Axillary lymph-node dissection--Or no?

I am wondering--Is there anyone out there who has had involved axillary lymph nodes and who decided against axillary dissection after chemo and lumpectomy?  I have an active lifestyle, walking and biking and blading almost everywhere I go, carrying heavy bags on my shoulders ...  My 14-year old 1995 Altima just recently passed its 20,000-mile mark. I need both shoulders for my exertions. 

When I was first diagnosed with TNBC in July of 2008, three axillary lymph nodes were involved.  They shrank during the A-C and have been clear ever since, even when my tumor recurred during Taxol therapy.  I quit the Taxol after four of a planned 12 weeks and against the advice of my oncologist left the tumor installed while I tried another type of infusion with gemcitabine/carboplatin, my rationale being that I wanted to make sure the tumor responded before having the lumpectomy. 

After two cycles of G/C it was apparent that the tumor was responding, and so I had the lumpectomy and continued with the G/C, which is now almost done (only two infusions to go!). 

As I said elsewhere, I am at that point of having to decide whether or not to have lymph nodes taken out and examined.  I did have the three involved nodes that since are clear to ultrasound and palpation.  I was reading that even sentinel-node biopsy can cause such problems as axillary-web syndrome.  Right now I am leaning toward not having axillary surgery done, even though if cancer should come back to the lymph nodes after they have been radiated and they then need to be removed, lymphedema is almost a given. 

It also seems to me that it would be better to have it come back, if it's going to, in the lymph nodes than in the viscera. 

Any words of advice or experience out there? 

--jackie




Edited by ziggy0 - Apr 13 2009 at 1:04pm

Thank you, Nancy.  That is an interesting article. 

This statement makes me wonder:  "After surgery, the mean lymphedema volume reduction was 29% at 1 month, 36% at 3 months, 39% at 6 months, and 35% at 1 year." 

Does this mean that the benefits of the micro-surgery are limited--that the relief begins to decrease after 6 months?  To remain effective, would the surgery need to be re-done on a regular basis?  I see also that, as it has been performed by plastic surgeons, it would probably be considered 'cosmetic' and not paid for by insurance companies. 

I don't mean to be negative.  I just wonder how necessary it is to be at best eternally cautionary and at worst maimed for life. 

--jackie

Hi, Jackie. 

First, I want to address a comment you made at the end of your post: "It also seems to me that it would be better to have it come back, if it's going to, in the lymph nodes than in the viscera."   Unfortunately, it's not an either-or situation.  Coming back in the lymph nodes would not prevent it coming back elsewhere.  In fact, having it come back in the lymph nodes probably gives it more opportunity to spread elsewhere. 

As for radiation vs. surgery vs. both, that's a tough question.  Most women on this site would probably definitely have the surgery, because radiation might or might not kill any left-over cells.  I definitely would have it, just to know for sure that there was nothing left in those initially positive nodes.  If the nodes turn out to be negative, as is likely, then you can feel good about that and possibly even avoid the radiation of the axilla if you want to reduce your odds of lymphadema.  But like others have said, many,  many women have surgery and radiation to the axilla and still don't get lymphadema. 

What do your oncologist, radiologist, and surgeon think?

Love,
Denise
**btw, kudos to you for dropping taxol when it wasn't working and moving onto something better. 

I thank you both, Sharon and Denise, and Nancy too, for your encouraging responses.  Sharon, you asked what my oncologist, radiologist, and surgeon think.  They go by the book--My oncologist says the lymph nodes are absolutely safe from cancer when they're sitting in a jar on the pathologist's desk.  Ha ha. 

I'm just so torn.  I want to retain my quality of life, and there is no way to predict who is going to have problems from axillary surgery.  And, if they are taken out, that doesn't mean that the cancer can't come back elsewhere.  You know, 'the book' is not always right.  Later we look back on it and rejoice that we are not subject to those primitive and invasive sledgehammers. 

Why do I doubt my oncologist?  Well, in the course of my treatment he has already been seriously wrong.  During my third infusion with Taxol I found the lump, the tumor returning.  I found him and told him about it.  He examined it and felt it also.  And do you know what he said?  "Let's keep an eye on it."  Keep an eye on it?  What for--To see how big it gets by the 12th week of ineffective Taxol? 

However, I was confused and wanting to trust and so I accepted his words.  The next week I went back for my fourth Taxol infusion.  My oncologist was out and his PA felt the tumor, which was growing fast, almost as though the Taxol were feeding it.  She urged me to have the Taxol anyway.  "It will get the little tumor cells," she assured me.  I said, "If it doesn't get the big tumor, why should it get the little tumor cells?"  "Trust me!" she beamed.  I went along with it, getting that useless fourth infusion of Taxol that has permanently disrupted the hair patterns on my body (thinned and grayed them), and meanwhile the tumor is surging on.  Then we're up against the holidays and it took two more weeks until I could meet with my oncologist, who at that time urged me to have the tumor out.  But why have it out and then have another round of chemo that 'should work, since it works on almost everybody,' like Taxol, but if it doesn't work in the absence of the tumor I have no way of knowing that?  So, against his wishes, I had two cycles of gemcitabine/carboplatin and, when the tumor indicated its receptivity to the combination by shrinking, then I had it out. 

My question to the medical establishment is this.  Why do we not have neoadjuvant therapy, with the tumor resident, whenever possible, so that people know that their tumors are indeed responding to the chemicals?  After adjuvant therapy, when the cancer comes back, how many times does it do so because it had not responded to one or more chemotherapy drugs, but in the absence of the tumor, nobody knew? 

So, yes, I do mistrust my oncologist, to a certain extent.  I question 'the book.'  I need one of those bumper stickers--Question Authority--except nobody would see it since I almost never drive.  Ha ha again.  

I see from your sig, Denise, that AC didn't work.  Isn't AC supposed to work on everybody?  There goes that darned book again, being wrong. 

I still haven't made up my mind about this and would welcome any more words of advice or experience or feeling or thought about this, the question of axillary surgery, that anyone might want to offer. 

-jackie-

Hi Jackie,

Hi all.  On a slightly different note, I have had two CA27-29 tests, both after the lumpectomy--the second one I just got the result from today.  The first one was a little high at 40 (supposed to be under 38) and this last one was a little higher still at 50.  I know that CA27-29 is not reliable enough to be considered diagnostic--it is supposed to be used to confirm other tests, if other tests have been used.  In the case of axillary dissection, there really aren't any good ways to test for micrometastases other than to dig out the nodes.  I wonder if anyone else out there has anything to say about CA27-29--whether or not it has been useful as a correlation for anyone.  Of tumor, of metastases, of anything? 

I'm really off to get that chemo now.  So glad this forum is here--there aren't many people to talk to at this level of detail about all this.  Thank you all. 

-jackie-

Connie you did not have bloodwork done?  Or was it for specific markers such as the CA27-29?  If so that is horrible!

Jackie,