DCIS STAGE 0 pn0(i+)

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agada
agada Member Posts: 452

In Jan I had a bileateral mastectomy done for DCIS stage 0.  I have a high family history of breast cancer.  My cancer was pn0(i+) in two axillary lymph nodes but not the
SLN and was cribriform.  In on lymph node I had an area 0.2 mm in size and in the other lymph node I had a few free floating cells by histological staining.  my DCIS was multifocal in nature.

I am not receiving any treatment and was told I had a 99% chance of the cancer NOT coming back.  went for two more opinons on treatment. One agreed with my oncologist in not treating me another wanted to treat me. 

I was so afraid of my diagnosis my oncologist had another pathologist recut all of my specimens and he said there were no changes in the diagnosis.  I have been discharged into the care of my regular physician. Is this all normal for DCIS?  I am so upset over all of this I am now seeing a counselor just to get by.  Thanks for listening. Nothing has been scheduled for follow up exams.

Agada

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  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited August 2010

    Agada,

    My oncologists told me that if you opt for double mastectomy, that they have confidence that there is no recurrance possibility for DCIS. I did not opt for one, but it did make me think twice, since the prognosis was so good for this type of treatment.

    Hope that helps.

    Peace to you.

  • Barbie7
    Barbie7 Member Posts: 386
    edited August 2010

    Agada, I'm sorry for your diagnosis.  It was not clear to me, did you have node invovlement?  If you did, then technically you are no longer stage 0/DCIS because by definition DCIS cannot spread.  Did I read your post incorrectly?  Beesie has some really nice posts on here relating to early stage cancer.  If she doesn't come along and post here, you can search for some of her threads.

  • agada
    agada Member Posts: 452
    edited August 2010

    The SNL was neg but two axillary nodes were called pn0(i+).  One node had a clump

    of cells <0.2mm in size and one other had a few free floating cells.  What does this mean now?

    So confused. Thanks again.

    Agada

  • Barbie7
    Barbie7 Member Posts: 386
    edited August 2010

    Hmm, I haven't heard of pn0(i+), but then again, I'm not a pathologist.  Hold on, I'm sure someone will come along soon with more information.  Hugs to you Agada.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2010

    pN0(i+) is a subcategory of pN0, meaning Node Negative.  The (i+) means that there were 'isolated tumor cells' (ITC).  Isolated tumor cells are defined as "single tumor cells or small cell clusters not greater than 0.2mm, usually detected only by immonohistochemocial (IHC) or molecular methods but which may be verified on H&E stains. ITCs usually do not show evidence of maligant activity e.g., proliferation or stromal reaction."  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf  (I think you need to register to be able to view this file.)

    So what this means is that pN0(i+) is considered to be the equivalent of being node negative.  And what this means is that anyone with DCIS who has this pathological finding and who otherwise does not have any invasive cancer (i.e. no microinvasions) will be considered to be Stage 0 (i.e. pure DCIS).  The (i+) designation is noted next to the N0 simply to inform anyone looking at the file that these ITCs were found. 

    There is some debate as to what the presence of ITCs means.  In many cases (most cases?) it's assumed that the cancer cells were somehow transferred to the nodes, possibly by the surgical tools.  When the diagnosis is pure DCIS with no evidence of microinvasion, that seems to be a logical assumption, particularly since by definition, ITCs show no sign of malignant activity (i.e. these are not active growing cancer cells).  For those who have invasive cancer, this explanation can be questioned and in fact recent research has shown that women with invasive cancer who have ITCs and who aren't given chemo have a less favorable prognosis than those who get chemo.  But I've searched about a dozen articles on DCIS and ITCs and there appears to be no evidence that the presence of ITCs in DCIS patients has any implications.  So the explanation that the isolated tumor cells landed on the nodes by accident, from the surgical instruments, seems to hold for those who have pure DCIS.

    Agada, what that means is that your diagnosis is in fact pure DCIS, your prognosis is assumed to be the same as it would be with pure DCIS and your treatment will be the same.  After having a bilateral mastectomy for pure DCIS, normally there is no other treatment, except for monitoring.  The only thing that surprises me about what you were told is that your surgeon and/or oncologist is not continuing to follow you, at least for a year or two.  In my case, I wasn't turned over to my regular physician until 2 years had passed and during those 2 years, I had 6 month follow-ups with the surgeon (I also could have seen the oncologist but chose not to).  So while your treatment seems to match up with standard practice, personally I think you are being sent off too quickly.

  • Barbie7
    Barbie7 Member Posts: 386
    edited August 2010

    Beesie, Thank you for your explanation of PN0(i+).  I had not seen that designation before. 

  • agada
    agada Member Posts: 452
    edited August 2010

    Does this mean the cancer can spread If it gets loose in a lymph node?  Thank you for the good explanation.  I am seeing papers from the EU, expecially the Netherlands, that they treat DCIS

    pn0(i+) now with chemo and/or radiation.

    Agada

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2010

    Yes, cancer can spread if it gets loose in a lymph node. But most likely with DCIS pN0(i+) you don't actually have invasive cancer in your lymph node.  Although a small number of cancer cells were found in your nodes, the fact is that DCIS cancer cells cannot move into the nodes on their own so if in fact you do have pure DCIS, the only way that these cancer cells could have gotten into your nodes is if they were carried to the node by a surgical instrument.  A DCIS cell in a lymph node is harmless because DCIS cells do not have the biological capability of spreading.  I think this is probably why there seems to be no difference in prognosis (from the articles and studies that I've read so far) in those who have pure DCIS with no nodal involvement and those who have pure DCIS with pN0(i+) nodes.

    In North America, treatment guidelines for DCIS pN0(i+) are the same as treatment guidelines for pure DCIS.  Having said that, if it were me, to be on the safe side, I probably would opt for radiation to the lymph nodes, if I was given that choice.

  • agada
    agada Member Posts: 452
    edited August 2010

    Yet another question.  I had implants put in after both breasts were removed.  My doctors said that I dont need mamograms anymore.  Is this true? Do I need a PET scan or an MRI instead?

    Also, no treatment options were offered to me.  Just go my way and be happy with the results. I think I will make my own follow up visit with my oncologist for peace of mind. 

    You have been so helpful and full of information I cannot thank you enough.

    Agada

  • almagetty
    almagetty Member Posts: 316
    edited August 2010

    I won't be getting mammograms anymore on my mastectomy side, only on my remaining natural side. My oncologist has ordered a yearly chest x-ray to check my mastectomy side, but I don't think that a lot of the other ladies here get that. Ask your oncologist if that is something that he/she would recommend. I believe that your PS should order an MRI every few years to check on your implants. Check with his office.

  • agada
    agada Member Posts: 452
    edited August 2010

    Hello Again,

    I have finally gotten the nerve up to make my own follow up appointment with my oncologist since you feel he has discharged me so quickly.  If he refuses to see me then what? would I be out of line in finding another oncologist?  My primary care physician has yet to do anything about a follow up with the cancer either. Sorry to keep harping on this, but I am reading more and more papers and it seems that follow up visits are very important. 

    Agada 

  • agada
    agada Member Posts: 452
    edited August 2010

    Hello yet again,

    I did try to make an appt with my oncologist and my surgeon for follow up visits.  neither will see me.  Now what do I do? Just stick with my regular doctor for checkups?  what kinds of tests should I ask for when he does blood work for my thyroid?  Thanks for all of your help.

    Agada

  • CandDsMom
    CandDsMom Member Posts: 387
    edited August 2010

    Agada- I am so sorry you are going through this!

    I would seek a 2nd opinion - I can't believe they won't see you for a follow up!!!  My oncologist wants to see me every 6 months for 2 years then every year therafter.  My BS wants to follow the same schedule!

    I got a 2nd opinion at Mayo Clinic and was very happy with the level of service.  I tried to see someone at MD Anderson but they also refused to see me.  If travel is not an option for you, I would make an appt with an NCI center affiliated oncologist for a 2nd opinion.  You should be heard!  take care!

  • winter1NY
    winter1NY Member Posts: 46
    edited August 2010

    Agada

    I had skin-sparing BMX and BS told me to come in every 3 months for follow-up for the first two years.(I have never seen an Onc was told no need) BS does full breast exam on follow-up visits, so it sounds like you should be getting some also; was it your BS who said you don't need it??

    I was also wondering why no blood work/PET scans etc. will ask him this next appt.

    Also thanks almagetty am going to ask about chest xray as well as I was thinking if one had a recurrence (lets say on the chest wall) how would it ever be found??

    best wishes to all

  • iHEARTu
    iHEARTu Member Posts: 213
    edited August 2010

    This is topic SOOOO interesting!! I had no idea about this kind of diagnosis. Thanks Bessie, as always so informative. I'm grateful you share your incite!

    -c

  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited August 2010

    I had pure DCIS and follow up with breast surgeon first every three months and now every six months for five years.  I have no additional tests done after bilateral mastectomy.  Interesting about chest xray.  I just was told that any reoccurrence would be felt; thus the visits to my breast surgeon.  I sometimes get nervous about no other additional testing too; especially when I read some stories about people having DCIS and then having problems with breast cancer again.  However, I am trying to live one day at a time and try not to waste time worrying about something that hopefully will never happen.  Sometimes easier said than done.

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