How many of you had second opinions on your final pathology?

LuvSnow · April 2013

I am 7 weeks out from a bilateral NSS mastectomy. I am 44, have a strong family history of BC (mom at 28, maternal gm in 40s, maternal great aunts (2 of 3) in 50-60s), had a lumpectomy for DCIS/ADH at 23 (in my former non-cancer breast), and had dense breasts.

I was diagnosed in Jan with grade 2 IDC 1 cm with ADH. My breast was already considerably dimpled from this small tumor. Anyway, the core biopsy pulled a significant amount of tissue, but the path from that and the final path were different. Final path shows IDC grade 1, ie tubular, along with a DCIS (.7cm) but oncologist believes that my tumor was not pure tubular, and trusts the biopsy showing grade 2, and is treating it as such. I am ER (5%)/PR (95%) positive...onc says I may get some benefit from Tamoxifen (as I am a very weak ER+), but he says there is no knowing for sure. They took 3 sentinel and 1 axillary node, all showed negative.

Now, the rest of the breast was looked at, as was the left (non-cancer side), but from what my onc says, they only concentrate on the known areas, so it is possible the hospital lab missed something.

Anyway, I have this gut feeling that I need to get a second look at all my slides. I am not a worrier, but generally when I get these feelings they are for a reason. My question to you gals, how many of you asked to have a second opinion/look at your pathology slides? If you did, what was the outcome. Any suggestions as to whom I should have look at them? I was thinking Johns Hopkins.

I appreciate your feedback.

UPDATE: got the second opinion from Johns Hopkins. The IDC was 1cm. They also found DCIS with ADH. It was NOT tubular. It was looked at twice. Final diagnosis IDC Grade 2 with DCIS Grade 2.

Moderators · April 2013

Hi Momof5inva,

While you wait for the ever-helpful advice from the other members here, you may want to check out the main Breastcancer.org site's pages on Getting a Second Opinion for some great advice.

We hope this helps, and best of luck!

--The Mods

Lily55 · April 2013

I got a second opinión and Glad i did there was av70 percent difference in some scores........and hormone status varied too - if deciding on hormone treatment is añ issue for you i would get second opinión....

voraciousreader · April 2013

Since tubular is a "rare" type of IDC, and is usually more ER+ ...AND you are considering endocrine therapy....I would DEFINITELY ask for a pathology review. Johns Hopkins is a GREAT place to have it done. Over on our mucinous carcinoma of the breast thread (another "rare" type of IDC) I ALWAYS tell sisters to get a second pathology review because, as you can see, the pathology report guides the treatment plan. Having a second pathology report is THAT important for us!

LuvSnow · April 2013

Ya, my BS did not seem to think it was a pure tubular (due to the biopsy, my age, how rare it is, and how weakly ER I am) and continues to call it IDC grade 2, and my onc is treating it as an IDC grade 2 (he is of the same opinion as the BS). I just wonder if the hospital lab "missed" anything...and my onc said that they can and do, which was not comforting. I am already on Tamoxifen - if it does not help this cancer maybe it will help another should any cells be floating around or left in my breast skin. I am almost more concerned that there was another cancer that was missed....especially given the fact that both my mom and maternal gm had cancer in both breasts. I know I have read many places that second opinions often reveal addtional findings that were missed...human error I guess. My hospital was a "good" hospital, but definitely not a cancer center. I think I would have more confidence getting a report from an institution that sees breast cancer on a larger scale.

Where do I begin for a second opinion? Do I ask my oncologist to request it? Sorry for all the questions.

voraciousreader · April 2013

go to johns hopkins website....Everything is explained there. Good luck!

voraciousreader · April 2013

http://www.hopkinsmedicine.org/avon_foundation_breast_center/second_opinion.html

LuvSnow · April 2013

I was at their site yesterday, but for a pathology second opinion the only information given an address to forward slides and samples to. I guess I will talk to my oncologist to see if he can request that they be sent.

Cuetang · April 2013

I didn't get a second opinion, but would suggest that you go with your gut feeling in this...I'm a big fan of second opinions! I would think it would be easy for your oncologist to put that request in for you.

cwhappyrn · April 2013

Would not hurt to get a second opinion, especially while you have your slides and they are not too old. I did not get one mainly because It was so obvioulsly cancer, node negative, margins clear 1.6 cm Er+ PR - and weak Her2/NU. My focus was surgery and mammosite radiation as soon as possible. I do worry about undetected micro mets that can occur with small lumps. Option is a PET Scan, however, just get labs occassionally. I don't want radition of PET Scan that is huge, hundreds of times over and x-ray. I already had about 20 low dose CTs with mammosite to check placement 2xs a day pre-treatment. I also work with radiation and have had x-rays and a previous CT in my life. I work in ER where we get scatter from all the portable x-rays. I don't want to be to worried and obssessed with this cause the radiation is known to cause cancer.....and does. But, just slides and the expense seem more reasonable that expense and lots of radiation. I am glad you caught it early and am sorry you had to have a mastectomy. Life is better knowing you are OK! Carol

Cuetang · April 2013

I just got the name of a person at Johns Hopkins that my oncologist contacts for second opinions. PM me if you need that name...

Anonymous · April 2013

momof5, a second opinion really cannot hurt. I am a fan of a third opinion and then side with the majority. Good luck with your decision(s). None of this is easy.

edwards750 · April 2013

Mom - dont know how drs feel about asking them to suggest someone for a second opinion...ego and all. Maybe he is different. I remember when my youngest son was small I took him to this doctor who was checking his bone development. I am small, husband is about average and son was short...now is 5'9"...anyway this doctor measured the bones and predicted he would be maybe 5'-5" or so. I decided to get a second opinion because someone else had seen this same dr and had a similar issue...I called the drs office to get the xrays and this dr got on the phone and asks me if he can help me. I said no the recep was handling it and he proceeds to tell me he would be happy to confer with the dr we decided on and I promptly told him...he is a professional he doesnt need your help. He was ticked and so was I for that matter. He then started telling me he did this and that and I said that was fine but we were getting a second opinion. As I said my son is 5-9. Sorry to ramble but point is for your own piece of mind I would get another opinion and ask around for doctors that other people have used. I found my BS that way. When I was dx I had no clue where to start finding a dr except on my insurance website. Def with bc you should have a BS. Good luck. diane

msphil · April 2013

always good to get a second opinion.msphil(idc, stage2, 3 nodes, L mast chemo and rads and 5 yr on Tamoxifen and (Praise GOD this yr a 19 yr SURVIVOR).

How many of you had second opinions on your final pathology?

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