Help with a missing tumor.

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doudoulong
doudoulong Member Posts: 8
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi, I am new here and newly diagnosed of IDC. I had simple mastectomy last month. I have been very worried about a missing tumor after surgery.

The biopsy shows two tumors:
A: 1.5cm, behind nipple, ER+, PR+, HER2- (score 2+, FISH negative)
B: 0.8cm, 12 o'clock, ER+, PR+, HER2+ (score 3+)

Surgical pathology shows only one tumor, the bigger one behind nipple. The other one is missing and even the clip placed during biopsy is missing too.

According to the surgical pathology report, there are two specimens for the breast:
1. left breast, simple mastectomy (lateral aspect of left breast skin);
2. left breast tissue (re-excision with evaluation of margins).
It seems that my surgeon removed additional tissue after removing the most part of my breast. Has anyone of you had same experience?

I have very small breasts and I don't know if this caused difficulty for surgery. My surgeon has 20 years experience. I hope the re-excision is not a problem. What do you think?

I am now guessing that the missing tumor is just in between those two specimens. All doctors said, most likely, the tumor is not in my body. But seeing that all doctors are saying I have a hard case, I am extremely nervous. I tried to ask if I can have Ultrasound or MRI to make sure no residual breast tissue in my body. No doctors think it will help. I have been down with fever and nausea for the last four days and I have kept thinking if this is caused by the missing tumor. This is too hard. Just want to know your comments. Any advice will be highly appreciated.  

Also, this missing tumor cause different opinions on my treatment plan.
The first oncologist I saw recommended TCH*6 with H for 1 year. She said even score 2+ is not good and even a small HER2 positive tumor means chemo is needed.

The other oncologist I saw said if the missing HER2 positive is too small to find, she doesn't recommend chemo if the oncotype score for the bigger tumor is low.

I will seek second opinion pathology review. Hope they can find something definitive. I've heard too many "very unlikely"and "most likely".

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited May 2012

    Oh, doudoulong, I can't speculate as to what happened to your missing tumor...but I will tell you what happened to me.

    I was dx'd with DCIS, and after 7 diagnostic procedures (diagnostic mammos, ultrasounds, ductogram, and two US-guided core-needle biopsies) they finally found a small amount of IDC. We're talking SMALL: 1.5mm and .5 mm. The DCIS was much larger.

    In fact, on the final pathology report, I was not surprised to see that the DCIS was larger than the biopsies had shown. I knew this was common.

    What I WAS surprised about, though, was that there was NO MENTION of any IDC in my breast tissue after my BMX!!!

    I asked the BS and the Breast Care Coordinator where it had gone. They both said that the core-needle biopsies probably got it all, and that this was a common occurrance.

    In my case, though, they did find the clip the Radiologist had placed during one of the core-needle biopsies.

    I hope you find answers that bring you peace of mind!!!

    Also, please let your doctor know about the fever and nausea.....

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2012

    The clip if it's still in the chest area should show up on ultra sound, or Xray(I think). They are made of titanium. I had clips placed during biopsy for 2 adenofibromas(sp). No mention of these following my BMX. Pathology report only mentions my 2 IDC tumors surrounded by lots of DCIS. I always wondered why. Hope you get this sorted out soon.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2012

    Wow, I've never heard of anything like this. Sorry you're going through this. How stressful. It sounds like you're doing all the right things--getting opinions of diff. MOs and diff. path labs. 

    Not sure if this is helpful, but my tumor was 0.5 cm and it didn't disappear. Mine was at the 11 o'clock position on my right breast but very close to the skin (about 1 cm down). Perhaps if your tumor was closer to the chest wall, that why there might be a question. MRIs have the best resolution so maybe that would help. I'm no doctor but I can't imagine that a 0.8 cm tumor could move throughout the body. I wonder if there was a screw up in the path lab. Any chance they lost the tissue samples? Who knows? Good luck. Who needs this on top of everything else? How frustrating!! 

    Edit: Just thinking about this some more, I wonder if it would help to talk to a cancer advocate or someone at a cancer legal defense group. (who advocate for patients.). I'm not saying you have a malpractice suit (I'm no expert on that) but if it were me it seems like question number one would be: where is the tumor? In my body or not?  I suspect the answer is a scan and your surgeon should be the one going to bat for you w/ your insurance company. (since it's an unusual situation I suspect the insurance company's first response is that they won't authorize it). But i don't know and because this is so unusual, perhaps an advocate could help. FWIW, there have been posts here (somewhere) on different advocacy groups--maybe if you can't find them you could post in the financial forum. 

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  • doudoulong
    doudoulong Member Posts: 8
    edited May 2012

    Thank you, everyone. I am so glad I posted my experience here. I read every word of your posts. Your support means a lot to me.

    The third oncologist I saw today said the second opinion pathology review is the same as the original one and he will bring my case to their weekly case study for more discussion before he can recommend a treatment plan. It has been four weeks since my surgery. I think I should start chemo ASAP but there are still no answers to all my questions.

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