BC: a Terrifying, Confusing World to This Newbie

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joalta
joalta Member Posts: 4
edited June 2014 in Triple-Negative Breast Cancer

I just talked to my surgeon today and am feeling very, very low. This whole "journey" started Nov 1st with a lump found upon bse. That was 7 mos after a normal cbe and normal mammo. I was seeing my internist the next day so asked him and he said he was 99% sure it was a cyst but have a sonnogram to make sure. Waited weeks for that. With no sign of a cyst, I immediately had a diagnostic mammo which showed micro-calcifications. Surgical biopsy just before Thanksgiving found DCIS. Chose a mastectomy so as to avoid radiation. Now the biopsy from my mid-December mastectomy shows I also have invasive ductal carcoma. The surgeon said this was extremely rare. He removed no nodes during mastectomy because they "never" do that with a DCIS diagnosis plus the palpable lump had been entirely removed during the biopsy. I'm still shell-shocked. Beyond anxious. And it's triple-negative. Any words of encouragment out there would be welcome. I feel like "dead woman walking."

 Also, I'm travelling to a major cancer center next week (3 hours away) to see a medical oncologist plus a surgeon about the node dissection. Any thoughts about if I'm in good hands with the local board-certified general surgeon to do the nodes or if I should put my case in the hands of the major cancer center?

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited December 2010

    So sorry joalta - sometimes it seems as if the bad news will never end - but it does.  I think you're exactly right to consult with a major cancer center.    They will likely order copies of your pathology slides to review themselves and get a plan in place for you.  You'll feel a lot better after that.  I started w/a general surgeon for biopsy & then went to a NCI cancer center.  My best to you.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Joalta:

    There is not a one of us that has not been exactly where you are right now.  Probably the most important thing I can offer you is to make sure you are in the hands of doctors that are very familiar with triple negative breast cancer, as what we have is a whole different beast.  One that can be beat, but it takes knowledge to handle it.  Going to a cancer center is a wise move on your part.  As Janet said, it will get more "clear cut" for you and once you begin your treatments, while the fear you now have will remain, it does dissipate some as time goes on. Finding Invasive breast cancer in DCIS is NOT unusual, you will find many gals here with such cases, so don't let that panic you.  We will be with you every step of the way, I promise you.  Keep us posted on each step of the way.

    Wishing you all the best,

    Linda

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  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    Hi joalta..welcome to the triple negative world...There are alot of us here to help you!!!   The key word is that we are HERE to help you...no dead women walking around here..ha ha

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  • joalta
    joalta Member Posts: 4
    edited December 2010

    Thank you. These comments are very helpful. You're the best.

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  • tracie23
    tracie23 Member Posts: 598
    edited December 2010
    Hi joalta, I am TN and I had a double mastectomy in June. I had a large lump in my left breast they did an ultrasound and mammogram and with in 2 weeks I was in surgery , I had IDC and they removed 4 lymphnodes but it did not spread.  I am also BRCA2 positive. I decided to remove both breasts because my mother, Aunt and Grandmothers all had it and a recurrence so I was not going to fool around and wait for it to show up again some day but I have not done reconstruction yet I wanted to wait to get through all the junk first. Since I have TN breast cancer I cannot take hormones (birth control or Hormone replacement therapy) So now I am in Chemopause Foot in mouth due to the chemo but I am doing fine. The chemo they gave me and said TN seem to respond very well to it is 4 AC and 4 Taxotere. They wanted me to do chemo as a preventitive due to the history , size of the tumor and the TN status. Now I know depending on your total diagnosis you may have different. But I know you are going to be fine and you found all of us so we are here for you when ever you need us.
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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Tracie - I had the exact chemo you had.  They like to go as agressive as possible with us triple negs unless the tumor is really tiny, like less then 5 mms.  We only get one shot at killing this crap, Joalta, so hit it as hard as you can.  As I said in my earlier post to you - being in the hands of an onc that is knowledgable with triple neg is so important.

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2011

    LRM216, how did you do on the taxotere and did you have the Nulasta shot?

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  • joalta
    joalta Member Posts: 4
    edited January 2011

    Thanks to all of you for your encouragement and advice. I spent 2 grueling days at a NCI-affiliated comprehensive cancer center last week. I didn't know anyone but potentates and celebs could receive this kind of care. I met with a first-rate medical oncologist one day and a surgical oncologist the next. I also had a bone scan and full-body CT. I felt like everyone there, from the medical specialists to the schedulers were MY advocates. I had already had a mastectomy in December (no nodes removed; the DX had been DCIS after an earlier lumpectomy but one edge wasn't clear so chose mastectomy as the "conservative" option). The local surgeon wanted to do a node resection this week. The oncologist and surgeon I saw said the current priority was chemo, with nodes to "perhaps" be removed after chemo was completed. I'm going back there next week to see the oncologist and have a port inserted the next day. Hopefully, last week's tests won't reveal any additional problems. That worries me. The prospect of 6 months of chemo is overwhelming. But at least I feel like exceptionally qualified people are coordinating my care and that's no longer my responsibility. Throughout, I've hung onto Jane's assurance: "sometimes it seems as if the bad news will never end -- but it does."

    Anyone else skip the "node step"? Specialists told me that current thinking was ambiguous for someone in my particular situation.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Sorry, Tracie, I just read your post.  I hated the taxotere - it kicked my butt and then some, but it was easier on the neuropathy I developed instantly after my first taxol.  She then switched me to the remaining 3 taxoteres.  I was definitely NOT one of those gals that felt it was a walk in the park compared to A/C.  I felt it was more a bellyflop into a cesspool.  Ugh.  I made it through it all, but it was tough.  I had Neulasta shots day after each of my 8 rounds of chemo and those were horrendous for me too.  My bone pain would start about 2 or 3 days after each shot and last almost a week.  Guess you can tell that I am definitely not one that felt my treatment was a "bump in the road". 

    Joalta:  Glad you are in good hands and have a plan being put into action.  I have no info on the node step, as I had a lumpectomy and sentinal node surgery at the same time, then onto chemo.  Keep us posted, please.

    Linda

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited January 2011

    joalta - so glad to hear your update.  Sounds like they were VERY thorough with you.  And, yes, it's so much better when you get experts on board to drive your treatment.  Six months is a blip in time over your whole life.  You can do it! 

    I don't have any insight on the node question - maybe start a new thread to ask about others who might have had the same thing happen?  Chemo sounds logical to me as a first step -- and maybe the CT scans can tell about any node involvement?  I don;t know. Just remember, it's totally possible your nodes are clear to begin with and you can avoid more surgery.

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  • joalta
    joalta Member Posts: 4
    edited February 2011

    It's taken me a long time to get back to you. Just hours before I was scheduled for port placement, I learned that my diagnosis wasn't IDC but DCIS with microinvasion -- one, 0.2 cm and three other foci measuring less than or equal to 0.1 cm. Surgery was cancelled and I was told I needed no further treatment. That was the last outcome I expected at that point. Thank goodness I followed my instincts and sought 2nd opinions at a NCI-affiliated cancer center. The 2nd path report called the referring institution's slides "suboptimal." Doctor-speak for incompetent? The oncologist told me to get a CBE every 6 months and come back in a year. No nodes were removed at the time of the MX. The oncologist mentioned that one node is slightly enlarged "due to the surgery." (FYI, I also had immediate reconstruction.) That's the first time I heard of any palpable node. He didn't recommend a resection. I sure don't want one but now he's got me a bit concerned. Anyone have a similar experience? Trying not to make lemons out of lemonade....

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