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Any docs out there - lymph node set up question!

18 REPLIES 18
JaneRA
Member

Re: Any docs out there - lymph node set up question!

Even when you have had axilla clerance some nodes still remain. I had 'clearance' with 23/25 nodes cnacerous but now have cancerous nodes in my axilla, neck, chest wall, loads of them doing nasty cancerous things like destroying my vocal chords. A little known piece of information I have learned at my cost.

Mine took 2 and a haf years to reappear and they have got steadily worse over the last 18 months (with chemotherapy of various kinds.)

Be vigilant...sudden onset of lympheodema may mean cancerous nodes in neck or chest wall blocking lymph.

Jane

teacup
Member

Re: Any docs out there - lymph node set up question!

I had 20/23 nodes with spread. I also had the apical nodes involved which I think is a poor prognostic factor.

HannahTate
Member

Re: Any docs out there - lymph node set up question!

Hi everyone
Reading this thread has raised questions in my mind again about my path report after my mastectomy. I had 11 or 13 lymph nodes removed not quite sure of total but only one was infected. It said it was metastases and not micro- metastases and there was a suggestion that it was 2.5 cm in size. The thing that worried me was that they also mentioned peri-nodal soft tissue infiltration and this suggests to me that the horrible thing was trying to get out! Having chemo now, but it does make you worry whether the cancer has got elsewhere in the blood stream waiting to raise its ugly head at some later date!
Any insights or someone with medical knowledge to help us out there?

Hannah

lyndu
Member

Re: Any docs out there - lymph node set up question!

When I had my first tumour back in 1991, it was practically on my midline, only just into the right breast. I had a lumpectomy and the usual underarm node dissection, but I also had the inframammary nodes sampled.
I only found that out because it hurt like anything when I laughed, and the surgeon said "That would be from the rib spreader, it takes some time to settle down". I was a bit gobsmacked, and I haven't ever heard of anyone else since that's had that procedure.
When I had a second primary last year, I told the surgeon going through my notes I'd had this. He seemed a bit sceptical, and checked, and he then said I'd had a remarkably thorough surgeon.
Which he was - I used to challenge other bc patients to spot my underarm scar, and most couldn't, he hid it beautifully. Wish my mastectomy scar was going to be as tidy.

Lyn

alise
Member

Re: Any docs out there - lymph node set up question!

Hi All

My tumour was near centre of my chest but my onc said that if under arm nodes are clear then ones in the middle of chest usually are as well especially if margins are clear. He said its about its ability to travel and if its not gone to main ones under arm it is unlikely to have gone to others,

ALise x

ForumMember
Member

Re: Any docs out there - lymph node set up question!

I have recently finished chemotherapy (4xFEC 2xHerceptin/Docetaxel) and am scheduled for surgery in November. My tunour has shrunk from 7.5cm to 1.5cm so I am now facing a lumpectomy instead of a mastectomy. However, I am having a 'full clearance' of lymph nodes both under my arm and from my collarbone which, apparently, they access from the same incision and can remove them from behind the breastbone (?). I was quite surprised by this information as no-one had told me anything about the lymph nodes in my collar bone, only the removal from under the arm. I have no idea how many are affected but they are adamant that everything needs to be removed. I am now concerned about the probability of developing lymphodema but when I mentioned this to a breast care nurse, she rather clumsily suggested that it was better to have lymphodema than be dead ...... nice one! I still feel that it may not be necessary to have them all removed as I understand this to be a rather old-fashioned approach. Anyone else had this experience?

Pheebster
Member

Re: Any docs out there - lymph node set up question!

I think you will find there are 3 sites for l.nodes. armpit, outer breast and collarbone.

Molennium
Member

Re: Any docs out there - lymph node set up question!

There are lymph nodes in the middle of the chest but they are inaccessible I believe as they are below the ribs so they don't operate on them as to do so would involve cutting through bone - at least that's my understanding. I had some lymph nodes in other parts of my breast too, as they found one right by the tumour when they took that out.

different women have different numbers of them and the arrangements are slightly different but the ones in the armpit are at different levels and normally cancer cells go to the bottom ones first before moving upwards, although as someone here says rarely it skips a level.

Mole

oscar1
Member

Re: Any docs out there - lymph node set up question!

Hi Blondebird,

I asked for a total axillary clearance because I didn't want the chance of any lymph nodes that might be affected remaining. As it turned out, all the nodes removed were completely clear, but I am still happy with my decision - I just didn't want anything left, as in my mind I hoped it might mean less chance of a recurrence.

Your Onc is right there might be some lymph nodes remaining that are affected, but hopefully radiotherapy treatment will zap those. If you feel unhappy in any way, please speak to your Onc again - whilst under the care of your Onc, this is your chance to find out/make sure that you are receiving the best treatment available to stop the little blighter coming back. Best wishes, Jacqui xx

BlondeBird
Member

Re: Any docs out there - lymph node set up question!

Hi
i am new to the forum so forgive me for adding my comments. Today i saw the oncologist and despite reading lots of info on this site and other websites something new was said to me reference lymph nodes.
My tumour was in my left breast very close to the middle of my chest; he told me that although my left armpit lymph nodes were clear (four taken after SNB) that we also have lymph nodes in the middle of our chests and there was no guarantee that the cancer has not spread there but that it would be too small to see if it had. Does this sound familiar to anyone as i am far from experienced ???
Thanks xx

sukes
Member

Re: Any docs out there - lymph node set up question!

Hi Ostrich,

Let me tell u about me. I had 5 out of 9 nodes involved and was under the understanding it was a ladder effect. I then asked the onc which ones were exactly involved and she told me 2 at the bottom, 2 at the top and 1 in the middle. i always wonder about nodes but hey they are out and chemo should hopefully moped any stray cells up.

Sukes

Lily200
Member

Re: Any docs out there - lymph node set up question!

Hi,
sparkler - sending cyber hugs and I hope you are wrong and look back on that thought as a dear old lady. Until then go for it
Lily x

ostrich
Member

Re: Any docs out there - lymph node set up question!

Thanks for all your comments ladies,

I am more than happy to go with the flow and not think what ifs and am happy with my treatment plan. Am feeling the best I have physically and emotionally since the op and not that worried about the future. Its only sometimes when someone else raises a question I think, hmm... and then something that was floating around in the dark recesses of my mind pops up and I seek an answer or someone else's thoughts on it.

I know the chemo is designed to zap anything else and the tamoxifen as a prevention and my prognosis is good so I am getting on with living and happy in myself. I can't change how I got here or do anymore re the future so cie la vie.

xxx

ForumMember
Member

Re: Any docs out there - lymph node set up question!

Hi Ostrich

Thought I had better tell you my story. When I had my mast - they did partial node removal - they got 9 out - all clear. That ws in Dec last year. I had chemo prior to that. In aug this year, if found a swelling under my arm at the same side, turns out I had cancer in 2 lymph nodes and ended up having a full node clearance. They dont like doing full clearance where I am because of the risk of lymphodema. I was told I was very rare, because as your onc said, the normal course of spread would be to the nodes closest to the tumour, but in 1% of cases - the cancer 'skips' passed these nodes and goes to nodes further away. They actually do call it a skip lesion. My original tumour was unresponsive to the chemo I got too. Since I have been on here I have never heard of anyone else having this. So altho what your onc says is not untrue, there is the odd unusual case.

But, as the others have said, there are no guarantees in this game, with or without nodes involvement. I am just living my life for the now and trying not to worry too much for the future. To be honest with you, deep down, prob since soon after dx, I have a deep seated feeling that I will be one of those people who is not going to do well long term out of this - but maybe and hopefully I am wrong. But I sure am not going to let anything stop me doing what I want to do now.

All the very best to you
S
xxxxx

ForumMember
Member

Re: Any docs out there - lymph node set up question!

Hi Ostrich

You may find our publication 'Treating breast cancer' useful to read, pages 17 and 18 contain some information about lymph node surgery, you can read it via the following link:

http://www.breastcancercare.org.uk/docs/bcc08_treating_final2_0.pdf

Please also call our helpline team or contact our 'Ask the Nurse' service where our specialist breast care nurses can offer you further information, the number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2. The ATN service can be accessed via the home page.

Best wishes
Lucy

Lily200
Member

Re: Any docs out there - lymph node set up question!

Hi,
i was concerned about this too as I was originally told I would have 4 nodes out. Much much later they dropped into the conversation that theyonly had one, the sentinal node. They had expected it to be positive but it wasn't. When I said why only one, she said ' they take a lump of tissue and it depends how many the lab technician finds or looks for, to how many we get, he probably only found one.' I was not impressed with this casual approach but my sentinel node had been tracked so they knew it was the one coming from the tumour first and it was radioactive, so crackling and dyed bright blue so hard to miss. I was told they are in a ladder system, so don't check right up to the top. Tumours can grow their own blood vessels, which is called vascular invasion or they might say 'you have bloods' . If they get their new blood vessels to reach other ones then cells can travel around. As I understand it, the chemo is to zap all of these possibilities. Not sure you ever get any guarantees in this. My book says people with negative and positive nodes can both sometimes have spread elsewhere or not. There is no hard fast rule, it is just the probablility of having little Cs is higher with more nodes, as you would expect and then you get chemo to track and zap them.
Not sure if I helped, best to check with an expert
Lily x

ostrich
Member

Re: Any docs out there - lymph node set up question!

No I don't have vascular invasion, according to my path report, x

msmolly
Member

Re: Any docs out there - lymph node set up question!

Do you have vascular invasion? It is possible to have metastatic spread (via blood stream) without any lymph node involvement whatsoever.
Scarey but true I am afraid.

ostrich
Member

Any docs out there - lymph node set up question!

Hi

Was just wondering if someone could confirm what my Onc told me (not that I don't trust him) as I have been unable to answer it myself from google.

Do the lymph nodes in your armpit have a hierarchical order? ie if they take say 9 (as they did in my case) and find micro mets in 1 does that mean that the other 10 or 20 won't be affected and the cancer hasn't gone any further?

My Onc said that the lymph nodes are on a ladder type system and as the bottom rungs so to speak had been taken out and only 1 affected the higher up ones would be fine. Is that true?

If its true, does that mean that the chances of the cancer having got out of my lymph nodes and around my body or into my blood stream are very small?

I can't work it out from the places I have looked and from what I can work out about the lymphatic system any one of the lymph nodes could have exchanged fluid with the blood stream let alone with other lymph nodes.

Any advice/help/simple idiots guide to the lymphatic system would be appreciated.

xx