DCIS, invasive thoughts???

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Kim137
Kim137 Member Posts: 183

I was originally diagnosed with DCIS on biopsy. Had a sentinel node biopsy done prior to mastectomy during another surgery, 1 out of 2 nodes had isolated tumor cells, micro metastasis. My surgeon and I opted to remove more nodes at the same time of my BMX. The final path report still shows that I "only" had DCIS throughout my right breast, nothing in left breast and all 14 lymph node removed at the time of the mastectomy were negative. I am ER + (2%), PR - and HER2+++. my surgeon didn't think I'd need any further treatment. He believed the positive lymph node was a result of "displaced cells". My oncologist on the other hand believes there may have been a true invasive component and we need to treat this aggressively since I am only 31. She is suggesting A/C x4 followed by Taxol x 4, Herceptin for one year and tamoxifen x 5 years. I would love to hear from others on this matter. Most people I come across who have gone on to do chemo or rads have found an invasive component on their path reports.

Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2011

    Kim, I'm no doctor but because of the lymphnode involvement all be it minor, I would not take chances and do as your onc is suggesting and go for the chemo.  I wish you well in your decision.

    Love n hugs.  Chrissy

  • Kim137
    Kim137 Member Posts: 183
    edited November 2011

    Thanks Chrissy, I am scheduled to start chemo this Thursday. Port was put in Tuesday. I have to admit I was let down to learn that I'd need chemo when this whole time I thought I had gotten thru the hard part, the mastectomy. Now it seems like I've only passed a bump on this long, winding road. I'm just curious to see if anyone has had a similar fate. Although I wasn't happy to hear I'd been getting chemo, I completely understand the need to be aggressive. My surgeon told me I'd look back on this year and say to myself it "SUCKED!" but hopefully I'll live to be 92 and tell about it! ;)

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2011

    The problem with BC is it's so sneaky!  Your onc is right to tell you that this year will indeed suck but it would suck more if you did nothing and it came back sometime down the road.  This way you can say you have done everything possible to safe guard yourself.   Good luck with your first chemo and remember, that all drugs give side effects but you don't have to put up with them, tell your onc or onc nurse and they will give you something to alleviate the SE's.

    There should be a thread that is for November chemo, perhaps you might like to join there as the girls will be going through the same thing as yourself and you can compare notes so to speak and continue to support each other through this time.

    Love n hugs.  Chrissy

  • xtine
    xtine Member Posts: 131
    edited November 2011

    I'm really not an expert here, but your situation sounds awfully fishy to me.

    Isolated tumor cells are not the same as a micro-metastasis. Isolated tumor cells are considered node-negative, while a micro-metastasis is more cells and considered node-positive. I had isolated tumor cells but told that the finding shouldn't factor into my treatment.

    In addition, it's my understanding that HER2+ in DCIS is not necessarily indicative of more aggressive cancer. Studies haven't conclusively showed that HER2+ DCIS has a worse prognosis, and if people do progress to invasive cancer, often the invasive portion is HER2- (or HER2- DCIS progresses to HER2+ invasive cancer).

    Finally, as has been discussed recently in some recent situations on this board, a small HER2+ cancer doesn't necessarily warrent chemo or Herceptin (I believe the threshold was mentioned at around 6 mm)?

    I know you're scheduled to begin treatment, but it might not be a bad idea to get a second opinion.

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2011

    Hi, Kim... Let me give you some random thoughts about your situation...   First, I think you would really benefit from a second opinion on your pathology.  The "DCIS only" dx doesn't square with the micromets in your node.  

    Secondly, while your BS may have a sound opinion, it's normally not up to a BS to make the call on whether or not we need chemo, anymore than it's up to an oncologist to do surgery.  

    The fact that you had bc cells in your node -- even micromets -- with an Her+++ bc doesn't leave any room for the wrong judgment call here.  Your bc obviously knows how to travel, and if I was in your situation or you were my daughter, I would want input from more than one oncologist re. what's best -- and preferably oncologists who have a lot of experience with Her+++ bc.

    If you are within a few hours of an NCI-designated cancer center, I would really urge you to get a second opinion on both your pathology and the possible need for chemo.  Here's a list of those top, very experienced facilities.    

    http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

    If there isn't one within a reasonable drive of where you live, call the closest one and see if they can recommend an oncologist in your area.   

    (((Hugs))), and please keep us posted on your situation!   Deanna 

  • Pessa
    Pessa Member Posts: 519
    edited November 2011

    Kim, Sounds to me like you are doing the right thing by going forward with the chemo.

  • Beesie
    Beesie Member Posts: 12,240
    edited November 2011

    Kim,

    Was the HER2+ status based on an assessment of the DCIS cells in your breast, or was the micromets in your node checked for HER2 status?  As xtine mentioned, HER2 status can change - DCIS is often HER2+ but IDC is HER2+ much less often and within a single diagnosis, the status can be different between the DCIS and IDC components - so finding out the HER2 status of the cancer in your node is very important.  

    I agree that a 2nd opinion is in order from another medical oncologist.  And if not already done, a second review of the pathology, both of the DCIS in your breast and of your node, would also be a good idea.   

  • jpmercy
    jpmercy Member Posts: 189
    edited November 2011

    hi Kim,

    I was dx with DCIS July 2010 I was 30 also. I had BMX and then found invasive 2mm component ay was her2+ my doc was so thrown by me bc of my age I went with the chemo I did 12 weeks of weekly taxol. And a year of herceptin the key was herceptin and with her2 I travels fast. PM me if you have any questions of need support being 30 with bc is not easy! I also used penguin cold caps and did not loose any of my hair during treatment. Let me know uif u want information on it!

  • iLUV2knit
    iLUV2knit Member Posts: 157
    edited November 2011

    Hi Kim137, My BMX sister!!  I say do whatever it takes to make you get to that ripe ol age of 92.  You are a young woman and certainly don't need to find out down the road that you "should have" done more. 

    We will be here for you while you are undergoing your treatments for chemo. I say, listen to your oncologist!  HE is the one who knows all the latest, best and recommended treatments and he IS the doctor :-)

    Message me if I you need to talk or anything.  I am a computer stroke away!!

    (((((Hugs to you))))))

    Sue

  • Kim137
    Kim137 Member Posts: 183
    edited November 2011

    Thank you ladies for all your input! There is such a gray area with cancer, but I've decided to proceed with the chemo as scheduled. After reviewing my pathology I've been bumped up to a Stage 1 with micro-mets.

    iLUV2knit, it is so good to "see" you! love the new pic! I agree with being more aggressive and not having to look back and wonder "what if". I love my medical team and feel comfortable with them caring for me. My oncologist is a SHE and absolutely great! I'll keep you posted on how things go and please keep in touch, let me know how you are feeling. Hope all is well and you're getting better daily! (I'm sure we'll chat tomorrow after my first round!)



    :)

  • alliesmom15
    alliesmom15 Member Posts: 106
    edited December 2011

    My first oncologist wanted to do a year of Herceptin and 6 months of chemo.  I had small amount of micro invasion, so small they couldnt measure it.  I had a BMX with no node involvment out of 20.  I was so upset because the measures I took I thought would be enough.  I got 2 more opinions, one from a specialist at the university of Utah and a roundtable discussion of my surgeon, oncologist, pathologist and a radiologist and the majority said the risks would far outweigh the benefits.  

    It would'nt hurt to get a second opinion.

    Good luck with your decision  

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