Lymph nodes positive :(

Hi everyone

I’m looking for some info on lymph node involvement beyond the general stuff about SNB! My diagnosis is changing everytime I see someone so I am trying to get ahead of the game so whatever comes next I am prepared for (that’s how I deal). At first it was thought I had a 13mm tumour with -ve LN. Extra tests and I now have 40mm tumour +ve LN and hormone +ve - don’t know yet re HER2. Have chosen neoadjuvant chemo over immediate MX as told no difference between the two and at least this way WLI poss meaning reduced recovery time if no MX required. I know the nodes are seperate and there is some thickening in the wall but they are not sticking together so just wondered if anyone had any ideas as to likelihood of mets?

Any info would be greatfully received. Thx

Fi xx

Hi

I so know the feeling of every time you get info it is bad. My snb was positive 1 out 3. I am not sure if by thickened walls you mean capsular invasion. I had that with the lymph node that was positive. IT mean that the cancer was trying to get out of the node into the soft tissue, but ad not yet. The main impact of that, other than knowing it was an active b*gger, was that even after a full clearance I needed rads to the axilla, to kill of stray cells. Although I had a reasonable amount of cancer in that one node, the rest were clear, so I like to try and think that it was a tough little node and was stopping the cancer getting any further, but that is just my way of trying to stay positive.

The other benefit of Chemo first is you will know ifit is actually working. Your tumour will shrink, so you can have some confidence about it working in the rest of your body. I don’t know about the chances of mets. Have your team suggested scans.? Mine only did them if you had multiple nodes, si I didn’t qualify. I would have liked them though.

Take care, you are a tough place right now.

Hug

Debx

Fionhun,

The docs are still playing ‘hunt the primary’ with me but they think they’ve found lots of very tiny ones but that’ll be confirmed with (yet another) core biopsy next week.

My first sign was lumpiness in my axilla which, when biopsied, was a mass of malignant nodes. The biggest was 30x14mm. These were described to me as ‘metastatic’ which panicked me - I thought I was literally dying at first; it made me think that I had secondary mets all over, but it just meant that the original tumours (still unconfirmed what they are) had spread to the nodes. I’ve had a CT scan and they couldn’t see anything else anywhere else in my body - they checked the colon especially, as I have Crohn’s disease.

So if you hear the node malignancies described as ‘metastatic’, I’m saying, don’t panic, if all they can find is in the nodes.

Good luck; it’s not an easy situation to be in.

Edit: I’m on neoadjuvant chemo, too, it was the only option with no primary to operate on!

Im the same as Ninja but curently in remission.

Hi everyone. Thanks for the replies I really appreciate it! I just can’t wait to get going on some action even if it is chemo. God this disease is a pain in the preverbial. Good luck to us all and here’s to being cancer free at some point :slight_smile:

Fi xx

There are others who are having neoajuvant chemo before a mastectomy and node clearance so you’re not alone, and it’s not uncommon. The person I’m thinking of is currently of holiday with her family before her op, otherwise I’m sure she’d be on here posting herself.

I’m afraid no-one can tell you about the likelihood of mets, as everyone’s different. There are people who have just a couple of nodes involved and have mets, others with most of their nodes involved and nothing else discovered, and people in between the two extremes, so I’m afraid you’re going to have to wait until you get the results of your scans and listen to what your specialists have said re likelihood. Though they’re not well-known for letting us know what they’re thinking before they get any evidence.

Best of luck, and I really understand your approach and wanting to know everything. I suggest you take great care if you’re googling, as there is a lot of nonsense out there, with sites that are single-issue, or trying to sell you something, or written by people who haven’t got a clue what they’re talking about, no evidence to back up their claims, or if they do it’s really out-of-date data they’re working with, etc etc.

So take care, and use as your primary sources of information the reputable sites such as this one (Publications section is good), Macmillan, Cancer Research, that kind of site.

Best of luck, and use the forums as much as you need to, for support, questions answered, sharing your fears when you don’t want to worry your friends and family, and even for a bit of light-hearted (but often rather black) humour.

Hi Fi,

CM’s right - the number of nodes you have that are involved isn’t really a clear indication of whether you have mets or not.

I’m sure you’ll have scans at some point (I had a bone scan and CT scan) to check for mets and we all hope they’ll be clear.

I had a 28 mm lump removed, ER+ HER- and 6 out of 12 nodes affected (that was a full clearance - I only had 12), one of which measured 30mm. My onc keeps saying it’s 7 out of 12 but I’ve got a copy of my path report and I think she just added them up wrongly early on and made a note of the wrong number!

My scans were clear. I had my op first, followed by chemo and I start rads this Wednesday, but it’s also very common to have the chemo first, followed by the op.

At the moment you’re still waiting for full results - once you’ve had your scans you’ll know the full story. Until then I’m afraid you’re in a horrible place, but we’ve all been there so please do keep posting and chatting to us all and let us know how you get on.

Jane xxx