Who knows about nodes?

JoanQuilts

I can't find anyone else with this situation.

I am a second time cancer survivor.  The first time, 19 years ago, I  had a lumpectomy and 10 negative nodes were removed.

This time, with a new primary tumor, the sentinel node biopsy was attempted, but they couldn't identify (map?) a sentinel node.  My surgeon is excellent and I trust her skills completely.  The tumor was only 9 mm, no LVI and grade 3.  I had a bilateral mastectomy and have just started chemo.

Both my surgeon AND my oncologist consider me node negative.  When I asked why they said because the tumor was so small, I guess because there was no LVI, etc.   So they are treating me as a node negative woman with a very small, grade 3 cancer,  meaning TC x 4.

But I asked them, what if I'm NOT node negative?  How do we know?  I don't understand why in my case a node wasn't accessible.  Is it because 10 were removed 19 years ago (the new tumor was on the same side).  

I am making myself crazy about this.  Can someone shed some light?

CoolBreeze

It is possible that the first time around messed with the mapping of the nodes and made it impossible for the sentinal node procedure to work; I have heard that story many times on this forum.

I think it's very likely that you are node negative.  You had a very small tumor in only one area and the chances of it having spread are small.  You were successfully treated 19 years ago and there is no reason to think you won't have the same result.

The reality is, the method they have of staging now is pretty old-fashioned.  With newer understanding of cancer, more importance is placed on the biology of the tumor rather than size and nodes.  You will see many women in the Stage IV section who had no nodes (like me) so it's less important than you may think.

For a triple negative cancer,  it sounds like you are getting the same treatment you'd get whether you had a positive node or not, so I would try to put it out of your mind.  It doesn't matter.  

I know that we all want to know the future and look to things like grade and nodes and size and as prognostic devices but we have to let that go and just do the best you can with what you know. You are getting appropriate treatment and you survived before so I would just try to be very positive about this and let what you can never know go.

Good luck! 

JoanQuilts

Oh my gosh, Ann - you're the But Doctor I Hate Pink lady!  I read you all the time via FB!

Thank you for your response.  I had honestly never heard of anyone for whom the mapping "did not work" and would love to hear from others about their experiences.

The reason I bring this up is because 1) I mentioned it to my oncologist and he said, let's see how you tolerate the TC x 4; maybe we can consider giving you TC x 6 - which I think would be the treatment of choice with a couple of positive nodes and a tumor of my size.  While that would be the safe, conservative thing to do, I was devastated to hear that I might have to do a couple of extra treatments.,  4 treatments 3 weeks apart had seemed so doable - an extra 2 - well, maybe I'm just being a baby here.  2)  You said that with greater understanding of biology, size and nodes are less important than biology.  But my biology WASN'T very good - triple negative and Grade 3.  So I am betwixt and between, as they say.  I'm "just" a worrier.

Since you're a breast cancer blogger (and so happy to "meet" you as I said, I've been reading you for a while), I'd like to direct you to MY blog.  It's not a bc blog per se, it's a humor blog in which I deal with my new diagnosis, among other topics:

http://www.joanoliveremmer.com/?p=552

http://www.joanoliveremmer.com/?p=591

http://www.joanoliveremmer.com/?p=608

 Thank you again Ann

CoolBreeze

Hi Joan,  

Thanks for reading, I appreciate it!  Well, you will certainly get women here who have more knowledge than I do about this, but I know I've read women post here who were unable to have an accurate sentinal node biopsy.  Hopefully, one of them will chime in soon.  And, I realize you are triple neg but I am hoping the smaller size will help mitigate the more aggressive biology.  My main message is the same though - if there is no way to know something, than there is no point obsessing over it.

As for your treatment, that does make a bit of a difference.  You may find that chemo isn't that difficult and then just go through the other two.  What is six more weeks?  On the other hand, there are people who don't tolerate it as well as I did and six weeks may be rougher than for me.  I was very tired by the last two but it was not impossible or horrifying or anything like that.  You'll find out.  And, as you know I became Stage IV and then have been on chemo ever since, which has been fine for me.  Navelbine I found even easier than TCH.  

Read my tips on how I handled it, and there is a thread here about tips for getting through chemo which will give you lots of help.  It is so important to drink water!

I'll check your blog out, and if you want, we can do a link exchange.  PM me.

undercoverebel

JOANQUILTS-I was given 2 types of dye and it still didn't highlight the lymph node path. I live not knowing for sure if i'm positive. Any they say it can only be done then,not later. Why? I don't know.

JoanQuilts

Thanks for your response undercoverebel!  I didn't know they even did node biopsies in the case of DCIS, since there's no chance it could have spread outside of the duct?

hrf

Joan, sorry you are going through this for the second time. I also did 2 times but for me the second time was on the other side. I had 4 lymph nodes involved and still did only 4 x TC    I was told that was the standard. I was glad not to do the extra 2 times - the 4 was enough

undercoverebel

Well my GS was very thorough, she knows cancer doesn't play by the rules. But Murphy's law intervened on my node test so you live w/the uncertainty.

luckypenny

Hi Joan



My sentinel node biopsy didn't map either when I had my mastectomy. So my bs went in and took 17 nodes and did have positive nodes. BUT........I had a huge tumor and some lvi both of which is different from you. I don't know if this helps but good luck to you. I know it's hard to not have all the information that you would like