Need to decide by Monday...help!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    I had LVI and was Her2+ and both things were known more than a month out from surgery.  My imaging was done 9/9, biopsy 9/22, diagnosed 9/27, met with BS 10/5 and surgery 11/1 - your timeline is not super unusual for the very reason you state - syncing up physician schedules, and this happens to many of us.  If you trust your BS to have reviewed your info, and have discussed the wait and she has no reservations, you should be ok even though it is hard to be delayed.  I chose a BMX even though I was initially a lumpectomy/5 day rads candidate because my palpable 2cm lump was not seen by mammography.  I didn't feel confident that imaging would be reliable going forward - and it turned out there was both ADH and ALH in the non-cancer breast that was found on post-op pathology.  To pass the time between diagnosis and surgery I took advantage of that period to get organized, do some advance cooking, we even took a mini vacation. I have no extended family close by that was coming to help - just my husband and daughter who both had full-time obligations, so I wanted to feel prepared so that I had no anxiety about things left undone.  I worked up until Friday and had the BMX on the following Monday - work helped me to focus on something besides the waiting which was helpful.  Wishing you the best.

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited April 2015

    Hi there Lulu-- I just want to toss in my 2 cents here about mastectomy and recon. I had a single mast close to 2 yrs ago with expander/implant recon. I had multifocal (meaning all over the place) DCIS, and it was high grade. Surgeon felt it was impossible to remove it without doing a mast. Turns out, pathology after the surgery showed a few tiny tumors of HER2+ IDC that were undetectable in mammo, ultrasound, and stereotactic biopsies of the DCIS. So I was very glad I'd had the mast. Recovery from surgery was pretty easy--I was out and about a week later, looking good in normal clothes. The expander part isn't too much fun, but I'm happy with my implant. My surgery was in early July and in late August, while still with the expander, I wore a bikini on the beach in the Caribbean. I was 51 at the time. I look completely normal in bathing suits, lowcut tops, etc. Naked is a different story--there's no getting around that, but in my case it's weird looking because one is fake and one is real. I don't mean to make light of this AT ALL, but if you have bmx at least you will match!

    You are very young, so it's harder to face the prospect of bmx. In the end, if there is a good chance that it will reduce your risk of more cancer, it's a good thing to do. Living is more important than having boobs.

    Which leads me to my main piece of advice--make sure you get at least a second opinion and on top of that a third. I got FOUR opinions, not about the mast., which I was confident I needed, but about subsequent treatment. Absolutely the best thing I ever did. Also, I strongly suggest getting your second opinion at a major cancer center.

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  • lulu2533
    lulu2533 Member Posts: 108
    edited April 2015

    I just talked to my BS's nurse and asked about LVI. She again stressed that the wait is ok and that my BS is not concerned. She said that alot of women have it and that it is only suspected. I guess because I am grade 1 and the tumor is so small along with the pathology and ultrasound and all the other imaging she ordered she believes that this 6 week wait is fine.

    All the other plastic surgeons are booked solid too. Ugh.

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited April 2015

    p.s. About LVI--The first (very bad, very uninformed) oncologist I saw in my town voiced concern about my "extensive LVI." But the oncologist who I ended up going to for treatment at a major cancer center (and a top onc at the other cancer center I went to when collecting opinions on treatment) didn't even mention the LVI issue to me. Both these oncs gave me the option of no treatment at all based on my stage 1 diagnosis and other factors (which I declined--I did want treatment) and gave me an excellent prognosis. So I came to view the LVI thing as a nonissue.

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited April 2015

    One more post about waiting. I had diagnosis in May, couldn't have surgery till July because of insurance issues. Didn't start treatment (targeted HER2+ therapy, not traditional chemo, on a clinical trial) till early September. My onc was not worried in the least--she said in the world of stage 1 breast cancer a few weeks is not significant. Mentally I was going out of my mind!!!! The waiting for surgery was incredibly difficult--i wanted to get it over with! But it wasn't a problem medically.

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  • lulu2533
    lulu2533 Member Posts: 108
    edited April 2015

    Isabel-that's what my BS is telling me about the LVI too. Doesn't make it much easier though.

    I'm trying to tell myself that I will be fine waiting these 6 weeks. It is just really hard knowing what is inside me...potentially growing and spreading. Now my brain is on overdrive and I am having all these weird twinges and tightness. I just keep hoping that there is a cancellation and I can get my surgery sooner. Maybe I should just get the bmx and not do reconstruction...I hate that I'm going to keep second guessing myself.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015

    You could do reconstruction later....it's not a now or never sort of thing.

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  • lulu2533
    lulu2533 Member Posts: 108
    edited April 2015

    I wanted to have the least amount of surgery and recovery time as possible. With my job it's hard to take off alot because of the work we do and the limited amount of people that work in my dept.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015


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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited April 2015

    Lulu, in terms of your worries about recovery times: if you decide on bmx, you will most likely be fine within 10 days (or less). I was fine after a week with single mast. and simultaneous expander placement. The "fills" for the expander take no time at all--I think I went to the plastic surgeon's office once every couple of weeks for 10 minutes. I already don't even remember--it was that uneventful. Yes it's painful when you get home, but Advil was effective. And yes it's painful to get up from lying down, but I just found the whole thing not as bad as I feared. Exchange surgery (expander for silicone implant) happened months later as an outpatient--I was driving the next day.

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  • lulu2533
    lulu2533 Member Posts: 108
    edited April 2015

    Thanks Isabel- really appreciate your comments. I appreciate everybody's comments!! I just hope my decision to wait for reconstruction doesn't come back to bite me in the you know what.

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  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 296
    edited April 2015

    I was diagnosed April 7th, 2014 and had my BMX June 5th, 2014. It felt like a long wait.

    Shirlley

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  • sorchatavie
    sorchatavie Member Posts: 5
    edited April 2015

    Thank you so much for posting this. It is exactly the type of information I need as some well meaning family members are really pushing for the MX but I need to know the pros & cons of both.

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