The strangest twist yet

zayb

I received the path report over the phone today. 4 nodes were removed along with the fat pad and including the enlarged node that was biopsied by FNA. The surgeon had the ultrasound images when doing the surgery and found an enlarged node in the same area, same depth as the one evident on ultrasound.

Pathology from excisional biopsy: No cancer was found anywhere. Nothing in a lymph node, nothing in the surrounding tissue, NOTHING. If anyone has been following what has been happening with me in the last few weeks, I had an enlarged node on the side I had previous dcis diagnosis.

I say, "I don't know what I am suppose to think." Surgeon says "You have metastasis in a lymph node." Of course, the obvious question, "Which one?". Well presumably the one that exists in virtual reality. Apparently it doesn't matter because FNA showed cancer even though the excisional biopsy didn't, so treatment will proceed based on FNA findings.

I am halting all appointments now, and will be seeking a second opinion elsewhere. I feel like everything has been moving too fast anyway, but someone has to give me an explanation about the discrepancy between the two biopsies. I don't feel satisfied with the idea that somehow the enlarged node got lost, but we have to presume it is there somewhere and just treat on that basis. The surgeon said he removed the only enlarged node he could see and in the same area as the ultrasound indicated. I kept telling them that the node was shrinking, which was correct though nobody seem to think it was at all significant. I am not sure how much scar tissue was removed and biopsied, but the surgeon insists the FNA included lymphoid tissue and was positive for breast cancer. Excisional biopsy ... No cancer at all. I had a glass of wine tonight with my Xanax. I am sorry. I am confused. I want first things first, second things second, third things third.... In other words, if I have a local or regional recurrence of the dcis into idc I want to identify where it is, then move to further testing, imaging and treatment in that order. I don't want to treat a phantom node.

I am not going to write anymore because I am afraid what will come out ....because I am feeling pretty pissed

WinningSoFar

I had enlarged intramammary lymph nodes show up on a pet scan. Then, they were biopsied with '100% assurance that an enlarged one was hit'. Nothing. Six months later, pet scan shows more enlargement. I had chemo, then the enlarged nodes all disappeared. Yup, every indication is that they were cancerous and the biopsy missed. It can happen.

Stephmoen

I have been following your story and all I have to say is wtf!! So the aspirate said cancer then the biopsy said none??? Makes no sense and is kind of scary to think they could have screwed up

zayb

I certainly haven't ruled out that I have a recurrence. I had a rash and a dental infection right before I felt my enlarged node. By the time I had my FNA aspiration biopsy the nodule had decreased 4 mm in width. The radiologist said the change in size was meaningless. When I went into get my FNA results, I asked the rad onc (the first person who felt the area and who ordered the original ultrasound) to feel the area again. She agreed it had gotten much smaller. When I had my excisional biopsy, the surgeon opened up my axilla and looked around at everything. He found an enlarged node in the exact spot as the ultrasound indicated, but at this time (about 3 weeks after the initial ultrasound) it measured only 1 x 1.5 centimeters and was soft and squishy. The initial ultrasound measured about 2x3 but I did have scar tissue in the area that I think made it look bigger. A total of 4 nodes were removed from the area where I had been able to feel something. I had a physical exam by the surgeon the day before surgery, and he could not feel anything. I am a little concerned about the scar tissue and would like more clarification about how much of this was biopsied. I am definitely going to pursue this, but four nodes were *completely removed* along with all the surrounding tissue (the entire fat pad at level 1) in the exact area of the FNA and there was absolutely no cancer at all. My assumption was that an excisional biopsy that removed ALOT more tissue than an FNA biopsy should have more accurate results. I was all prepared to hear the extent of my nodal involvement, and now I am just like Huh? WTF? The FNA showed low grade. Could anything related to infection bacterial or fungal react with the staining stuff they use?

Congratulations on being NED, WinningSoFar. I had tnbc (but idc not ibc) in 2009.

ElaineTherese

Ugh, zayb, what a mess! I wish radiologists inserted surgical markers within the lymph nodes deemed suspicious. Pre-chemo, I had one node declared cancerous, thanks to a fine needle biopsy. Post-chemo, all nodes appeared clear on PET scan and MRI. So, what did the surgeon do? He took out all 20 of the Levels 1 and 2 lymph nodes. They were all clear of cancer. I've been lucky so far -- no lymphedema. If the person who performed your biopsy had only left a surgical marker in your suspicious node, you wouldn't be where you are. Best wishes to you!

zayb

ElaineTherese, That makes a lot of sense. I am not sure why they didn't put in the titanium clip (all the more reason for me to go for my second opinion elsewhere!). But on ultrasound I had a single "isolated" nodule, so I guess it wasn't really a question of one suspicious area or another. I had one suspicious area, and I am assuming that since the surgeon did find an enlarged lymph node in same area as the ultrasound suspicious area that he actually removed the suspicious node that had been biopsied. I can see where they made the incision and could also see their pen markings. The incision seems to have followed the needle's trajectory. It wasn't like this node was difficult to find on ultrasound. It was in the axilla (according to the person who did the FNA), right in the corner where the breast leads into the armpit. As far as I can tell this isn't an area where it is difficult to find the lymph nodes. And really if the lymph node was still 3 x 2 would it have been that easy to miss given that it was right in that axilla area?

I am stepping back a moment. In ways I appreciate how quickly things have been moving, but I don't think I have to do everything in the space of a week...I had the excisional biopsy within 24 hours of getting the results of the FNA. I know these things can' t be put off, but I think I should be able to take a few days to think about what my options are (and just to not feel rushed or pushed). And, really, I need to understand the discrepancy between the FNA and the excisional biopsy. To have medical folks say that I have a cancerous node but it doesn't matter whether we identify exactly which one it is is not acceptable to me. The enlarged node was easy to see on ultrasound. Really, shouldn't something have shown up when the entire area was excised? It is not acceptable to me to treat this as insignificant (finding no cancer). Since I had only been diagnosed with dcis on this side, I am concerned about a local recurrence in the scar tissue. I am not sure how much scar tissue they removed though. This is something I want to ask about.

Italychick

Zayb, is it possible they removed any cancerous cells during the FNA and nothing was left? I have seen women who ended up with all cancer removed during a biopsy. Your situation seems so bizarre, I agree with you totally.

zayb

Well, I am taking a Cancer Free Day tomorrow. I am going to the library, maybe for a hike, perhaps spend some time sitting quietly in a church, getting a coffee, etc. What it comes down to is that the results of FNA biopsy and the excisional biopsy were completely different and contradictory. It wasn't as if the FNA was inconclusive, so I had an excisional. I have heard nothing persuasive to convince me that the FNA should be considered more accurate than an excisional biopsy. Usually it is the other way, surgical biopsies are usually much more accurate. Something went wrong somewhere because contradictory results really don't make any sense in this scenario. But, before I undergo treatment for metastasis to a lymph node, someone is going to have to actually be able to say to me this lymph node x has cancer and needs treatment. Saying that I have some lymph node somewhere, but it is not important to know exactly which one, that has cancer and so we will treat you even if we don't know which one is not really acceptable to me. For goodness sake, like I said before it was clear as day on ultrasound which they used as they were doing the FNA (it was an ultrasound guided FNA). The surgeon did remove an enlarged node from that exact area as the biopsied area. What? Did it suddenly turn into a different node? There was only a single suspicious area on the ultrasound anyway.

vlnrph

When you read this on the 13th, after your day off, consider where to get your second opinion. An academic medical center would be a good choice. Your tissue sample/slides should be sent for assessment by a lab which has lots of experience in cancer diagnosis. Did you get a copy of the pathology report?

chef127

zayb,

I had a node biopsied pre surgery that turned out to be cancerous. I went to a different surgeon for the actual breast surgery, 8 nodes removed, all free of ca. How could that be?? Well I went with the surgical path report and put the bx'ed node, which had a clip in it, out of my mind. Big mistake. Good for you for ??ing this now. I wondered what happened to that node and 8 months later went back to the surgeon who put the clip in my cancerous node and asked her for an US to see if it was still there brewing the cancer. Well, there it was.

I was having my reduction done on my good breast with the PS who she worked with and had the node removed at the same time. I feel really foolish thinking it was never really cancer in my node. The path report came back worse than the bx report. I still have not gotten an answer why that node never picked up the blue dye during surgery. Maybe the clip got in the way?????? I wish I had ??'ed this from the start.

I hope you get a satisfactory answer about your phantom node. It still haunts me.

xoxMaureen

lekker

I hope you're enjoying your Cancer Free Day - you've certainly earned it! I was going to say what Italychick said about possibly the FNA got the cancerous cells so none were left to find after surgery. Also, it is possible to miss cancer cells on surgical pathology - especially when there are just isolated cells (vs a full on tumor). While current imaging is not perfect, I would consider asking about what options you might have - maybe a PET/CT or MRI to see if any further disease is visible. Good luck and I hope you get good news soon

zayb

I shouldn't be posting here today. I appreciate everyone's responses. I haven't been enjoying my cancer free day, but I did spend time at the library and will be going for a long walk tonight.

I understand everyone's reposnses, but I feel burdened and depressed by the lack of confidence I have in my medical providers. I want more clarity and more coordinated care if I need it. I am going to switch and go the place I had my previous pathologies reviewed, a large cancer center affiliated with a major university with a dedicated breast center. I understand that surgical biopsies can miss things, but how in the world does a FNA (that took only two samples) have enough tissue to type and grade the cancer, but an excisional biopsy that takes way way more tissue from the exact same area show absolutely no cancer. There is some disconnect here. I have been treated for cancer before. I am absolutely sure that the surgeon could see the previous tumor when he excised it. Why couldn't he see anything besides the enlarged node this time? I went under general anthestesia for this lymph node dissection, and rightfully expected to get greater clarification about what was going on and to have any cancer removed!!!. Really, removing tissue and looking at cells is about as clear as things get, right? But I am really really disturbed that said surgeon insists there is cancer there but says there is no need to remove it surgically or to even identify where it is.

By the way, I haven't had a breast there for over 5 years. When it was removed pathology showed microscopic dcis in 3 quadrants. But, I had good margins. I had the pathology reviewed at "an academic medical center" that said no further treatment was warranted 1) because I had good margins and 2) because I had no breasts at this time. I was told the risk of taking an anti-hormonal was greater than my risk of recurrence. My previous cancer was hormone negative so I was not taking any targeted therapy for it.

I know cancer is unpredictable, but my understanding is that if dcis recurs it typically goes local, local/regional or local/regional/distant. Maybe there are some rare occasions when it goes regional first, but even this is not common. So, I am concerned I might have a plain old local recurrence in the scar tissue (which should be removed), but they are all fixated on my lymph nodes etc. that they are unwilling to consider this possibility. I had ONE enlarged lymph node, it was removed, it showed no cancer. Surely, there is a message here someone needs to hear. The surgeon says no more surgery is necessary, but hey maybe he is wrong.

If I had only had an excisional biopsy in fewer than three weeks from when I felt a palpable node (which would have been a reasonable choice) and an enlarged node was removed in the exact spot that showed on ultrasound, along with 3 other nodes, and no cancer showed up in anything, not in any of the tissue that was removed, do you suspect that this would have been presented to me as good news? Instead, I got told we have bad news for you, you have cancer even though there was not a single cancer cell found in any of the tissue we just removed nor did any of it look abnormal when we cut you open. I need something more definite than this for a diagnosis. Sometimes, I think there may be more of a worse case scenario here for someone, but I am not even going to write it down.

zayb

Taking vlnrph's wise advice I now have a path review in the works and an appointment for early September at a dedicated breast cancer treatment center affiliated with a major university.

The nurse navigator there spent almost an hour with me on the phone. She was very gracious and agreed the whole thing needed more investigation. She started explaining how needle biopsies collect only a small amount of tissue and so it is difficult to get a full path report.... And I said, that is exactly the point I am making. I was told that the tiny needle was able to get an adequate sample for hormone typing, her 2 typing, determine that it originated in the breast, that it was low grade, etc etc....

But when they went in and surgically and removed the single enlarged lymph node ...that had been shrinking steadily for a few weeks, plus additional lymph nodes and additional tissue, they weren't able to find a speck of cancer.

I told her my husband found one study in which there was a very small incidence of false positives in FNAs of the breast .... How did they know they were false positives? When they did the surgery, they didn't find cancer. Duh! They then reviewed the slides as part of the study to determine the error. Of course, I also told her there are flashes when I think the unthinkable, given that there is no question that the samples were taken from the exact same location on my body and given such radically different results, I wonder sometimes whether or not all the tissue they were looking at was mine... I am so dumbfounded that they are satisfied with no explanation whatsoever. But, I have shaken the dust from my feet as far as that experience goes and am hoping I get some clear answers one way or the other and can move on from there.

ShetlandPony

This may be a nonsensical thought, but could they test DNA in both the biopsy and surgery samples to see if it matches your DNA?

Tomboy

Jesus H!! WTF??? I am outraged on your behalf, zayb, and also completely understand you not trusting them anymore. Everyday, I can feel a hard lump, that mine has told me over the last year and a half, was a "reactive' node. Well, it sure feels hard and bumpy and unmoving to me. It just doesn't feel "right". They did a us guided biopsy, and found nothing but glandular tissue, Well, a breast IS glandular tissue. I don't think they even sampled it, I really do believe they missed, and the clips that are there, are in the breast proper, and where I originally felt this bump, six months after treatment ended, well, I have even been told that it is my ribcage. It is not. Don't they think I can tell where my rib is, with my own damn hands?! It is ON my ribcage, straight down on my side six inches away from my armpit. The place I went, I now consider a cancer mill.

For you? For them to want to treat a cancer they cannot find? NO NO NO. So, how do they even know WHAT KIND to treat for???

zayb

Tomboy, they were able to type the cancer from the FNA. This was something the nurse navigator asked me today, the question about other cancers. So my sense is that whatever FNA was biopsied was a significant sample since they were able to glean so much info from it. Odd that such a great sample can be found by a little needle, but absolutely no abnormality is seen when the area is opened surgically. Sometimes I think, maybe the surgeon removed an entirely different area of my body, and that is why the results are so different but this just doesn't make sense. I saw all the surgery marks and incision. I saw the needle biopsy location. I had ultrasound imaging done twice shortly before the surgery. There was a single suspicious area, right at the corner of where my front chest starts turning the corner to my armpit. When the surgeon performed the biopsy, he found an enlarged node in the exact spot that corresponded to the ultrasound image. There was scar tissue and he said the enlarged node was "kissing" another node giving the impression of elongation on ultrasound imaging that wasn't really there when looked at directly. He also looked around, and said he saw nothing abnormal, nothing that looked cancerous.

ShetlandPony, when I said to the nurse navigator that sometimes I wonder whether all the tissue was really mine, I expected her to gasp and say "Impossible," but she didn't.

vlnrph

Happy to hear zayb connected with that nurse navigator who took time to hear her whole story. We really do have to be our own advocates and insist that our concerns be addressed. Now to wait until early September...

I hope Tomboy is planning to look for a second opinion also!

zayb

I feel so much more normal now. After a day of worry that I had overreacted, I am now comfortable with my decision to cut ties with my previous providers.

There was no way to put a positive spin on the experience with the surgeon, even though he has performed all my breast surgeries. My experience on the phone with him earlier this week was just weird. In any case, there was a failure at the level of the mastectomy over 5 years ago and he didn't remove all the breast tissue. Or, in the more recent surgery, if there is any cancer there, he was incapable of finding in an hour long surgery what someone else was able to find in a 30 second needle jab. Really who would want a surgeon who was unable to find something that was so easy for someone else to detect in 30 seconds with a little tiny needle. That he insisted on the phone that I had metastatic cancer in a lymph node, but that it just didn't matter which one is so absurd I can't believe someone who is actually practicing medicine said it. Why was it so urgent to rush me into surgery with under a day's notice (which is what they did), then all of a sudden it is not important to even know where the cancer is (if there even is any). How in the world could they monitor the effectiveness of treatment without a clearer diagnosis? And, I still think it is highly unusual to get such a great sample from a fine needle jab that they can tell everything about the cancer, yet there is no cancer in a surgical excision of the same area...which just brings me back around to the point I made a second ago...if he couldn't find something that should be so obvious to a teeny tiny needle in a 30 second jab that required all of a tiny band aid, then why would I want him as a surgeon anyway.

The experience with the medical oncologist was also subpar. I realize she was new to the practice and perhaps was put on the spot by being asked to see me in such short notice, but it wasn't me who requested to see someone immediately. She heard by word of mouth that I had been diagnosed with triple negative breast cancer, but didn't know all the details. When she met with me she told me I had a recurrence of triple negative breast cancer without having even read or looked at a pathology report. It was only after I had insisted repeatedly that this was inaccurate that she actually called the pathologist. I mentioned things like, it was over 6 years ago that I was treated for tnbc on the *opposite side*, is it really likely that tnbc would recur in a single lymph node on the opposite side over 6 years after treatment. Perhaps remotely possible of course, but not the likely scenario. Why not collect all the facts first, put them together and move on to making a judgment from there? The difference from a prognostic standpoint of telling someone they have recurrent tnbc compared to telling them they have what is essentially a *new* low grade highly hormone positive cancer that appears to be in one node only is so great that to communicate the diagnosis without actually reading any report is really irresponsible. She also said I had a macro-metastasis in the node. While I know this is what it looked like, to tell someone that they have a macro-metastasis in a lymph before doing a lymph node dissection is also irresponsible. I had my enlarged node surgically removed. It came back negative for cancer. No one, even the surgeon, is disputing this.

I had dcis on the side in question. I had a mastectomy with good surgical margins over 5 years ago. I know it is possible to have a recurrence of dcis, but it is fairly rare, and even more rare to recur directly to a lymph node in the absence of any local recurrence. Right now, I am focusing on the facts that can be tied to me most directly, e.g., when the surgeon performed the excision nothing looked abnormal, my lymph nodes looked normal, the surgical biopsy came back clear for cancer. There is no question that when he had surgically excised the lymph nodes that looked normal, that these normal looking lymph nodes were connected to me, to my body in real time. I never even had a hard node, I had a barely palpable shrinking node and now it has been removed and determined to have been cancer free. The FNA is an anomaly (even the fact they were able to collect so much tissue that they could tell everything about the cancer, hormone status and all the rest, is probably an anomaly) and has the most tenuous connection to me the real concrete person. Sometimes I feel like someone put moon dust on a slide somewhere, and now are insisting that because they see moon dust on the slide this means I have been diagnosed with moon dust. The fact that when they actually look at me and even surgically excise the area and see nothing resembling moon dust becomes for them confirmation that I have moon dust is so beyond the pale I can't really even comprehend it. I know this sounds weird, but I think they were really anxious to diagnosis with cancer...

I am concerned that I have cancer, though I think a local recurrence is more likely given the previous dcis diagnosis. I am not convinced I have cancer. But, I don't need to go to doctors who fear monger me or who hand out diagnoses without even reading reports or who are unwilling to address real discrepancies in their findings. Since I just had surgery, any treatment I would have had in the event of a real diagnosis wouldn't have started until September anyway. So waiting until early September to see another oncologist and to have all the pathology reviewed at a major academically affiliated dedicated breast cancer center is reasonable. I am still worried, but I feel relieved at moving forward in a way that feels rational and sane.

I agree with vlnrph about getting a second opinion Tomboy. I think it is just a matter of due diligence. The whole process is so scary and in ways we are really at the mercy of doctors. There are many very good and dedicated doctors but it is important to advocate for oneself. I know when I was diagnosed with tnbc I saw three oncologists, talked to another on the phone, had the pathology reviewed, got second opinions, etc. Doctors may not be able to address ever issue or question, but they should certainly be willing to hear what people have to say.

zayb

This is a very interesting article and though important to read critically, it has some cautionary advice I think on the power of perception. It also discusses toward the end a clinical trial for wmoen with metastatic breast cancer that either did or should be taking place this year. Food for thought.

http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html?_r=0

Tomboy

Thanks Zayb, I will come back and enjoy reading that article tonight. And Vlnrph too, yes, I really do want to start up again somewhere else for my follow up. But there are awful lies and mistakes in my medical file from that cunt place, that I want to fix them before I go to a new place. I was in the midst of writing my scathing indictment of them, with all the mistakes and things that were said to me, cause I want it very clear why I am leaving them. I have to do that, and every time i look at my pile of writing, and the clinic notes, It is daunting, and makes me tired just to think of it. So I have been avoiding it. I know, I know, before the end of the year.

Unbelievable. i do hope you don't have any of there imaginary moon dust on you, Z !!!