Seeing Breast Surgeon Monday

texasdonna
texasdonna Member Posts: 36
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Here's my MRI report from 2 weeks ago: there's a .72cm x .35 cm x .42 cm ovoid lesion in the left breast adjacent to the implant, .91 cm from the skin and 7.2 cm deep to the nipple.  Kinetic curve shows rapid rise and rapid washout.

I went to my oncologist for follow up and a plan, but she didn't have any idea what the MRI results meant. She didn't know "rapid rise and rapid washout" terminology. She told me "usually the radiologist will tell me if something needs to be biopsied but he didn't interpret this for me".  EEK!

I sat there numb. Completely frozen at the thought that my onc was a paint-by-numbers doctor. I told the girls at work (3 of whom have had breast cancer themselves or in their families) and they all told me about a terrific breast surgeon nearby. I have an appt with her on Monday.  The 1st sign that she knows what she's doing? She asked for the actual disc of my MRI.  Yea!  Now I'm just hoping she'll want to do a biopsy. With a history of ILC 3 years ago, you wouldn't think they'd want to just watch and wait when it's already been there for a year, would you? Am I right in wanting to get this thing out? 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Donna - did the MRI report give it a BIRADS category? I'd get a new onc if I were you - that's totally unacceptable. I don't want to upset you, but rapid rise and rapid washout is indicative of malignancy (which you may already know) - it's got to come out. The 3 spots that showed on my MRI were slow uptake and persistent delayed phase - and one of them turned out to be a cancer - they were rated as BIRADS Category 3 - probably benign.

    Don't just hope the surgeon will want to do a biopsy - insist on it!!!

    Sue

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  • texasdonna
    texasdonna Member Posts: 36
    edited December 2010

    Thanks so much, Sue! Yes, I saw that rapid rise and rapid washout usually indicate malignancy, so I really couldn't believe it when my oncologist didn't have a clue what the terms meant. I immediately went home and started looking for a new onc.  Thanks for the suggestion with demanding a biopsy. That was my 1st thought, but I didn't know if others would agree. It helps so much to hear from other people.  My BI-RADS classification is confusing. On one page it says, "0--Need for Additional Imaging Eval" with "Recommendation for Additional Views", and on another page it says "Addendum: BI-RADS Classification 3--Prob Benign Finding" with "Recommendation of 6-month Follow Up", based on an ultrasound that I had at the mammo clinic in which they couldn't see the nodule because it was on the chest wall and not in the breast. I've got silicone implants post-mastectomy, so there's very little breast tissue left. I feel like I'm watching an episode of the Keystone Cops or Monty Python's Flying Circus with these goofy doctors. Glad I'm seeing a very renowned breast surgeon Monday. Thanks so much for your input!

    Donna

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  • catbill
    catbill Member Posts: 326
    edited December 2010

    When the information you have is not clear, keep asking questions until it is clear.  I'd be asking them of a new oncologist, too.

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  • ktn
    ktn Member Posts: 181
    edited December 2010

    I think you will learn alot more from your breast surgeon. They are really the experts at what to do now. The oncologist takes what they learn and then forms a plan. I knew I would need mast, chemo and radiation before I even met my oncologist. Don't panic til you meet with the surgeon. And good luck!

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  • texasdonna
    texasdonna Member Posts: 36
    edited January 2011

    Well, it was helpful, but it was also frustrating. The breast surgeon couldn't find the nodule on the MRI. Too many pics (hundreds) and not enough time. So...she did an ultrasound in her office which showed the nodule (7.2mm x 4mm x 3mm) under the reconstruction scar near the left chest wall. Great, right? Cut it out and send for a biopsy? No.  Watch and wait. Probably nothing to worry about even though it shows a kinetic curve of "rapid washout" on MRI. She told me I could either keep an eye on it or have a PEM scan to see if it lights up. Really. She and my onc both said that since my ILC was stage I, that the chances of it ever coming back are remote. I don't care. If there's the slightest chance that this is a recurrence, I want it checked out. Ugh!

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  • toomuch
    toomuch Member Posts: 901
    edited January 2011

    Donna,

    I know that I would be going crazy with the information that you have. Even with rapid rise and washout it is possible for a lesion to be benign but I would want to know for certain. I would ask the surgeon to order a PET scan if he offered that option to you. Malignant lesions have markedly increased sugar uptake compared to benign lesions. If there is still a question after the PET scan, I would recommend getting a 3rd opinion possibly at a NCI designated cancer center. I'm sorry that you have been having to deal with this through the holidays.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited January 2011

    I agree with toomuch.  A PET scan might provide more insight.  If it shows a lot of glucose activity then it should be dealt with.  It's already close to the chest wall and if it's malignant then you want to deal with it while you can get good margins.  I think you are doing the right thing by continuing to pursue for answers.  A third opinion is very reasonable considering the situation.

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  • texasdonna
    texasdonna Member Posts: 36
    edited January 2011

    I really appreciate the feedback. My surgeon is setting up the PEM scan for sometime in January and I'm so relieved. Either way, I'll know something. Hopefully it's just scar tissue or a fibroadenoma, but even if it's a recurrence or a new primary, we will have caught it early. Insurance dictates that I go only to Texas Oncology, so I'm stuck with the doctors in the various offices that are affiliated with that group. I have a Cigna HMO and am a little concerned about limitations on care based on what the HMO will allow. They've been cooperative so far, though.

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  • Gitane
    Gitane Member Posts: 1,885
    edited January 2011

    I think it is standard for the HMO to have to pay for a second opinion outside the HMO.  I may be wrong about this, but I know it is done here in California.

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  • texasdonna
    texasdonna Member Posts: 36
    edited January 2011

    Really? That's good to know. Hopefully it's the same in Texas. Luckily, we have quite a few different offices in the DFW Metroplex, so getting 2nd opinions has been relatively easy. You just have to know when you need a surgeon instead of an oncologist because the onc I was going to kept trying to figure things out on her own when it wasn't her area of expertise. If a CT of the chest won't show a nodule on the outer chest wall, but a PEM scan will, then get a PEM scan. That's what the surgeon said and I feel very comfortable with her.

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