DCIS - 2nd Opinion

CandDsMom

Hi All-

My first post so bear with me:

I had baseline mammogram at age 32 12/07 6 weeks after breastfeeding my eldest son - normal (started early due to a family history of my father's sister being dx at age 28 with breast CA).  I couldn't have one last year due to being pregnant so had my screening mammo 2/10.  Was called back for a diagnostic 3/2/10 and told by radiologist that the indeterminate microcysts and calcifications they saw were likely due to recent lactation (stopped breastfeeding my baby 11/09) and to come back in September 2010 or "if you develop a lump."  I was told I had a 2% chance of the findings representing cancer.  With 2 young boys (10 months and 3 years old) at home I couldn't accept that risk so made an appointment with a breast surgeon 3/23/10. He also told me that it was most likely benign (my GAIL risk was .4% for developing breast cancer this year) but would order the biopsy to assuage my anxiety.  Ultrasound guided core bx x 2 happened 3/30/10.  The radiologist present at the procedure (same one from the diagnostic mammogram) told me "this will make your anxiety better."

Long and the short of it I was diagnosed with multifocal DCIS ER/PR (-), BRCA (-). I opted for skin sparing bilateral mastectomy with R sentinal node biopsy 0/3 positive 4/14/10.  I had a tram flap bilateral reconstruction at the same time.  

My preop MRI showed a ~8cm area in the right upper outer quadrant that was very suspicious for invasion.  My final path report showed DCIS in 4/11 slides, no diameter greater than 0.5 cm (one of the original microcysts biopsied was 0.7cm, the other 0.3cm) so I had it presumably in total of 6 places.  My margins were clear >1cm to the chest wall and >2cm to the skin.  No invasion or microinvasion was noted.  ER/PR negative, Her-2 status still pending.

My question for you is this: given the multiple areas of DCIS as well as the significant concerns my oncologist had about this being invasive (I was prepped that I was most likely going to need a port, chemo, etc) I am concerned that perhaps I need a 2nd or even 3rd opinion on my pathology just to make sure - I really wouldn't want to find out in 6 or 12 months that I should have had chemo now.  But I know I am really anxious about everything and also a little distrustful since I had to push so hard to even get my diagnosis made.  FYI my oncologist now actually reviewed my slides with the path people here so feels comfortable with the diagnosis of DCIS.

I have heard about Dr Michael Lagios but was also thinking about Mayo.  My initial surgery, etc was all done at Northwestern Memorial Hospital in Chicago, so a reputable place.  Has anyone else had experience in getting 2nd pathology opinions and if so, where?  Anyone else in my situation in general?

dlb823

Welcome to BCO, CandDsMom -- although I'm so sorry you have reason to be joining us...

It never hurts to get a second opinion, pathologies included.  I did, and I ended up switching medical teams.  My situation was different from yours, but the bottom line was, my new team did not agree with the bothersome finding in my initial pathology that had prompted me to seek a 2nd opinion... AND they found something else that turned out to be a pretty significant oversight by my first, extremely well-respected breast surgeon.  So, I'm all for second opinions, partly because no one seems to know everything about breast cancer, and by seeing additional docs, we always glean helpful information to guide us in our treatment options.

As far as where to go, I don't think you can go wrong with an NCI-designated hospital, such as Mayo.  Here's the complete list if you want to see who else is in that esteemed group:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Good luck, and please let us know what happens ~  Deanna

sunnyhou

I would go ahead and get a second opinion. You will not be able to rest until you do. I can tell in your post. I felt the same way. I live here in Houston and did not go to MD Anderson because everyone thought it was not necessary. I did however have my slides sent to them for a second opinion. They agreed with everything but said my right side wich was suppossed to be all clear had ALH.. So I did the right thing by going bilateral. It was so easy to do. I called the path dept at the hospital I had the mastectomy at and they sent me a form to fill out, I faxed it back and they took care of the rest (billing my insurance etc). I called MD Anderson and made sure they arrived and they told me the report would be ready in two weeks. I called in two weeks and asked that they fax me the report. I had it that day. I highly suggest you send your slides somewhere. It will give you peace of mind.

good luck

sunnyhou

also your insurance should pay for a second opinion. I have really crappy insurance and even they payed for it. Although if you have to pay out of pocket it is relatively inexpensive as well. Well worth the peace of mind....

kittycat

I would definitely get a 2nd opinion, if I were you.  It doesn't hurt - that's for sure! 

Good luck!

lh88

I was DXed with a recurrence just as my hospital was going bankrupt, so the MX which was recommended by my BS could not be done there. I had to wait 6 weeks for a second opinion, which I got yesterday.

I had another appt. for a second opinion but could not afford the $400-800 fee since I haven't met my deductible for out of network and my insurance only pays 50% anyway.

You can imagine my shock when my new BS told me yesterday that she didn't think I needed an MX!

I am now scheduled for an excision; I couldn't absorb the details yesterday. Maybe Tamoxifen or something else? I have to email the nurse with the new questions!

But a second opinion for something this important? Yes, yes, yes! I might have had a mastectomy already!

Lil

DCIS, 5/2007, lumpectomy, 33 rads.

Deirdre1

I too had a second opinion but I opted for a hospital that had a good track record with cancer and specifically DCIS, Vanderbilt, but there are plenty of other hospitals that would fill the bill and I would think Mayo would be one.  I found the second opinion a bit confussing at first (until I understood DCIS better) but it did reinforce the dx.  Second and third opinion are always a good idea - even if you have to pay for it out of pocket! 

As Lil shows above doc's differ about how to handle things and they usually just advice whatever they are most comfortable with doing (which doesn't always equate to what is best for you).. and unfortunately Lil may also be showing the way doc's respond to different insurances too.. (that isn't to say Lil that you should have a mx only that there are definately many approaches to the treatment of  DCIS).

Doc's are still confussed about how to treat DCIS but with a sentinal node that is positive I imagine that that puts you into a different classification altogether, as well as the ER-/PR- statues - a more serious classification..  So what harm could there be to a 2nd opinion.  Also if you didn't have a Her2 test on the pathology tissue you might want to look that up and include that in your prep work..  Her2 isn't immediately done for DCIS but as I said the positive sentenal makes it a bit more important.

And I know I am a broken record about this guys, but if you haven't included a therapist to your team please consider doing that.  So many people (and doc's) will have their own approach, their own "if I were you" it can tend to muddy the waters for you and make it difficult for you to decide.. This is a time when you really REALLY want to hear your OWN voice.  Family's opinions are a blessing for us but honestly in this type of situation you need to hear what your inner voice is saying and a therapist will help you do that!  Good luck and I hope you get everything you need and have the best outcome!!!  Take good care of yourself!!!  Best Deirdre

lh88

The insurance problem is ongoing. At my former hospital they took care of 97% of the paperwork, bills, and insurance related issues, once I had provided my info.

I'm now at Memorial Sloan Kettering CCC and it already seems like I will have to be more pro-active, even though they are in network, though my BS isn't. She came highly recommended by three sources: a patient, a nurse, and my former BS. She spent some time explaining the spectrum of DCIS and where I stood, and I am comfortable with her recommendations so far.

(I will ask about the HER-2 test!)

Lil

DCIS, 5/2007, lumpectomy, 33 rads.  Recurrence DX, 3/2010

Deirdre1

It's a long journey Lil but you're doing a great job for yourself so hang in there!  All of us who have been through this know how scary this time is as well!   Sloan Kettering is very good and you have great recommendations to this particular bs and if the bs isn't in your "network" call and ask your insurance company if 1. they can add her  and if not 2. how much your percentage will be with her (I'm assuming you have a PPO and not an HMO) so you go into this with your eyes wide open financially..  You are being very pro-active and that will serve you well in the long run!  Keep us informed if it doesn't take too much time out of your crazy schedule right now.. You're in my thoughts and heart - best of luck!!!  Deirdre

lh88

Thanks Deirdre1!

I was totally brain-fried for a while after the recurrence DX. Then I went into research mode. Just have to readjust my focus again!

I've just started at MSKCCC so have to figure out what they do.  I was laid off, so am back consulting; can take advantage of all the services a large CCC can offer.

I had settled myself to accept the single MX at least; it's weird to rethink and gear down from that level of preparation. Glad to be keeping my parts, at least for now!

Lil

5/2007, DCIS, lumpectomy, 33 rads. Reoccurrence, 3/2010, same DX, same place. Surgery 5/19.

Deirdre1

Well if I had a "do over" I wouldn't have the bi-lateral - it really sounds like a solution until you realize what you have lost.. so hold on to those parts as long as you can!!!

CandDsMom

Deanna, sunnyhou, kittykat, deirdre1, lil - thanks for the words of advice.  In many ways although my surgeon, onc, etc have been great I have felt adrift since my surgery so it has been helpful to hear from others about their experiences so that I can make a more informed decision.  I am going to a counselor tomorrow too which I think will be helpful as I am really emotional and anxious about this whole thing.  My path specimens are going to Mayo for a 2nd look.  I did also hear from my breast surgeon and onc that I got presented at tumor board on Monday (it turns out Northwestern is an NCI Center as well) and 2 additional pathologists also agreed - DCIS only.  At my request they are also going to examine some more of that 8 cm abnormal area from tissue that they saved after my bmx. So I will let everyone know...

Deirdre1

Good for you CandDsMom!  You are being so pro-active for someone whom I'm sure is really scared..  You are really doing a great job - so I have great hopes for your outcome and your being able to accept all you need to.  Good luck with the "second look" at the tumor board!  I'll be think'n about ya!  Take good care, Deirdre

Red_Bubbles

I had a second opinon too

I think it is always good to hear another opinion on such diagnostic.

MGH, Mount Auburn and Dana Farber,Birgham and Women#s Hospital