Decisions, decisions

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CarylC
CarylC Member Posts: 230

My surgeon called me today to tell me she had just gotten off the phone with the radiologist regarding my MRI.  None of this is very clinical, just a casual phone call.  She said my right breast was "full" and everything was going to have to be removed.  My biopsy had already shown DCIS in 2 spots each in 2 different quadrants with 2 different microinvasions so I guess I wasn't too surprised at that, I think they were more looking at the left side anyway which hasn't been biopsied yet.  She said the left side didn't look too bad and I needed to decide if I wanted to go ahead and biopsy the 2 microcalcifcations spots that showed up on the mammogram or just do a bilateral.  The radiologist will be on vacation next week but volunteered to come in on his vacation to do my biopsy for me.

I'm so "on the fence" with this.  Do I wait and see?  Go for more testing?  Would I be happy with a lumpectomy on that side, if the biopsy showed it was more DCIS? If I had a bi-lateral, I'm not sure I would reconstruct, if I only do 1 side, that does not feel like an option for me.  

OMG - it is just too much to think about!  And when I called my insurance company to see if there were certain procedures they paid for or didn't - they said I needed the codes.  I'm confused and could use any "sheparding" through this that anyone has to offer.

Caryl 

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2011

    Caryl, I had calcs on both sides.  My right breast turned out to be full of high grade DCIS with comedonecrosis, plus a microinvasion of IDC.  A mastectomy was my only option.  My left breast calcs were biopsied and found to be totally benign - no ADH, no other high risk conditions, just run-of-the-mill benign harmless calcs that will always remain harmless.  I also had an MRI that showed my left breast to be clear.  With that information, I decided to have a single mastectomy.

    In your case, your next step depends on what you would prefer to do from a surgery standpoint. If you would prefer to have a single mastectomy rather than a bilateral, if that's possible, then having a biopsy on the calcs in your left breast makes sense.  Having BC in your right breast does not mean that your left breast calcs are also BC - my case and many others who have been through here have proven that.  So if your left breast calcs turn out to be benign, that could be very significant to your decision.  On the other hand, if ultimately you think you would be more comfortable having a bilateral mastectomy, then there's really no need for the left breast biopsy.

    If you have the choice, which would you really prefer, the single (probably with reconstruction) or the bilateral (possibly without reconstruction)? Let that guide you.   

     

  • docisin
    docisin Member Posts: 5
    edited February 2011

    Hi CarylC,

    It sure is a difficult time sorting through all of the information and various decisions.  I just went through this myself having been diagnosed with DCIS in left breast.  Prior to my diagnosis, I had two wide-local excisions and 5 biopsies in both breasts over the last 14 months.  Upon diagnosis, I created my own "chart" (binder with pathology reports, questions, notes, doctors names, addresses, etc.) I brought this binder with me to every appointment.  I also sought a second opinion at Memorial Sloan-Kettering.  In the end, I decided I had enough of living with fear and anxiety and opted for a double mastectomy with immediate reconstruction - the tissue expander and then implant type.  My surgery was on February 9th and I am in the healing stages now.  My pathology report from the surgery revealed no evidence of carcinoma in either specimen.  Do I regret my decision?  In a word, No - now I am FREE. No more mammograms, no more biopsies, no more excisions, no radiation, no chemotherapy.  Please feel free to write if you think I can help you with any questions or feelings you are experiencing.  Take care and best of luck to you. 

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2011

    docisin, I'm glad that you are happy with your decision and that your surgery went well.  I hope that all continues to go well.  Reconstruction is a long process and with your surgery just last week, you are at the very beginning stages. I found the process with the expander and the surgery to put in the implant to be pretty easy and painless but unfortunately not everyone is so lucky.  I hope that you are.   

    This isn't to contradict anything you've said but I think it's important for Caryl, as she's making this decision, to understand that a mastectomy and a bilateral mastectomy does not completely eliminate the risk of breast cancer. After a mastectomy, a small amount of breast tissue will always be left (I've heard anywhere from 3% - 5%) and as a result, it is still possible to develop breast cancer.  Of course the risk is low - only about 1% - 2% for most women - but it's something that anyone who has a mastectomy needs to be aware of and needs to monitor.   There have unfortunately been many women who've come through this board who have been diagnosed either with a recurrence or with a new breast cancer after having a BMX.  There was one case that I recall where the woman was not aware of the risk so she never checked for lumps and didn't worry when one developed.  As a result, her BC was not discovered until it had become quite advanced.  

    This isn't to scare anyone who's had a mastectomy.  But if you have, please continue to check for lumps just as you would have when you had natural breasts.  

  • CarylC
    CarylC Member Posts: 230
    edited February 2011

    Thank you for both for sharing.  I still don't know which way I'm going but it so feels better to have people who have "been there" to discuss it with!!!!

  • CarylC
    CarylC Member Posts: 230
    edited February 2011

    Feeling much better today.  Spoke with the surgeon yesterday who told me I am ER and PR negative, so no meds after surgery, which is something I was very much not looking forward to.  I've decided to do the double mastectomy ,(I am losing everything on the right side, skin, nipple, she said the DCIS is everywhere) she did talk to me about genetic testing, since I'm hormone negative, she thinks I might carry the gene but I'm not sure if my insurance covers this.  Anyone know anything about this and why I should have it done???

    If the lymph nodes come back clear, then no chemo, no radiation - just new breasts at some point and I can try to put this behind me!  Feeling like there is light at the end of the tunnel . . . oh but I cannot figure out how to put the "microinvasion" in my signature if anyone can help with that too ;-)

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