insights anyone?

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js37
js37 Member Posts: 77
edited June 2014 in Stage I Breast Cancer
insights anyone?

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  • js37
    js37 Member Posts: 77
    edited January 2010

    i've recently been diagnosed with idc with a complex cyst component.  i had a lumpectomy, but i have a question on size. (and have had this question from the beginning but no one seems to be able to give me a straight answer)

     so apparently what i had is rare.  there was the tumor, with a cyst that grew out from it.  the cyst would continue to fill with fluid (fluid was abnormal cells, and the wall of the cyst was cancerous) and grow, then would collapse with aspiration & with the core biopsy.  at first aspiration was 2.8 in size, then filled back up to 2.6 in size at core biopsy where it collapsed again, then filled back to 2.8 in size on ultrasound when they were doing the wire placement for the lump. it drained a little when they stuck the wire in and when they took it out during surgery, it was 2.4 (this is the tumor & the cyst size together).

     on my path report they say that the actual tumor mass is just a little over 1cm, but because of the cystic component, even though the recognize there is some overestimation, they are using the 2.4cm as the size for staging, putting me in stage 2.  i have no lymph node involvlement.  anyway, i'm just confused about this - i don't understand why they would count the cyst in size?  i mean, if more had leaked out during the wire, the size would have been smaller.  if they would have taken it out at another time, it would have been bigger.  if they would have aspirated it, it would have been around 1cm.  

    every time i ask, i seem to get this run around answer that it's rare & that is the best way they know how to asses size...which sounds like to me, they have no freaking idea themselves.  but the tumor size plays a part, so i would think they would want to be accurate.  i feel like i'm sort of in this "shrug our shoulders, not sure so lets just stick her in this group" sort of limbo with no definitive answers.  i've searched and searched online and can't seem to find any research on my particular type of tumor, just keep finding papilloma carcinoma which they say it's not.

    has anyone heard of this sort of thing?  anyone with the same sort of dx?  maybe i'm focusing on the wrong thing, but i want to know the *actual* size of my tumor.  

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited January 2010

    Js37,  I don't know the answer to your question, but I do want to offer you support and encouragement.  It is all so confusing in the beginning.  Love and support to you!

  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2010

    Js, my situation was kind of similar - I had a solid tumor with a cyst attached to it. Overall, the tumor plus cyst was 3.5 cm. The difference is that I had a VAD biopsy which took pretty big hunks out of the tumor and cyst. That totally deflated the cyst part and it didn't refill. There is nothing on my biopsy report about the fluid that was vacuumed out so I don't know if there were cancer cells in the fluid. When the lump was removed, part of the solid part was DCIS, part was IDC, and the remaining wall of the cyst was benign. The IDC part was 0.9 cm. But it is possible that it was bigger before the VAD took hunks out of it and it is possible that part of the cyst wall that was taken out had cancer cells - especially since the path for the VAD was chosen to take the most suspicious parts of the lump. 

    Tumor size is always an approximation anyway - they are looking at the longest dimension rather than the volume of the tumor. A long skinny tumor could have the same "size" as a round ball shaped one. Anything between 2 cm and 5 cm with negative nodes makes it stage IIa. If it was between 1 and 2 cm it would be stage Ic.

    In any case, I don't think this makes much difference for your treatment decisions so you don't need to focus on it too much. It is more important that your tumor is hormone positive and HER2- (both are good factors) and that it is Grade 3. The NCCN practice guidelines for breast cancer take the same path for any tumor over 1 cm (and even for any tumor between 0.6 and 1 cm with unfavorable features which includes grade 3). 

    Another factor is the results of the oncotype. Grade is one way of determining how aggressive cancer cells are. It is done by looking at features of the cells under a microscope to see if they are more close to regular cells or more different. It is a somewhat subjective measurement. Oncotype isa another way of determining how aggressive the cancer cells are. It looks at the genes in the cancer cell to see how many are present that lead to aggressive growth. A score less than 18 says that recurrence risk is low and hormone therapy should be enough. Above 31 says that recurrence risk is high and you should probably have chemo. Between those two numbers is intermediate risk and a gray area for chemo (there is a clinical trial underway to see what the outcomes are for chemo vs no chemo in this range).

    I hope that your oncologist or surgeon has ordered the oncotype test. 

  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2010

    That last post had a lot to absorb in it so I'm breaking how I dealt with the uncertainty on my tumor size in this post. My tumor was hormone negative and HER2 positive. The post surgery pathology said it was 0.9 cm but I was concerned that it might have been over 1 cm before the VAD biopsy took big bites out of it.

    HER2 positive, hormone negative cancers tend to be very aggressive so the NCCN practice guidelines say consider chemotherapy and Herceptin if it is between 0.6 and 1 cm and have chemo if it is over 1 cm. I decided to have chemo partly because I was concerned about the accuracy of the size - my tumor may have been over 1 cm before the biopsy. 

    About mid-way through my chemo in December 2008, MD Anderson released results from a retrospective study of women with tumors less than 1 cm who hadn't had chemo. It turned out that the recurrence risk for HER2+ tumors in that group was higher than previously thought  - about 23% so that made me sure that I had made the right decision. I'm glad that I considered my upper estimate of what my tumor might have been when making the decision.

  • weety
    weety Member Posts: 1,163
    edited January 2010

    Bluedasher, I am curious as to why they only do the oncotype testing with HER2 negative tumors.  I have read that it is because with HER2 + tumors,  the number would always show up high enough to warrant chemo anyways, so why bother.  It still seems like it might be a valuable number to have.  Do you know anymore about why they don't do it on all tumors? 

  • mmm5
    mmm5 Member Posts: 1,470
    edited January 2010

    Hi Weety

    My Onc actually did order it on me and all it did was depress me and come to find out the info just was not very accurate as all Her2 grade 3 tumors will have a very high oncotype, mine was 44 and I have spoken to 3 other Her2 gals grade 3 that were even higher than I. The problem is they show the effect of chemo on that tumor and it is not correct as they use a form of FAC/chemo to demonstrate effectiveness and that does not work on Her2 tumors. In addition they have not incorporated Herceptin into the equation which I think is a bit behind the times.

    Speaking from someone that has been through it I think it is a waste of money for Her2 node negs as you can see the data on the Her2 Joint analysis and it will give you a much better picture.

    I am sure some may disagree and just know this is my opinion.

  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2010

    Like mmm said - it would just be a waste of money. The OncoType test is to help you decide if you need chemo or not. If you are HER2+, you already know that recurrence risk is high without chemo. I don't think Oncotype says anything about recurrence risk after chemo and Herceptin so the number wouldn't be meaningful.

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