Where to go for a fourth opinion?

dmarie71

I can't believe this!  I had my first biopsy in Sept and was told everything was benign and I should follow-up with another mammo in 6 months.  I decided to switch to a large university hospital with a reputable breast center to get an opinion whether or not I should have MRIs in the future due to extremely dense breast tissue and fibrocystic breast disease.  When I went for my appt, the BS told me that their pathologists found ALH on the slides from the original biospy at the other hospital.  I had a partial mastectomy and was then upgraded to LCIS in the original biopsy site and ALH was diagnosed for 2 other areas removed.  I was really contemplating PBMX and decided to go to Johns Hopkins for a consult with a PS I had read about.  I was told at that appt (at Johns Hopkins) this week that their pathologists found only ALH (not LCIS) and the other two areas showed benign fibrocystic change and lobular hyperplasia with no atypia?!??!?!  They recommend I send my slides to Vanderbilt University Hospital to have Dr. David Page to decide what the heck I have.  I called Van. today and Dr. Page has since retired but was reassured that he still meets daily with the team and he will look at my slides??????  I am so confused.  What do I do and where do I go to get the BEST and most accurate reading of my slides.  I want to make the most informed decision for treatment but how do I do that if I don't even know what the heck I have?  Any advice?  Thanks!  

Dawn 

Anonymous

I'm so sorry you're on this roller coaster and have been given so many conflicting results. I would go with this 4th pathologist and see what they say. I would insist they come to some conclusion as to what your definitive diagnosis is, as you really need to know that to make informed decisions. PM me if you'd like anytime. I've been living with LCIS a long time now (8 years) and doing high risk surveillance and preventative meds.
anne 

carol57

Dawn, I wish I had an answer for you, but I can chime in with moral support after finding myself in the middle of a similar professional disagreement on pathology. Mine was controversial in only two of six findings, so I made my surgery decision based on the areas of agreement. Even so, I had sentinel node biopsy that I believe may have been unnecessary as a result of the failure to agree (and I have lymphedema as a result).  Really...it is so frustrating when you feel like you want to call in an arbitration panel!  Sending you lots of psychic energy to help you keep on pressing for answers...Carol

dmarie71

Carol,

May I ask what diagnosis you finally "accepted"?  What is so odd is none of the findings are the same at any place.  Now I feel like a need at least 2 more but insurance probably won't even pay for one more.  My BS at Penn State Hershey is contemplating a sentinal node biopsy on my LCIS side if I go through with PBMX ....BUT if I don't even really have LCIS but still go through with surgery for ALH...I really don't think I want to risk LE!  I just want solid answers that I can trust.  Thanks so much for sharing your story with me.

 Dawn 

beacon800

Sorry your situation is so confusing. Want to mention I had BMX for LCIS and no sentinel nodes removed. It is not necessary to remove sentinel nodes if all you have is LCIS. I researched this quite a lot before we did it.

lanie67

I had a similar problem with my pathology. My first diagnosis at my local hospital was extensive ALH. I sent the slides to MD Anderson and Mayo in Rochester and both concurred that it was extensive LCIS. I also went to Mayo,(which does a lot of research on LCIS)for an appt. and found it to be an unbelievable institution and very helpful. After that appt. I felt comfortable with my decision to have a PBMX. Best wishes to you, I know it is a very frustrating and stressful situation.

ArleneMarie

Hi Dawn,

I was diagnosed with LCIS at Penn Hospital and I cannot sing their praises enough.  I see you are from PA so I don't know if you are close enough.  I decided on a PBMX and did not need to have any nodes removed.  They are assorted issues with removing nodes and it was not necessary.  My breast surgeon was Dr. Dahlia Sataloff and my reconstructive plastic surgeon (aka God) was Dr. Louis Bucky.  They were an incredible team!  If you can get in, you may want to have a consult with them.  They made this experience as easy as possible and I regret nothing about my decision to move ahead and eliminate any worry in the future.  Good luck!

carol57

Dawn,

I had diagnostic imaging that led to 3 biopsies, which found benign lesions, however LCIS plus ADH in tissue surrounding all three areas. I have a very extensive family BC history so made my pbmx decision on that information. Then switched my care to a big-city university med center, so I could have a diep reconstruction with the pbmx.  That center of course required second opinion, so reviewed all images and slides.

They disagreed on two LCIS findings (said ADH instead) and in addition said their radiology team could not rule out the need to re-image and perhaps re-biopsy because they suspected a malignancy lurking behind one of the benign lesions, and didn't find the image quality to be adequate to know for sure if another biopsy might be needed.

The SNB was instead of doing that additional biopsy, as I was committed to the pbmx/recon, but of course if med center #1 was wrong and there really was a malignancy, we would want to check for movement through the nodes and treat accordingly after surgery.  So SNB had nothing to do with LCIS or the LCIS/ADH disagreement in some of the tissue, but everything to do with one center not caring for another center's diagnostic imaging.  SNB was clear, and in final path of the removed breasts, med center #2 found LCIS in many more places, but no malignancies. So med center #1's conclusion of no malignancy was accurate. 

Through all of this, I just could not forget my mother, aunts, grandmother, great-grandmother so never wavered on the pbmx.  The treatment decision I made to settle the two-center disagreement was to allow the SNB in lieu of another biopsy; their differences of opinion on LCIS vs. ADH made no difference to my surgery decision, as to me even  the one agreed-upon finding of LCIS was a reminder to me that the family disease was not likely to skip me (I am BRCA neg, but stilll...).

So to clarify, SNB was not related to LCIS, but I will say that having any disagreement at all on the pathology of LCIS vs ADH, in addition to the disagreement on what was visible in the images, was very unnerving.  Continued good luck, Dawn.  At least with LCIS there is not an emergency and you have time to confer, review, and reflect, so you can make your decision thoughtfully. It sounds like you are doing just that, with of course the normal dose of worry thrown in!

Carol