chemo. If any further nodes had been affected they would have advised chemo but with only 2 affected they advised having the genomic assay test (like the Oncotype test) to see what my risk of recurrence was. Fortunately it came back low so they did not recommend chemo. I know it is a blow but they can only be certain about the nodes when the pathology report is in. If you are ER positive you can ask about the Oncotype test. I freaked about when the surgeon told me the sentinel nodes were positive but it really is not the end of the world. I recovered really quickly from the second operation but I have been left with some numbness one year on under my arm. I did not have rads as I had mastectomy and I take Letrozole. All the best and I hope you get good result.
Hi Cjrd my nodes looked clear on ultrasound scan but when I had right mastectomy 9th October 15 they sampled 5 nodes 3 of them positive so done 4 of 6 FEC-T chemo to be followed by node clearance round about mid to end of April. I don’t think they know definitely whats happening with our nodes until they are manually checked that how it seems to me anyway. All the best when you have your op Cjrd I’ll look out for your posts as I’ll be having same a bit further on. Anne xx
Hi slightly different but still a serious case of missed node.
my mum was diagnosed Nov 2015 wth lymph node involvement at time of diagnosis. They decided to give her chemo to shrink tumour in breast and because it was already in nodes. We don’t know how many it was in but the large one was confirmed by biopsy and they said ‘a number of nodes’ after her MRI. Her node in axilla reduced from 2cm to 0.5cm on chemo. Her breast tumour halved. My mum then had op to remove breast tumour in June 2015. At the time they took 4 lymph nodes - a post chemo slnb - apparently a new way of doing it down to research saying ladies are over treated. She got clear margins on breast and the 4 lymph nodes were all cancer free. They were v happy - said it showed excellent response to chemo and no need for clearance or rads to axilla (she had rads to breast). After the swelling of her op subsided she felt a lump in her axilla - same place as before. She mentioned to oncologist and he felt and referred her to breast consult (July 2015). Breast consultant (who was an arrogant locum) said it was a reactive lymph node only (he only felt it) and that he wasn’t chasing lymph nodes and sent us away saying not to touch it. Not much changed until 3 months ago when it suddenly enlarged. Off we went to breast surgeon (new one - locum had left) and ultrasound was done. Cancer. CT has shown it was same node - it had never been removedthe first time! She has since had full node clearance - a further 11 nodes - and it was in 2 (matted together). Probably never gone as all the other nodes showed no evidence of ever having cancer in them (they can tell by scar tissue I believe). Now I don’t know why they said ‘a number of nodes’ on initial MRI either. Ct and bone scans have shown no spread from what they can see, which is a relief after it’s been there all this time. I asked how they could’ve taken wrong 4 nodes - no clear answer - think they are a little baffled as said its unusual what has happened but surgeon said they are close together. I wonder if it depends on them injecting the dye in the correct spot? Wondering if 1cm to left or right can send it to the wrong path of nodes?? Just my guess. It’s also shown that her anastrozole isn’t working. They are changing her to tamoxifen despite her being post menopausal.
Thank you all you have made me feel less alone today. I was also told my nodes looked clear, after WLE and removal of 3 nodes, 2 are involved (both discreet, which I think means micro) and I’m booked in on Tuesday to have rest removed. Have been told chemo is now probable. I’m ER +, HER - and have spent the last 24 hours feeling utterly alone and panicky that this is ‘it’. I’m scared to death of the next set of results now after being shocked by this. Thank you for showing me I’m not the only one feeling this way, Sarah xx
Hi Ladies, I had my post operative meeting on Friday 11th Feb. I had a Theraupitic Mammoplasty reduction style surgery. My Left breast had a 3cm and 2 Satallite legions,(the blooming thing had given birth) thankfully though in the same quadrant of the breast! The cancer type cell is IDC grade2 ER/PR Her2 negative. My random lymph node test when first detected was negative, I Thought…that’s good! But the results from the SLNB was a trace!! So my BS said they are removing them…so another operation then wait for results before final treatment plan. After reading these blogs I’m now a bit better informed… It’s such. Roller coaster ride, but trying to stay positive!
If anyone can give me any good advice, I would really appreciate it.
Denise, good luck with your next operation. I can’t offer any advice as its not something I’ve had (unless they did it when I had my mastectomy - I had 9 nodes removed at the same time) I get confused by all the different things we all have done and their medical terms!
Let us know how you get on xxx
Thanks everyone, Florida 25 March for 10 days then onto chemo. Not looking forward to that but trying to avoid worrying for tonight at least. Today is a good day ? Xx
Thanks everyone, oncology appointment is 4th March. Trying to relax til then, ready for the onslaught of chemo and the decision whether or not to cold cap xx
Hi cjrd
Thank you for asking and thinking of me! All went ok with the surgery, now at home recovering with the drip in place! Doing the exercises and nurses coming round. So…next Friday is D Day! Results and final treatment plan. Likewise, will be thinking of you this Wednesday! The journey is moving on and we are all getting there! Enjoy the remainder of the weekend. Will keep you posted with results. Thanks Denise ?
I was diagnosed with a palpable mass in left axilkary tail and palpable axillary nodes, which unfortunately were gradec3, ER PR positive, HER2 negative carcinoma with nide involvement.
After clear CT and MRI scans it was decided to have FEC-T chemo first then axillary node clearance and wide excision which I had on Thursday 27th February.
The operation went well. I have a drain in which district nurse empties daily. I have one scar on my breast which us about 3 inches, it has been glued and there is no dressing.
I have been paranoid about getting lymphoedema so doing all the suggested exercises. So far so good, not a great deal of pain and no bruising which I believe is down to taking Arnica!!
Just have to wait to see my consultant in two weeks for results. Fingers crossed. Will I guess start radiotherapy.
Plus side on the day of operation was due to hospital being full I stayed in the private section.
Hi ?
After finding a lump in my breast of 28th Dec, I was diagnosed with breast cancer on 13th January this year.
The results from the initial biopsy showed lymph node involvement but no actual breast tumour - this resulted in a full body CT & MRI with an anxious wait for results, which fortunately all came back clear.
I had my lymph node clearance on 4th Feb where they found & removed the primary tumour too! (they initially thought the primary was a swollen node).
Results, stage 1, grade 3, Her2 positive, 0/11 lymph nodes.
I have an appointment with my oncologist on 4th March to discuss chemo which I hope to start next week - although I know it is not going to be easy (I’m 39, married with a 2yr old & 9yr old) the sooner I start, sooner I finish ?
I find this forum very positive & reassuring as we all truly understand what each other is going through.
Big hugs ?
Loolyboo xxx
Thank you so much for your reply - very informative and great news that you are feeling so well 2days after your 1st chemo ? Keep it up!
I’m sat wit my hubby having a coffee in Starbucks awaiting my appointment with the oncologist - got here early as it snowed heavily in the night, did not want to miss this appt!
Hi I came home feeling very emotional like it’s all real again. I start 6 April, 3 lots EC, 3 lots docataxil or something like that, I have still not decided about cold cap. Glad you feeling ok, what’s the blood test you mention? I will make a note of it, love Sarah xx hope everyone else doing well and has a good weekend xx
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