Just diagnosed and received 2nd opinion

bc101
bc101 Member Posts: 1,108

Hope I"m at the right forum ... this is the first time I"ve ever posted, so bear with me! After my diagnosis 3 weeks ago of stage II ILC, I went to two surgeons for a consult--one to a local dr. with the clinic that did all the tests including pathology and then had a 2nd opinion at a university cancer center. My tumor is irregularly shaped measuring about 3 cm with a tail-like point being 5 cm long. The local surgeon recommended mascetomoy and SLNB. The university Dr. who is a surgical oncologist,  recommends doing an Oncotype DX test right away. The plan is for neoadjuvant therapy with either chemo or hormonal therapy depending on the results of the oncotype. This plan is to shrink the tumor for possible BCT if I choose to do so, but also to treat cancer cells that may be floating around in the rest of the body. Then in about a month do either a BCT or mascetomy with SLNB. It sounded good at first, but now after thinking about it, I am concerned that we are not doing surgery right away. I am tempted to do a mascetomy just because that is my gut feeling. Last night I was up late reading articles on the Internet for ILC and preoperative treatment. I found several that said preoperative chemotherapy does not improve disease outcome compared with postoperative. The outcomes for preoperative endocrine therapy are better, however, I don't like that I have to wait 2 or 3 weeks for the oncotype results and then postpone surgery for another month, even though they will be treating the tumor preopertively with chemo or endo. I also worry about the reasons why the Dr. at the U is recommending this. The local surgeon, who says he knows him, stated during our consult that Dr. T "doesn't like mascetomies." I don't trust this local surgeon to do my surgery, but what he said has stuck in my mind. I was ready to do battle with this cancer, but now I'm back to scared and feeling panicked. I'll try calling the Dr's nurse today to talk about all this, but wanted to get some feedback from those who've been there. Thank you!

Comments

  • JSwan
    JSwan Member Posts: 81
    edited July 2013

    Blondie -- I did neoadjuvant hormone therapy prior to my surgery and was able to have a lumpectomy as a result.  It was the right call for me and I have no regrets.  Feel free to PM me if you want.

  • gardengumby
    gardengumby Member Posts: 7,305
    edited July 2013

    You don't say what kind of cancer (ER/PR positive or not) you have, nor grade, but stage II is scary, isn't it? That was where I was when diagnosed as well.  My oncologist wanted to do pre-operative hormone treatment as part of a trial - I said no, not because it would delay my surgery (my surgery was delayed as I wanted a specific doctor, so had the surgery as soon as she was available) - but I didn't want to be part of the trial because it would have meant that I would have weekly PET scans, and I didn't want all that radiation in my body.

    I was diagnosed in October (2010) and had my surgery (mastectomy) in December of the same year.  The OncotypeDX testing was performed on tissue removed during the mastectomy.  Though I wanted a lumpectomy at the time of my diagnosis, I was not elligible for one (too much of my breast was compromised with DCIS in addition to multiple IDC).  Since then, I am thankful that I had to have a mastectomy, as with a lumpectomy radiation is required.  I was able to avoid both radiation and chemotherapy even though I had positive nodes.  From what I've seen of friends who experienced radiation, I (personally) am most thankful that I didn't have to undergo it.  I had reconstruction, and because I was able to avoid radiation, that went very smoothly as well.

    You may want to investigate some of the SE's of radiation so that  you have more information on which to base your decision.  (Did you have any DCIS along with the ILC?)

  • wallycat
    wallycat Member Posts: 3,227
    edited July 2013

    You are smart to go to several doctors and have decisions to bounce off of experts.  We can share what we did or think, but it is ultimately your decision.

    If I am reading your post correctly, they are making a diagnosis from imaging and not a lumpectomy, correct?

    Many of us have discovered our tumors were smaller or larger than imaging predicted.  Even my surgeon, whom I adore and trust *swore* to me that MRI is 99.9% accurate, yet my tumor ended up being twice the size (from .7mm to 1.8cm).

    Also, do you know if you want lumpectomy and rads or mastectomy?  If you plan to do the mastectomy, then pre-op chemo, IMHO, doesn't make sense since they will take all of the breast anyway....and until you have the SNB, you have no idea if the cancer (in theory) has spread.

    I would do oncotypedx for peace of mind in my decision making but regarding pre or post op, that would depend on your lumpectomy/mastectomy decision, IMHO.

    Best to you and so sorry you are joining us.

  • Gitane
    Gitane Member Posts: 1,885
    edited July 2013

    Hi Blondie,  I'll share what I did.  It turns out I'm happy with my decisions.  I had the SLNB first, then chemo (neoadjuvant), then bilateral mastectomy, then hormonal therapy.  Having the SLNB first let me know what state the nodes were in before treatment, having the chemo before surgery let me know if it worked ( it did, very well ), the mastectomy was necessary due to DCIS on one side and my choice on the other. The downside is I will never know the exact size of my tumor(s).  Pre-op MRI was probably pretty close though.

  • kar123
    kar123 Member Posts: 273
    edited July 2013

    Hi Blondie,

    I had the neoadjuvant chemo first and it shrunk my tumor significantly (clear margins at surgery), then mastectomy, radiation, and hormonal therapy.  I had tissue expanders placed at the time of mastectomy, filled until radiation.  Finished fills after radiation and then implants several months later.  Neoadjuvant chemo was a good decision in my case and radiation side effects were also minimal in the reconstruction aspect.  Good luck, it is a tough decision.

    Kelli

  • mary625
    mary625 Member Posts: 1,056
    edited July 2013

    The size of your tumor and perhaps your age if you are under 50 are probably what are behind the neoadjuvant chemo advice. I had neoadjuvant, but I also knew I had a positive node without a sentinel node biopsy. It was palable and biopsied via fine needle aspiration. With that situation, I did not qualify for Oncotype and straight to chemo I went. My second opinion said that it is not proven, only theoretical, that neoadjuvant chemo is advantageous over adjuvant, but that it does allow them to monitor the progress of chemo on the tumor. Otherwise, you are getting chemo and have no idea if it is effective on the tumor as it is gone from surgery. I liked that I could feel the softening and shrinking of the tumor. The doctors could not even find the lymph node after chemo. (However, as you'll see below, they were bad anyway even if not enlarged.) I was told that there was no way that the cancer could spread during chemo. I don't know if that is true or not, but that is what I was told. Good luck with your decision.

  • bc101
    bc101 Member Posts: 1,108
    edited April 2014

    Wallycat - no, I haven't had a lumpectomy --that's not an option for me as my tumor is too big. That's why my surgeon suggested we start by shrinking the tumor. Today I had the nurse email the Dr's notes and I read them over again. It stated that endocrine therapy is recommended -- not chemo. He wrote "the decision regarding chemo would not be made at this time." Anyway, I think I've pretty much decided I want a mascetomy. The main reason for my decision is that I absolutely cannot stand the thought of this tumor being inside of me any longer. Although, I must admit it is encouraging hearing from other women out there who have done preoperative treatments and are quite happy with their decision. 

    I'm told it's better to do reconstruction at the same time as the M -- apparently you get better results. I realize this is major surgery and that the trend is towards BCS, but lots of women still have mascetomies with success, right? If only I could go to Mayo for a third opinion!  How much time is too long to wait between diagnosis and treatment? My tumor is slow-growing, but I still feel I must act on this quickly. The hardest part about all of this is that there are so many choices. And there is so much information out there, but only you can make that choice. They say talk to your doctor, make a list of pros and cons, do research, but in the end you go with your gut. Thanks everyone!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    I did it all because I had positive nodes (as you can see).  For me, knowing my strength and physical ability, I felt I could handle it all. Not everyone can or wants to take a risk for a possibly small % in survival, but I did--and recovered with no lasting side effects.

  • wallycat
    wallycat Member Posts: 3,227
    edited July 2013

    IMHO, the reason the doctor is telling you no chemo at this time is because until they get in there, they really can only *suppose* what is there.  The biopsy must have indicated hormone positive since he is talking about antihormonals.

    I did not opt for reconstruction, but they did want a lumpectomy first.  The imaging and biopsy were both not the total picture of what happened.

    If I were doing recon, I would probably ask if it is possible all at the same time.  One less admission into the hospital, drugs, co-pays, scheduling....but that is just me.  Then you would only need one more surgery for the implants.  I know some people are doing one-step surgery.  Others are opting no implants but DIEP or other types of surgeries like that, and that may require flying somewhere to find the specialist.

    Best to you with your decision.  It is not easy. 

Categories