cancer in distant lymph nodes

As well as my spine, I have mets in lymph nodes in my neck, pancreas and internal mammary nodes, and am finding it so hard to find out information about this - the only help available is for bone, lungs, liver or brain. Does anyone know of a good source of information on this area of mets?

Hi there

It is really almost impossible to find information on secondary lymph node spread. I have extensive lymph node involvement in my neck, chest wall, interanl mammary nodes and have found little infromation. In my case this kind of spread is often dismissed in leaflets as ‘only’ regional spread even though it is not curable.

Let me know if you find a good source of info.

best wishes

Jane

Hi Patricia, I am in the same boat with neck node involvement, incurable but little information about it.

Early days for the spread so far and I don’t know the full extent of mine to be honest, have yet to ask, but I know it’s not good and they can’t fix me, so I am just seeing how treatments go for now. Quite frustrated that this kind of spread is not really given any focus or clear explanation.

Good luck with your search.

Nikki

Just to add Patricia about two things which have happened to me as a result of neck lymph node involvment:

  1. The pressure from tumours damaged my left vocal chord and I completely lost my voice for 6 weeks. This has been partially resored by an operation to inject bioplastique into my vocal chord but my voice now has half or less of the strength it used to have

  2. The tumours also damaged nerves affecting my left eye and I have a droopy eye called horner’s syndrome.

I have never heard of either of these problems prior to getting them. You can find heaps of information about the effects of other kinds of secondary breast cancer spread but virtually nothing about this more unusual (though not rare) occurrence.

Oh and I also have a blood clot in my left jugular vein and my chest wall is covered in red and purple capillary marks.

Ain’t cancer great…

best wishes Patricia and Nikki…we need to write our own information booklet

Jane

Seems a bit unfair on us Jane, especially when reading these boards there seem to be quite a lot of people with lymph node involvement, yet so little information. Guess we better get writing, though I can sum it up in two words… it’s sh**!!

:slight_smile:

Nikki

Hi Jane,

I get the impression, as I travel along this rough road, that the Drs don’t realise some of us want to know what is going on in our bodies, and that we would like to be told rather than be kept in the dark.
Maybe some of it is still a mystery to them?
I’ve not seen anything mentioned in the booklets I’ve been given, about spread to other lymph nodes, and what the implications of that might be.
Sorry to hear about your blood clot. Are you having treatment to dissolve it?
Best wishes to everyone.

A. X

Hi Anna

My doctors are fine with information…my oncologist has been pretty straightforward in her information to me. What I’m so annoyed about is the lack of information from breast cancer charities…it is all so bland and general so if what is happening to you is anything other than bog standard then you simply don’t get the information. I wrote to BCC 10 months ago about the inaccuracy of their information on regional recurrences and the gaps in their secondary information. One person who I copied into my e-mail replied because I have written stuff for her in the past, but no one from the secondaries taskforce ever contacted me. Probably about time I started campaigning again.

Yes I’m on warfarin now.

Jane

Absolutely Jane - sounds like a great campaign to me. I too have lymph node involvement, and I cannot find any real info on it either. I’m not sure they know too much about it, perhaps that’s the reason. Having said that there is bound to be someone doing research on this somewhere, but god knows where

Hi celeste

I think one problem is that everything focuses on the seriousness of cancer in vital organs such as lungs and liver…and that is understnadable because it is usually spread ot these organs which is the final killer…and also most people with regional and other node involvment do also get spread to major organs. It has taken me a long time ot get my head round the fact that sometimes the spread in nodes can itself kill. My oncologist has told me that if my cancer remains growing in chest/neck area there are a number of (unpleasant) ways I can die without ever getting major organ spread…basically either the tumours crush vital organs or they ulcerate…can be dressed for ‘many months’ but then… Death by breast cancer doesn’t usually do this but it can. I do have a question mark over my lungs and this is where its anticipated my spread will be.

Sorry to be so blunt…I think the information about lymph node spread is there but just not focused on because major organ spread is the usual immediate killer.

Jane

Sorry Jane - what do you mean ‘can be dressed for many months’ - me not understanding. I sometimes become painfully aware that actually in the scheme of things the oncs generally know very little. I was told that they usually consult, or patients ask for second opinion to a Stephen Johnson at the Marsden Hospital. Maybe he knows more about this. Anyone familiar with his name

You’ve made me laugh celeste. ‘Dressed for many months’ is indeed a strange turn of phrase…just mean that weeping ulcerated cancerous tumours can have surgical dressings put on them for many months before they kill you. My problem with the lymph involvement is that treatments aren’t working…in an unusual position of having relatively little spread but virtually no treatments left…so inevitably am thinking about what happens if the tumours get worse but still don’t spread to my major organs.

I’ve seen Steve J. at Marsden…he is very good. I saw him because I wanted to check treatment options.

Jane

Thanks Jane, I had this notion of full evening dress for many months! Well Jane do tell, was he able to give you more treatment options - in what way ‘very good’ very bright, good looking, personable?

Thanks for posting that Jane, I have been wondering how this is going to kill me, and not much of what I can find explains it. I guess it’s a wait and see though isn’t it, unless of course it does head off to party on down with some major organs.

The scary thing is it seems little is working for me either, carboplatin was a wash out and now trying the Taxol / Gem, appreciate it will be another few cycles before I know if this will work but am freaked out that it wont, then I just plow through the option after option until my Onc gives me that blank ‘that’s it’ face. The really stupid thing is I feel so good right now, even on the 21 day cycles and the issues that the treatment gives me, in the scheme of it all, am really ok most of the time and crappy not so much. I know I am extremely lucky in that of course, and it will change as things progress, but right now, I dont feel like my days are as numbered as they so clearly are, it’s all so surreal.

Nikki

Hello everyone and thanks for your comments.

I saw my oncologist yesterday because of swelling and tenderness reappearing in my neck just 2 weeks after my final docetaxol. I am so frightened that the chemo which started off so dramatically shrinking my “hamster” neck has suddenly stopped being effective. He agrees it is suspicious and has arranged for me to have an ultra sound scan to try and get an idea of whats happening. Unfortunately, apparently my neck is one big lumpy mess because of damage from radiotherapy back in 2005 and it is difficult to sort out the cancerous lymph nodes from scarring from rads. I am due to have a PET scan in mid Feb which will be more informative but I am finding it hard to deal with the waiting and not knowing. I have just started Femara and one explantion could be tumour flare from the hormone treatment. Has anyone else had this?

Pat

Celeste…no full evening dress not necessary…

Pat…my chest and neck is a lumpy mess too…and as I said also have lots of red and purple capillary marks. My cancer’s triple negative so not had hormonals. I think one hard thing about this kind of spread is that the tumours feel so obvious…unlike other mets they’re not hidden invisibly away. I have CT scans every 3-4 months and the radiologist always provides precise measurements of changes in the various tumours.

Nikki: really pleased you are feelign OK on chemo. Whether its my age or the amount of chemo I’'ve had, I am finding it harder and harder to deal with the fatigue side effects. On vinorilbine I feel dreadful 6 days out of 21 and then kind of not wonderful but better the rest of the time. Also my voice seems to make me feel iller than I am…sometimes I get very upset when I can’t make myself heard against background noise.

Everything is just ‘wait and see’…with any kind of sceondary cnacer no one quite knows what process will eventually kill someone and this is not much talked about I find. I’m someone who likes to address all the possibilities before they happen and have found my hospice nurse very refreshing in talking about this.

Jane