4 Drs. and Several Mistakes! HMO Nightmare!

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lipstik101
lipstik101 Member Posts: 2
edited November 2014 in Just Diagnosed
4 Drs. and Several Mistakes! HMO Nightmare!
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  • lipstik101
    lipstik101 Member Posts: 2
    edited November 2014

    Hello All:  

    I found my lump in Feb.  I had clear mammas, ultra sound, and CT.  First General Surgeon (don't recommend a General Surgeon.... Specialist for Breast better) said to skip the MRI and do a lumpectomy.  What do I know.  Nothing at that point.  Positive for cancer and recommended a new lumpectomy to create clean margins.  No Chemo, radiation, just pills to block ER and PR... both positive. Easy Breezy right???  

    Went to the 1st Oncologist opinion: He said, too late for Chemo first... he would have recommended it, however since I already had one lumpectomy it was a mute point.  Still no MRI or a request from anyone... but me.  I was ignored.  Lymph nodes exploded after the lumpectomy.  2 hard rocks... 2 cm. each.  No I am spinning.  2rd opinion (surgeon)  said, "You need chemo first to try and shrink those lymph nodes and original lump 5.2 cm.  A new lump appeared larger sort of connected.. right breast only.  Surgery after... may be a candidate for nipple conserving./?  But wait, wasn't it a mute point to have chemo first??  More confuse.  I wanted a 3rd opinion to see if someone might agree... 3rd surgeon said... "Absoulutely not!  There have been trial after trial that proves ILC does not respond to chemo first.  And no you are not a candidate for Nipple Conserving surgery.  Modified radical mastectomy... reconstruct after a year.. plus 4 mos. of chemo and followed up w radiation.  OK people.. can anyone agree???

    I decided to go to an out of network oncologist... not associated with a surgeon.   She was wonderful.  Chemo first, surgery (double) and radiation.. reconstruct w expanders first while doing radiation.  What do you think about having radiation wi expanders?  I heard that radiation can melt implants???  

    I don't want to wait a year.  56 years old and very active and athletic.  So stressed about the up and down opinions.  Now my insurance won't aloo me to use the out of network Doc... oncologist.  The other Drs. failed to notice that I needed an MRI.. this revealed everything.  Still only in r breast... Im opting for both off.  My HER2 was inconclusive and a second test said negative.  Two different types of tests.  My new lovely oncologist said that she wanted a new pathology done at an expert lab for HER2 (USC Dr. Pratt).  I convince my insurance after appeals to approve it.  The original Pathologist had a temp receptionist and she didn't order the block to create a new lab sample... from my frozen biopsy.... 

    I think I may be writing too much and no one will read this script!!  Sorry.

    Finally, any thought on the Penguin Ice Cap?  I am going for it.  Expensive but would love to not lose my hair.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2014

    Please do not apologize for a lengthy post! We are happy to read it! 

    Have you decided on implants vs any other kind of reconstruction? http://www.breastcancer.org/research-news/2008112...

    This may affect whether or not you have immediate reconstruction, or delayed. 

    As for selecting your treatment team, do you think you would like to find a treatment team that is not the original ones, but still in your network? This will depend naturally on where you live, and the options. 

    As for the Cold Caps, there are a number of active forums discussing, and probably worth reviewing, as well as an article we have on our site:

    Conversations:

    Cold caps for hair loss with chemo treatment
    Cold Cap Users Past and Present, to Save Hair

    Article:

    http://www.breastcancer.org/tips/hair_skin_nails/c...Let us know how things develop! 
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  • vbishop
    vbishop Member Posts: 616
    edited November 2014

    I am sorry you've had such a horrible experience. I am surprised by the series of events. In breast cancer, the oncologist drives the bus. I met with my General Surgeon first, then my oncologist, then my plastic surgeon. We decided on the course of action as a team and I wouldn't trade any of my team members for anything! Even though they all came from different practices (no affiliation whatsoever) you would think they were all affiliated by the way they were in constant communication with each other in the early stages: the tests, results, treatment options, etc. They still communicate over 12 months later.

    As an ILC gal myself, I can tell you that my doctors also told me that studies prove chemo does little for ILC pre-surgery. So what you had been told before is correct, yet some women on the boards have had some success with pre-surgery chemo to shrink the tumor. I am also surprised about the talk of radiation while trying to do reconstruction. Radiation can be so harmful to the skin and can make reconstruction more difficult or even take that option off the table for a bit. Case in point, I was in the middle of reconstruction when the doctors thought I may need to do radiation because of a close margin. Luckily I dodged that bullet, but my plastic surgeon made it very clear that we would have to stop reconstruction until after radiation was complete and even then there were no guarantees. It would all depend on the amount of skin damage, if any.

    As ILC is notorious for NOT showing up on imaging, I am not surprised that no one ordered an MRI. With ILC slow to grow, many docs will order a sentinal node biopsy first to see if the cancer has moved outside the breast. If so, then additional scanning, whether it be an MRI or PET or CT, is ordered.

    Nipple sparing surgery not an option does not surprise me either.

    Based on what you've posted, I am still not sure you have the correct team in place. Good luck!


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  • vbishop
    vbishop Member Posts: 616
    edited November 2014

    To get you ready for the Christmas Season. One of my favorites:

    Beautiful!!

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