confused on options

melmcbee
melmcbee Member Posts: 1,119
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi. I felt a lump and had the bx which turned out to be ILC. Had an mri which showed the size to be over 5 cm with 2 other possible tumors. I chose to have a bilat mastectomy and during that procedure the 3 sentinel nodes that were removed came back on the intraoperative pathology as negative. I have been healing from that and just had the drains removed and now I find out the final pathology came back positive with extranodal involvement. So my surgeon wants me to have more test to see if its anywhere else before she does the axillary dissection. She doesnt want to do the procedure if I have a bigger issue going on somewhere else cause she says my lymphedema risk will be so high. My oncologist wants me  to get the surgery and see him the first week of September. He wont start chemo until the surgery is healed. I am so confused. Why do they have to wait so longto start chemo? It concerns me that this stuff doesnt show up on any test very well so I am afraid even if the test are clean that it has already metastasied elsewhere. I feel like everyone else is moving in slow motion but I want this stuff killed with chemo or radiation as soon as possible. How long did yall wait to start chemo or any other treatment. Im having my test Monday and my surgeon said all I have to do is call her and she will do the dissection and port placement at the same time. Im sorry if I am rambling. Im just scared.

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Comments

  • camillegal
    camillegal Member Posts: 16,882
    edited July 2012

    One thing I did learn from cnacer is patience---for the most part they know what's going on and how fast it needs to be done---they'll take their time with u cuz they might be planning exactly what their attack will be.  U'r in a waiting zone now and it's not pleasant but before u know it they'll get started on everything u need---so if u truly trust and like them just know u'r not alone. Good Luck  and I know u'll get a lot of responses with actual facts that will help u.

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  • Momine
    Momine Member Posts: 7,859
    edited July 2012

    Mel, I saw my surgeon on Monday, was in the hospital for biopsy and extensive staging tests Wdnesday/Thursday, started chemo 12 days after biopsy (because they needed all the results in before starting). My surgery came after 4 rounds of chemo and was followed by more chemo.



    I am frankly surprised that they operated without doing more testing prior, but I guess each doc has a slightly different approach.



    I did have nodes involved (7) and some extranodal breakthrough on 2 of them. None of that showed on any of the scans. This used to freak me, but I have decided that if there is some cancer lurking somewhere, as long as I can't see it or feel it and as long as the docs and all their fancy machines can't see it or feel it, there is zero point in worrying about it.

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Mel, If your onc wants to do more scans etc to make sure cancer is nowhere else, that would take a little time to get scans and results etc. Rule of thumb on starting chemo is that you be healed. I started chemo 2 weeks after surgery. I believe most start 4 weeks after. If I were you, I'd ask the nurse or onc to better explain so you understand. It sounds to me like they are doing the right things. I was anxious to start chemo too so I understand where youre coming from. As cami said you are in the waiting game right now. I hope they get it all figured out for you real soon. Hugs, Mazy

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2012

    I was in a slightly different situation than you in that they were able to identify a cancerous lymph node from the get-go because it was 2 cm in size and palpable. Then I went right into the scans followed by chemo. So I'm reporting on my wait time to start treatment, but the steps were the same as you are going to have for the most part (minus any lymph node procedure). I was DX'd on the Monday before Labor Day (8/29/11) so there was 1 week wait to start with. I was able to squeeze the rest including 2 second opinions, 1st meeting with all 3 docs (rads, onc and surgeon), port placement, CT scan, nuclear bone scan, MRI, lymph node biopsy, into about 3 weeks and had my first chemo on 9/26/11. I was at a major university hospital/research center. Perhaps that helped. I think I could have done it in 2 weeks if (a) I wanted to go there every day, and (b) I wasn't hanging on to the false hope that my lymph node biopsy (fine needle aspiration) was going to come back negative. I thought that if it did, I could cancel the rest of the testing. I was not very informed at the time! Maybe you'd want to get a 2nd opinion just for the sake of it and also to find out if they can get you treated more quickly, if that continues to be a concern. But as hard as it is to believe, ILC is a slow growing cancer or so we are all told.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited July 2012

    Thanks to everyone. It makes me feel better to hear from all of you. I know each case is different and I guess I need to take a xanax and calm down and let the professionals do their job. lol. I really appreciate the responses. hugs to all

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