Just diagnosed -- when to get second opinion?

Eloise

Hello, sisters.  I'm yet another newbie trying to make sense of it all, and figured your collective wisdom could only help!

I'm 53, post-menopausal, 0 family history of breast or ovarian cancer (lots of others in my family, but none that have genetic implications).  Had a stereotactic core biopsy two years ago for suspicious calcifications; it was negative (but I had the opportunity to do a lot of research while I was waiting, including finding this site and bookmarking it for future reference!)  This year I had a screening mammo in July, repeated in August for more calcs in a linear pattern in the same (R) breast, stereotactic biopsy #2 10/18 (I had to wait a while because I have a neck and back injury and couldn't lie still long enough until this month). Got a DCIS diagnosis from the radiologist 10/21 and met with a surgeon today, 10/26. The path report says DCIS Grade 2, cribiform, ER+ (strong), PR+ (weak to strong, variable).  It's a single focus....radiologist described it as "tiny". 

The surgeon wants to do a wire localization, wide excision biopsy. He said he'd be removing a piece of tissue about the size of a walnut but doubted very much there would be much cancer left in it, if at all -- the radiologist did a second mammo after the biopsy and said all the calcifications were gone. Surgeon thinks unless the path report from that indicates something higher-grade than the first biopsy, that that would be the only surgery, no further lumpectomy needed. 

My major question is -- if I want to get a second opinion on the pathology, from Dr. Lagios or from another pathologist in my insurance plan (I have Kaiser), is it useful to do that now, or would I wait until after the wide excision when there's more to analyze?  Since we only have core-biopsy needle-sized bits of tissue, we don't yet know what the margins are or the size of the cancer...do I have that right?  I have a pretty high tolerance for risk...much more aversion to possible side effects now than to an extra percentage point or two possibility of recurrence down the road...so if the recommendation after the wide excision was no rads or drugs needed, that would be great and I might not bother with a second opinion. 

Anything else I should be thinking about? 

And many many thanks to all of you who are here using your experience to help others. This is a really excellent use of technology.  

Cowgirl13

Eloise, I don't know if a mammogram can catch all calcifications.  Someone will post here shortly who has more info than I do.  Glad that you checked in.  You will find much support and a great deal of good information.

I also live in SF.  Received my treatment at California Pacific Medical Center. Good luck.  Tell us how it is going. 

Beesie

Eloise, to Cowgirl's point, if you have not had an MRI, you should see if you can get one.  Often MRIs can be more effective than mammos at 'seeing' the whole area of suspicion.  My mammo showed a lot of calcs but my MRI showed a much bigger area of concern.  The MRI was right.

As for the 2nd opinion, since you are planning to have the area excised (an excisional biopsy and a lumpectomy are actually the exact same surgery), I would recommend that you go for the 2nd opinion once you have the larger sample available.  There may be questions then about whether the margins are clear or not, or how wide the margins are, and the answer to those questions will determine if you need more surgery and/or if you need radiation.  So since having the surgery now is not in question, I think it's better to go ahead and get the 2nd opinion at the time when you will have more decisions to make.

roseg

I'd wait until I had the bigger sample.

Pathology results are generally already reviewed by two pathologists.  Are you concerned they could have missed something invasive?

If your area is smaller than 5mm then no further treatment is a standard of care and I would be happy to take that and run run run away from any more medical interventions

SJW1

Eloise,

Since some DCIS can not be seen with a mammogram, because there are no calcifications, an MRI might be a good idea. If there is an Aurora RODEO MRI in your area, because it uses different technology and was developed as a dedicated breast technoloy, it is best at finding DCIS.

The only reason to get a 2nd opinon before your surgery would be if you are not sure you have DCIS and might not need the surgery. I did consult with Dr. Lagios before my lumpectomy for that reason. I then consulted with him again after my surgery because I supposedly did not get clean margins.

He not only disagreed with my local pathologists about my margins, but also calculated my risk of recurrence as only 4 percent, using the Van Nuys Prognostic Index. Because of this it didn't make sense for me to have radiation for the approximate 50 percent reduction that radiation typically provides.

Dr. Lagios also said that tamoxifen would only lower my risk of recurrence by at most 2 percent. That is why I chose not to have radiation or tamoxifen, but instead chose to further reduce my risk through lifestyle changes.

Please feel free to send me a PM if you want to discuss any of this further.

You can also find more info at my website:https://sites.google.com/site/dciswithoutrads/home

Hugs and best wishes on your DCIS journey,

Sandie

Eloise

Thanks everyone.  This is very helpful. 

Today was the day I met with my supervisors to tell them I needed some time off and they were extremely supportive.  I knew they would be in theory, but I wasn't sure if they'd ask me to wait until replacements could be lined up, after holidays, etc.  But they said "That is our problem; don't worry about it and take as much time as you feel you need,"  

julie75

Eloise:  I'm so glad your supervisors are supportive.  That is such a huge part of this journey! 

Sandie:  Good information on tamoxifen.  I will be seeing my oncologist next week; I'll get her opinion on tamoxifen and see if she concurs with Dr. Lagios.  I really don't want to take it, due to all the side effects.

Julie

Eloise

Closing the loop on my part of this thread for the benefit of anyone reading this later.

I had a wire localization and excisional biopsy/lumpectomy on 11/17, with local anesthesia and conscious sedation.  No complications so far....the top of my hand where the IV was placed actually looks more bruised than my breast, although I have a pretty big incision (if there's a scar, I intend to refer to it as a souvenir of a duel!). 

My surgeon called me yesterday (roughly 72 working hours after operation) with the path report -- it indicates the first biopsy, the stereotactic core one, removed all the cancer; everything that came out in the excisional biopsy was benign!  So, although I have an oncology consult on Friday and an in-person meeting with the surgeon next week, it looks like no radiation or any other treatment will be recommended.  Boy, I'm sure glad I didn't take the surgeon up on his offer of doing an SNB, "just so we don't need to do two operations".  

Thanks to all --  

CTMOM1234

Congratulations, you got the best outcome possible!!