Waiting 6 more weeks for surgery???!!!

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Truffles1968
Truffles1968 Member Posts: 33
edited November 2015 in Surgery - Before, During, and After

I was scheduled for a BMX on 11/9/15 locally. I went to Johns Hopkins Monday for a second opinion and decided to have my surgery there (5 hours from home). The scheduler just called to tell me I am on the schedule for 12/17/15! I have young triplets, I can't imagine having surgery the week before Christmas. I planned on spending 2 weeks up there at my parents' house recovering so that I could get the drains out before coming home. I am so upset. I can't imagine waiting so long. I was dxed 3 weeks ago and thought waiting month for surgery was brutal. This is just awful.

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  • dtad
    dtad Member Posts: 2,323
    edited November 2015

    Truffles1968 So sorry you have to be here but welcome. IMO its much more important to be treated at a great facility and wait a few weeks. Actually If you would prefer to wait until after Christmas I think that would be fine too. Weeks and even a few months will not make a difference in your overall outcome. Its the emotional aspect of waiting that is hard. I was diagnosed in March and had my BMX in May. My breast surgeon at a top NYC hospital told me it took years for the cancer to grow so a few months will not make a difference. Do whats best for your and your family. Good luck and keep us posted.....

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  • lekker
    lekker Member Posts: 594
    edited November 2015

    Sorry that you have to join us. One thing you might consider - asking about neoadjuvant (before surgery) endocrine therapy. This is sometimes done to try to shrink a tumor before surgery, but in your case maybe it could be used to safely delay surgery until after New Years. With hormone receptor positive ILC, you will most likely be prescribed tamoxifen or an aromatase inhibitor (with ovarian suppression if premenopausal) after surgery so it might be possible.

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  • QueenElizabethTheFaux
    QueenElizabethTheFaux Member Posts: 41
    edited November 2015

    I can completely relate to your post, Truffles1968. This is driving me crazy, too.

    I feel like I've been going to numerous appts, having test after test, procedure after procedure and still don't have a surgery date set. My mammogram was done Sept. 1st. and I was diagnosed Sept. 17th. I did do a second opinion appt with one oncologist but decided to stay w/my original hospital (based on that oncologist's preference for the chemo and 5 yr drug my original hospital will use.) That appt. didn't interfere with any appts w/my current Drs.

    Yet, they still haven't set a surgery date set.

    I was finally called back this morning and was told a surgery date would be set. But guess what? No one called me back today to tell me the date. (Even though I told them I was concerned because 1.) A lot of time and passed already and 2.) My insurance deductibles "reset" on January 1st.)

    So yes, you have every reason to be upset about waiting for six more weeks. I don't have any suggestions for you. I'm just acknowledging your frustration is understandable and I feel like I'm in the same boat.

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  • NJ-Jen
    NJ-Jen Member Posts: 64
    edited November 2015

    I can relate. I got diagnosed in early October and I still don't have a surgery date. I am going nuts

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  • Truffles1968
    Truffles1968 Member Posts: 33
    edited November 2015

    Thank you all. QueenElizabeth and NJ-Jen I hope you get your dates soon!

    The scheduler is trying to coordinate the doctors and the OR to get me in the first week of December, so I am calming down, 2 weeks earlier is 2 weeks of less stress. They think they will be able to tell me a date on Monday the 9th (my original surgery date).

    Dtad that is exactly what the surgical oncologist at Hopkins said, the surgery is not a medical emergency since ILC is a slow growing cancer. It has been there for a long time- but I didn't know it. Now that I know I want it OUT :-)

    Lekker thank you for that idea, if I did neoadjuvant I would feel like I was doing something to get the cancer but they don't do it pre surgery for my size tumor.

    This is such a wonderful support network, I would be lost without it.

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  • sandcastle
    sandcastle Member Posts: 587
    edited November 2015

    NJ-Jen.....I was Diagnosed in Sept of 2010 and my Surgery was in December of that year.....I also live in Jersey....Liz

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2015

    My bmx was Dec 15, 2012. My drains were out by Christmas. All things considered, I felt pretty good for the big day.

    Sure, you want this OUT yesterday. That's normal. There may be more tests. You may get a port for chemo. You are going to one of THE best ca centers in the country. They know their stuff!

    Stay as busy as you can, do your Santa shopping early. Remember to breathe! Take care of you, ask for help when you need it.

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  • chiefswife
    chiefswife Member Posts: 70
    edited November 2015

    I feel your pain, I was originally diagnosed with breast cancer back in May 2010, with Invasive Lobular, I went with a lumpectomy, chemo and radiaition. I was on Tamoxifen for the entire time. Here I am again with more cancer, this time I'm having both of them removed and having a DEIP FLAP reconstruction surgery. I was diagnosed on Sept 22 and here I sit with no surgery scheduled as of yet. I keep having to get too many tests out of the way. Hello..........................get this out of me now.

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited November 2015

    Waiting is so, so hard and there is a lot of it when you have cancer.

    When I had my diagnosis confirmed I knew the surgeon I had chosen was going away for almost 3 weeks. I spoke to him RE: my concerns about the delay. He said in his professional opinion the wait would make absolutely no difference to my physical outcomes. He did go on to say, "however mentally, waiting is very tough" and gave me the option of seeing another surgeon. He is the best in the region and I chose to wait. I haven't regretted my decision. He did recommend that I see my GP and get something to help me sleep, which I did. It made such a difference. I found that I was so much more productive and far less emotional during the day when I could sleep at night.

    Wishing you well on your journey. Hugs Donna.

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