Advice, please Level One dissection after chemo?

GracieChase
GracieChase Member Posts: 11
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hello,

This is my first post. As my profile states, I was diagnosed with ILC in August 2012 (had regular mammos for 7 years!). Originally mass was thought to be less than 1 cm, no enlarged lymph nodes. Had BMX and SNB on 11/1 (do not regret BMX for a moment as only 44 and could not handle all the impending biopsies). Anyway, SNB showed 4 mm of invasion on 1 of the 2 sentinel nodes removed (other was clear). Surgeon recommended tamoxifen and possibly chemo. Both Oncs (saw 2) recommended chemo, so I did 4 rounds of Taxotere. I chose a mastectomy to avoid radiation and my Surgeon agreed it was unnecessary, as my margins were huge, and my tumor small (although multifocal).

Here's the question. The Sloan Kettering nomogram puts me at anywhere from a 12% to 25% chance of there being cancer on anotehr lymph node. But shouldn't chemo--and now tamoxifen--take care of it, if there is any? Should I risk lymphedema and have a Level One dissection?

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  • Gitane
    Gitane Member Posts: 1,885
    edited April 2012

    Hi Gracie,

    I'm assuming you were diagnosed last summer (2011) and treated last fall, right?  That means it has been almost a year now.  

    I had chemo (dose dense AC x 6), then bilateral mastectomies, and no rads, like you.  My oncologist felt that was optimal treatment for me (I asked him directly about the ALND and he said it wasn't worth it), and I had a lot more cancer in my breast than you had.  I had a few individual tumor cells and a few small clusters < .2 mm in 3 of the 9 nodes that were removed.  There were 9 removed because my nodes were tiny.  There was one cluster that was about 1 mm.  

    I know the ALND is being used less now in cases of small amounts of tumor in the nodes, based on research.  I don't know how having a mastectomy and no rads plays into this, though. If you're concerned, I think asking your onc, and/or a second opinion wouldn't hurt.  Would they even do an ALND this late after treatment?  I really don't know.

    I had the same question you are asking, so I know how it is. I thought about lymphedema, too.   I think chemo/tamoxifen (Femara in my case), are supposed to take care of the residual cancer (if any) in our breast tissue and nodes.  (as we haven't had rads to do that)  However, I'm no doctor!  I hate all this worry.  I hope you get your answers.  Hugs,  G.  

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  • wildrumara
    wildrumara Member Posts: 450
    edited April 2012

    I don't know what to tell you, but here is my story.  I had neoadjuvant chemotherapy, multi-focal tumors, close together, about 2.5 cm total.  I had a pretty good response as far as the tumors shrinking, but I did not have a complete pathological response.  I had imaging studies, PET, MRI, ultrasound, and there was no evidence of lymph node involvement.  Well, lo and behold surgeon did the SNB and I had 3 sentinel nodes and 2 were positive!!!!   My surgeon, who is the head of NSABP, did an ALND.  I had a total of 20 nodes removed.....apparently level 1 and 2???   I believe because I had neoadjuvant chemotherapy and still had positive nodes that was concerning to my breast surgeon; therefore, he did the ALND.  My friend who is a pathologist actually looked at my tumors and nodes and said there was no residual, dead tissue in any of the other nodes removed, which means that in all likelihood, there were the only two nodes that were positive.  Although that is a relief to me, it probably wasn't necessary to have the ALND, but my surgeon was playing it safe.  Hopefully I will not have LE down the road.  

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    GracieChase I had level 1 nodes removed on my cancer side (10 nodes) and a sentinel node biopsy on my LCIS side (4 nodes) (didn't know it was LCIS but MRI showed something).

    This is standard care to remove level nodes for tumors over 5cm even though there was no indication of an issue in the MRI or physical exam. (My tumor was thought to be 7 cm but total with IDC was probably around 6-6.5cm). My PS was pretty sure there would be micromets. Given the stats his thinking was correct but ended up no nodes were involved.

    I do have very mild LE in my left arm. If you look at my arms you wouldn't even know. Do I have regrets? No. I feel lucky that I didn't have node invasion. 

    But I would think that if they found node invasion they would want to do Rads. With Rads you  can get LE too. I personally would rather deal with my LE then get rads but that's me.

    You can check out this risk calculator although they don't have it for just level I lymphedemarisk.com/  

    You might also find this study interesting: www.ncbi.nlm.nih.gov/pubmed/20566977 
    and this article from the NYT: http://www.nytimes.com/2011/02/09/health/research/09breast.html?pagewanted=all

    ------------------------------------------------

    These are only a few studies but look very promising. They are not standard care yet but I do believe some Onc/BS are adopting this new prospective of not removing nodes.

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  • GracieChase
    GracieChase Member Posts: 11
    edited April 2012

    Thank you, ladies, for your advice. It seems everyone's story is so different that it's all just a roll of the dice. Yes, Gitane, I was diagnosed 8/11--my error--but finished chemo late February. They were going to converge a Level One dissection with my implant exchange, as I still have tissue expanders.

    Iago, I would like to avoid rads, too, so the millino dollar question is--is it the radiation that is making the survival rates similar in less than 3 lymph node cases or not--and does a mastectomy equal lumpectomy plus radiation--I keep thinking if this were happening five years down the road they would already know this! Ah, fate.

    Wildruma, I have heard that grade 1 tumors don't always respond so well to chemo, either, which is why I would still debate this--but that given my high ER/PR rate tamox and chemopause should starve the cells of estrogen--and they will die? Is this right? 

    Thank you!

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  • pupmom
    pupmom Member Posts: 5,068
    edited April 2012

    Gracie, what I recently learned to my dismay was that, yes, the hormonals will starve the positive cells, but the negative ones won't be affected. For instance I am 95% ER+. So 95 out of 100 cancer cells would be killed by my Aromasin. However, if any of those 5 out of 100 escaped into the body they would NOT be affected. Of course the odds are greatly in my favor, but I cannot know for sure that an ER- cell or two isn't "out there."

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    There is a higher local recurrence rate of  lump/rads than mastectomy. When this local recurrence happens they then go and do a mastectomy (I believe). Survival rates are the same though.

    The million dollar question is the studies don't answer that yet. I'm not as familiar with who gets rads for nodes and who doesn't because I was node negative. I actually was in a gray area for rads because my tumor was so large. Even with BMX tumors over 5cm usually get rads. My rad onc felt I was getting so much aggressive treatment she gave me a pass. I think she was also concerned about my heart since my IDC was in the upper outer quadrant of my left breast.

    Since you are highly ER/PR+  tamox should be a big gun for you to "starve off" any cancer cells, if there are any strays. The issue though is  local recurrence. I believe since we had this agressive surgery they do take  blood vessels so it might be harder for the tamox to reach the surgical areas. This is why they do rads and physical exams to feel for lumps.

    These are all things you should discuss with your onc/BS. I would bring in some of the studies/articles I posted and get their take on it. They are the ones with the medical degrees. They know if the studies have flaws, limited number of people and if the study is in fact showing the future of standard care.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2012

    GracieChase...Not sure of your menopausal status...however with a grade 1 tumor you might want to talk to your Medical Oncologist about ovarian suppression if you still are menstruating....If you are in chemo pause....it might not be worth it.  You can also look at the Zometa threads as well.....

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  • GracieChase
    GracieChase Member Posts: 11
    edited April 2012

    Iago, both my BS and a board at University of Rochester say the benefits of neither rads and/or ALND are worth it. But they are just going on statistics? My BS, especially, says that he thinks rads are over used, and can pose more long term risks and nebulous benefits. (I tend to agree that a second cancer risk seems absolutely pointless but I don't meet the markers for rads to begin with). T

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  • lago
    lago Member Posts: 17,186
    edited April 2012

    Gracie I would still talk with a rad onc (unless the rad onc was part of the board) to see what they say. Then YOU can decide what to do based on getting information from all sides.

    Remember my  rad onc gave me a pass even though I was in a gray area. I do believe the risk to my heart and secondary cancer also played a big part in that decision. Not all rad oncs want to radiate. 

    Your team seems to be weighing the risk/benefit rads. That's a good thing.

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