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Confused about post surgery pathology

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hippmark
hippmark Member Posts: 92

I received my post lumpectomy pathology report yesterday. It is worse than I hoped for and I am confused about what to do. Should I seek a second Onc. opinion? The biopsy showed a 1.8 CM Grade 2, Stage 1 tumor. From what I can read, the IDC is 2.2 mm with embedded DCIS " of equal value." I assume meaning it is 50/50? Both MRI's and the surgeon felt confident it had not spread to my lymph nodes. The results came back as a 2.2 CM DCIS Comedo Grade 3 and IDC Grade 2 tumor with one positive lymph node. However, the surgeon only took out 1 sentinal lymph node. When they placed the dye in the tumor before surgery, it would not migrate to lymph nodes. I was told they would use a probe instead. After surgery, the surgeon said that the one node he took was soft and did not look at all cancerous. Guess it was. I have not spoken with my surgeon yet. Why would he not take out more nodes? Because the others also did not "look" cancerous? How would he know unless he took more?

I am confused and disheartened. So how many more could there be? As well, I happened to see my Oncologist yesterday too. I had to print him a copy because he is at a different hospital. He was in a rush as he was the only Oncologist there that day. He ordered the Oncotype test. He is very caring, but seems to put a "too much" (at least for me) positive spin on things. He scheduled me for chemo starting in 3 weeks with T/C, 4 rounds every 3 weeks. Does this seem the appropriate chemo for a node (or nodes postive) path? As I left he said "no problem, we'll get this wiped out and you'll be alive 20-30 years from now." He doesn't know that! I don't want to be overtreated or undertreated, that's for certain. I am planning radiation and AI following chemo.

No one may have the answers to this, but like many others, I have a sick feeling in my stomach not knowing what to think now.



Comments

  • beesie.is.out-of-office
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    Hippmark,

    I'm sorry that your pathology came back worse than expected. That's never a good surprise.

    About the nodes... you will need the advice of your MO on that, but I can tell you that sentinel node biopsies sometimes only remove one node - it all depends on how many nodes 'light up' with the dye and/or isotopes. So having only one node removed is not unusual. I'd guess that since your surgeon didn't expect that you would be node positive, he was trying to minimize the risk of lymphedema and therefore removed only the one node; good intentions but in hindsight perhaps not the best decision. One important piece of information for you is that studies have found that after a positive SNB, radiation to the nodes is as good an option as having a full axillary dissection. That said, in your case since your SNB was unsuccessful (did the surgeon remove the node that was the sentinel or another node that might have been further up the line? the way nodes are grouped together, to my understanding it is impossible to know without using the dye/isotopes), your MO might suggest an axillary dissection. That's something to ask about.

    The one thing I can tell is you is to not worry about the DCIS. Other than surgical removal with clear margins, it's irrelevant to your diagnosis. Most (about 85% I think) diagnoses of IDC include DCIS and because DCIS is a less serious condition, anything done to address the IDC will be more than sufficient to treat the DCIS. Even though your DCIS is grade 3, it is still non-invasive, vs. the IDC that is an invasive cancer. So while it's is unsettling to find out that you had all this DCIS, it doesn't affect your staging, your treatment plan or your prognosis.

    With regard to chemo, while your MO has scheduled it to start in 3 weeks, is this pending the results of the Oncotype test? Depending on your Oncotype score, chemo may or may not be indicated. May I ask how old you are and if you are pre- or post-menopausal? The newly released RXPonder research study, which looked at the benefit of chemo for those who are node positive and had Oncotype scores ranging from 0 to 25, found a difference in the benefit of chemo for those who are post-menopausal and/or over 50 versus those who are younger and pre-menopausal.


  • hippmark
    hippmark Member Posts: 92
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    Thank you Beesie. I had hoped you would see this and reply. I admire your knowledge. Right now, I am assuming that the surgeon did not take more nodes to spare me the possibility of complications. OR, my surgery was last in the day on 12/23 and everyone was trying to get out of there for the holiday. I was the last surgery. Plus, thre was no migration of the dye to the lymph nodes so he told me he would use a probe. I don't know how accurate that is! As you said, good intentions but in hindsight...I have still yet to speak with him directly. My MO said he would leave it to the surgeon to decide on more surgery. I don't know what is normal in these circumstances, so I don't know where that leaves me at this point. I am encouraged to see that studies have found that rads are as good as more anxillary node removal. I have an appointment with the radiologist next week.

    I have read that they base treatment on the most aggressive portion of the tumor, thus being the IDC Grade 2. I think I was a little surprised to read that 50% was DCIS in a tumor 2.2 cm. The margins were clear.

    Once again, I am assuming he is waiting 3 weeks to start chemo to see the Oncotype score. I have been trying to logically make an educated guess as to what the socre will be because my Ki67 was a whopping 50% and I am PR negative, plus grade 2. I am 63 years old and post menopausal. Initially, the Onco "guesstimated" it would come back between 20-32. I always felt it would be on the higher side. Say over 30 and now with lymph positive...you know. He said "based on experience." Right. I always "knew" in my gut I would need chemo from the KI67 score and other prognosticators. For me, my biggest fear is having to go with adrimycin so I told him I didn't want to be on that if possible. I live alone and have no local support. Plus, I plan on using Dignicap and you really can't keep your hair on an adrimycin. I was initially hoping for weekly Taxol for 12 weeks, but he went with the TC every 3 weeks as I read that is the most "common." Will that change with Oncotype? I have another agonizing time to wait.

    OK, sorry to unload more, but my real fear is the adrimycin and now, the possbility of more surgery.




  • alicebastable
    alicebastable Member Posts: 1,945
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    Mine was similar, not the same. Mine was all invasive, and ER/PR +, but I too had just one node removed - and that node had surprise micromets. My MO was all set to have me start chemo, with a port placement at the same time as a re-excision to tidy up a margin. The day before that surgery, my Oncotype came back 17, so no chemo. I did have a longer course of radiation than initially planned, to include the axillary area. Just posting to let you know those surprises can go both ways.

  • beesie.is.out-of-office
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    Hippmark, I would tend to agree that with a Ki-67 of 50% and being PR-, you are likely to have a high intermediate to high Oncotype score. Ki-67 and PR are two significant factors in the Oncotype calculation. Nodal status is not, however, so that will not affect the Oncotype score. The positive node does move you onto the "Oncotype Node Positive" scale, however, which I believe may have slightly higher recurrences risks associated with each Oncotype score.

    If your score falls in the high intermediate range (up to a 25), the RXPonder research results will be very significant. If your Oncotype score is higher, then chemo will be the recommendation.

    Fingers crossed that your score is lower than you expect, and worst case, you proceed with TC as currently planned.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Just a thought.... What % of your cells tested positive for estrogen receptors? If your ER is low, maybe your oncologist is treating your cancer like triple negative, which always involves chemo.

    Sorry that your pathology report was a bummer. ((Hugs)) Best wishes, moving forward.

  • hippmark
    hippmark Member Posts: 92
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    Beesie, I agree with you. I know it will be high and I have accepted that I will need chemo. It's the type of chemo that I am anxious about. I don't know what qualifies someone to need to have an adrimycin, but I hope not to be one of them. I am suspecting my number will be around 33 to 34. The onc. mentioned on my first appointment that he would need to see it come back in the 40's to hit me with adrimycin. It could still be that. I pray not!

    ElaineThere…Thank you for your comment and wishes! As mentioned above, it is not that I need chemo, it is the kind. The sledge hammer red devil kind or somewhere in the middle? I am 99% ER +, PR neg. and Her2 Neg.

    AliceBastab…Your comments are always appreciated. Like Beesie said, with a high KI score (50) and PR negative, and now lymph node involvement all points to a more aggressive tumor, which I was always expecting once I saw the Biopsy report. Like you, I also now expect a longer dose of radiation and into the lymph nodes.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Hippmark,

    As you can see from my signature, I did Adriamycin + Cytoxan for four cycles. It was doable, but it's not for everyone, especially if they have pre-existing heart conditions. For my kind of cancer (HER+), there are two chemo regimens for tumors over 2 cm -- AC (X 4) + Taxol (X 12) + Herceptin + Perjeta OR Taxotere + Carboplatin + Herceptin + Perjeta (X 6). Ignore the Herceptin and Perjeta (as they are for HER2+ cancer), and you can see that both AC and TC are considered heavy duty chemos that are used relatively interchangeably for an aggressive cancer. You'll have options.

  • sun-shine
    sun-shine Member Posts: 30
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    Hi Hippmark,

    I had a similar tumor size like yours, 2.2 cm. My tumor was ER+, PR+ and Her2 - . My Oncotype is 28. I am 59 yrs. Currently I am doing the second round of 4 T/C.

    Right after the surgery back to October 29th, I asked my surgeon how many lymph nodes that he took out. He said " one cluster, probably two lymph nodes in it". It turned out that only one lymph node was removed. I would guess the doctor just took out the cluster or lymph nodes that was/were lighted with dye or detected with the radiation detector during the surgery.

    If you want, you may go to "Topic: Anyone on just Taxotere and Cytoxan?" on this website from where you could get more information shared with other people.

  • gb2115
    gb2115 Member Posts: 553
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    I had surprise pathology not once, but twice. Imaging never picks up my positive nodes, nor do they look funny, yet they are full of cancer. The first time they did nodal radiation. The second time we added on chemo (AC/T) with moderate Oncotype because it was a recurrence, and I'm getting a node dissection next week because I was already given my safe maximum radiation dose.

  • hippmark
    hippmark Member Posts: 92
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    ElaineThere, Thank you for reminding me that TC already IS a strong chemo. I had looked at/hoped for a weekly dose of Taxol with Cytaxin for 12 weeks lower dose dense, but weekly so you get the same amount in total, just every week. To make it easier on me. But he was in too much of a rush to talk about that. I don't even know if that is considered a hard chemo, but I assume so.

  • nns121317
    nns121317 Member Posts: 113
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    I had similar concerns after a similar pathology surprise - my post is here:

    https://community.breastcancer.org/forum/96/topics...

    My Oncotype score was 25. My MO, who describes my cancer as "persistent" if not objectively aggressive, recommended AC+T but also offered TC (4x, biweekly). Knowing my family history, I went with AC+T.

    I'm still bothered that I don't know if I have more positive nodes lurking around, but have resigned myself to the notion that radiation will get them, even if I'll never have proof of this. Can't see myself signing up for the potential SEs of an ALND right now.

  • hippmark
    hippmark Member Posts: 92
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    I think my MO did not offer AC+T or similar because I told him I did not want to be on Adriamycin. We have heart problems in my family, not to mention just how tough that chemo is and I live alone. Is T+C strong. Yes. Is it strong enough for me? I don't know. But I an positive my Oncotype Score will come back high. So I guess it will be what it is and I hope I am making thr right choice. No one knows.

    For others that have responded to this thread, my surgeon did call today. And while I don't understand everything he said, I feel I have enough information now. He explained that some of the dye did migrate to some nodes (although I was told pre-surgery it did not). He also used a probe which I understand now shows radioactivity in nodes. He did say that the one node he took showed radioactivity and that is why he took that one. The others tested with the probe did not (I guess) show radioactivity so that is why he did not take them. He said he was also surprised to find the node was cancerous. But, he feels like it was the only one.

    He confirmed was Beesie said, that they would treat it with radiation to the lymph nodes, so no more surgery needed. I was just completely unprepared for even one to be positive and no one thought it would be.

    I want to thank everyone so much for their guidance. I'm not sure what I would do without this board!