PLCIS - Need information

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2014

    Piedpiper, my take on this is that if I should get in a loop where I start having frequent biopsies and get tired of dealing with it I can always change my mind, but I'm not going to waste a lot of time worrying about something I have little control of and that likely will never happen anyway. Heck, they encourage lumpectomies & discourage mastectomy with DCIS unless it is in an area that is very large and high grade.

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  • EmmaW
    EmmaW Member Posts: 20
    edited June 2014

    Just wanted to give an update here. I had the MRI and they found a 9cm area of pleomorphic LCIS. But because the area was so large, they had no way of knowing what else was there and had to remove the entire area to biopsy. And since there was no way to remove 9cm without removing the entire breast I had a mastectomy and removed the other side as well. Two weeks ago.

    BUT...pathology came back with invasive cancer. ILC. Multifocular. It didn't come out on ultrasound or mammogram. We're waiting to find out what the treatment plan will be when the full pathology report comes back.

    Surgeon said to me, "You saved your life." 

    Insane. 

    Beginning to think that this whole breast cancer thing is a crapshoot. You just never know.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2014

    Emma, I'm sorry about the unexpected findings. (((Hugs)))

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  • leaf
    leaf Member Posts: 8,188
    edited June 2014

    Beginning to think that this whole breast cancer thing is a crapshoot. You just never know.

    I think you are right. What a shock.  My heart goes out to you. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Emma--sorry to hear they found ILC. Do you have to do any further treatment? (chemo, radiation, or meds?)

    anne

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  • EmmaW
    EmmaW Member Posts: 20
    edited June 2014

    I don't know the treatment plan because I really don't know anything. I called today and the full pathology report just came in, but the nurse at my surgeon's office said, "The doctor will have to speak with you." 

    Nothing is more worrisome than hearing, "The doctor has to speak to you." I mean, every pathology report up until this point was delivered over the phone. The only time I had to hear it from the doctor was after the surgery when I had to go in and let the surgeon tell me that they found cancer and thank God you caught it and the sentinel node biopsy was clear. 

    So what could possibly be so bad here that they need the "doctor" to tell me the results?  

    Maybe I'm being paranoid. 

    But still. I have a bad feeling about this.

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  • leaf
    leaf Member Posts: 8,188
    edited June 2014

    At my hospital, no one but a doctor is allowed to tell you a diagnosis or treatment plan, even if its benign.  Even if your doctor had a different policy before, maybe they had a bad experience with a staff member telling a patient about a diagnosis or treatment, when someone didn't do it correctly or with sensitivity.  Or maybe they haven't completely decided on a plan - maybe your case is unusual and they want to consult their 'tumor board', where a group of physicians get together and discuss unusual or difficult cases.  Many hospitals/groups have them every few weeks/months.  And/or, maybe a chemo they want to use is in short supply and they're not sure which chemo would be best.

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  • Mary_momof4
    Mary_momof4 Member Posts: 1
    edited May 2019

    I was just diagnosed with PLCIS also. Doctor recommended lumpectomy with reconstruction. From the literature I’m reading it is common to be upstaged to something more than PLCIS after final surgical pathology. I’m really leaning now to a double mastectomy because I have four young kids and I’m only 40. I would love some advice on this too

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  • girlygirl13
    girlygirl13 Member Posts: 9
    edited May 2019

    First off I'm so sorry that you are going thru this. It can be all consuming , it was for me. My recommendation to anyone in this situation is to do the research first on statistics and different protocols. I would highly suggest looking up Donna Blaulock Pinto she has a website with a ton of current information on dcis which sometimes plcis gets treated as after surgery do to additional findings or because some surgeons feel it is the best protocol. I had a bilateral mastectomy and it was recommended that I do chemo and radiation . I however chose not to go any further then that and decided to make some lifestyle changes including moving to a plant based diet and no alcohol. I followed a modified gerson therapy plan following my last surgery. As I mentioned do your research. You can always change your mind going from lumpectomy to mastectomy if necessary but not the reverse. And keep in mind plcis is not cancer. The other thing I want to mention is they are now finally admitting that implants can put you at risk for other types of breast cancer so consider that too. Hope this helps

    God bless Proverbs 3 : 5,6

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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited June 2019

    Thanks for sharing, girlygirl13.  I agree that research is important!  For how long after your surgery, did you follow your modified Gerson therapy plan?

    Lori

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