wondered....

[paigern10]

i have recently been diagnosed with DCIS....diagnosis obtained after having an MRI with a vacuum assisted biopsy done at the same time....so i had 2 options presented to me...partial or total mastectomy....i chose a partial to be followed by 5 days of mammosite radiation if the margins turned out good; when my results came back i was told that there was only LCIS in tissue the MD removed....lots of medical personnel met, and discussed my case; when i went back for my recheck appt., i was told that the MD's office had received an addendum concerning the 1st biopsy stating that the 1st biopsy only contained LCIS instead of DCIS like i had been told....they are recommending a followup MRI in 6 mos.....but i do not have peace of mind about it, and am thinking of getting a 2nd opinion...what do you think? do you think it is wise to wait 6 mos. in case there might be some DCIS still in my breast? the MD removed a 6cm X 6cm X 2.2cm pc. of tissue and claims that he got the correct site.....thanks

[mamaboulet]

I'm here a lot and most of the advice and info I see traded on this site is straightforward and reasonable, with support and "see your doctor" being the dominant posting. It is a community site, not a doctor forum, so the info may not always be spot on. I thought the woman who scared everybody with out of context statistics about biopsy needle seeding was a bit insensitive, but she was scared, and I was more worried about her not getting a biopsy.
Certainly when I give advice, I say that I am a lay person and have simply researched the material or been through a procedure myself, and I follow up the advice or support with "see your doctor."
Anyway, I think this forum works pretty well in terms of support and solid information, and is certainly less dysfunctional than some of the community forums on medhelp.
And the doctors pop in regularly, which is really nice and helps cover our behinds if one of us says something stupid.

[Grey56]

Stay strong in YOUR fight against breast cancer, and thanks for all your advice and comments.  You obviously had alot worth sharing!

[Mukenhimer]

I apologize if you were offended, it wasn't intended for you and, yes, my choice of words was a bit harsh.  That said, I won't apologize for the intent behind it.  I've seen downright dangerous advice and information traded on this site and I was getting upset with seeing the same names over and over.  I'll be deleting my profile, no need to report this or send another "warning."

[BJSaws]

     To get a different pathologist to look at your sample, you do not have to get a different doctor.  Just tell your current doctor that you would feel more comfortable if you could have a second opinion from a different pathologist.  The samples should be in possession of whoever did the initial pathology report.  That office (hospital, clinic) merely sends the samples to another lab for the second opinion. After the mix-up with my diagnosis, when my husband got cancer we automatically requested a second opinion on the pathology.
     In my particular case, the diagnosis of medullary carcinoma (the second one) was kind of mixed.  Medullary carcinoma is less aggressive than adenocarcinoma and has less likelihood of recurring, but it is also triple negative meaning I did not have access to herceptin or any of the hormone-related treatments.  I did have chemo.
     I know how you feel.  Once diagnosed with cancer, you will always have questions.  Did they make the right diagnosis?  Did they get all of the cancer?  Are there cancer cells floating around just waiting to settle and grow somewhere else?  It is an arduous journey. Knowing that doctors are fallible and just humans like you and me, we question whether they have made the right decisions in our particular case.   I am almost five years out of surgery and so far, everything has gone well.  I don't think of it every day like I did for the first few years, but I still think of it frequently.
     If for no other reason than peace of mind, ask your doctor to have another pathologist look at your samples and demand another MRI.  Tell your doctor of your concerns and he/she should be willing to do whatever it takes to reassure you.  Best wishes on your recovery.

[Lois428]

I definitely understand your thoughts about a second opinion but my thoughts go to the LCIS.  After having been diagnosed myself with LCIS and looking at tons of research on it I am leaning towards a prophylatic bilateral mastectomy.  There are a couple of things I have learned about LCIS 1) if the cells are in one lobule the odds are that they are in other lobules as well 2) the odds of having LCIS in both breasts is pretty high 3) there is no way to diagnose LCIS without a biopsy.  From what I have read actually if you had a diagnosis of LCIS you had a darn good pathologist reading the slides.  LCIS is not seen on mammograms, breast MRI's or ultrasounds- it's only found in tissue samples. 4) Once you have been diagnosed with LCIS your odds of getting breast cancer go up 1% a year.  However, I will say that a diagnosis of LCIS doesn't necessarily mean you will get breast cancer but you probably should be on some type of medication to remove estrogen out of your system if it is estrogen positive (this was the recommendation to me from MD Anderson in Houston).  I don't know if all LCIS is estrogen positive.  At least DCIS shows up on biopsys and breast MRI's (MRI's shows an abnormal area- the biopsy will show the DCIS). You can have LCIS and nothing shows up on anything. This is all just food for thought and maybe a little more discussion, research and questions to doctors. Keep us posted on what's going on with you.  I would be interested to hear what happens.
Lois

[healingwell62]

I would like to remind all of our members that we are here to help each other and be supportive.  We all come from different perspectives and experiences with breast cancer, and we may have different opinions about how we'd approach a situation.  That is the beauty of this forum -- drawing from everyone's experiences.  I feel strongly about each of us having respect for each other's input and not attacking or questioning an individual's character because of his or her thoughts.  Please keep your comments and efforts directed toward helping and supporting each member who comes here with questions or seeking help and support.  Thanks to you all.

Chris
Healingwell62
Breast Cancer Community Coordinator

[paigern10]

was your first diagnosis worse than the 2nd? i guess what worries me is i just keep thinking that the first diagnosis of DCIS could still be in my breast.....! could another pathologist still look at the first sample they took? do you know? i don't have a clue how to go about that; would i need to go see a different doctor as well to have another pathologist read the samples? thanks so much for that input~!!

[zouzi]

I was very offended of your comment about Japdip.This lady is always so kind and caring for all of us and her advice is excellent.Please,it would be nice to apologize because she deserves all our thanks for  the wonderful work she does for this community.God bless you Japdip.

[BJSaws]

I had a similar experience.  My biopsy identified my tumor as adenocarcinoma, but after my mastectomy, my tumor was identified as medullary carcinoma.  It made no difference in treatment, but it did make a difference in prognosis.  When I asked the medical oncologist how this happened and which pathology report I should believe, she said I should trust the final pathology report from the mastectomy.  She said that a biopsy takes a very tiny sample and the final report is dealing with the entire tumor.  This makes the final pathology report much more accurate and reliable.
It wouldn't hurt to have another pathologist look at the sample, but I think you can have confidence that the final report is the most accurate.

[paigern10]

i agree that i am glad i had the surgery; i just keep thinking in the back of my mind,"hope the DCIS that the 1st biopsy claimed i had isn't still in there", ....trying to be thankful and content with new diagnosis, but hard after being told the other....thanks!

[madgeOwens]

and pardon me but Japdip helps many people in here and I think it was very rude what this person said of her, shame on you mukenhimer, we all have our opinions you can take them or not. These people have enough to deal with without adding more **** to the equasion.

[madgeOwens]

I think its good that you have had the lumpectomy/partial mastectomy.....atleast the suspicious tissue is out of there. If I were you I would demand to have all pathology reports given to you and then at this point if you wish to have another physician review this report and perhaps follow up with other tests that may make you feel more secure. I am glad it was pre cancer thats wonderful. Celebrate that atleast.

[paigern10]

i think i am going to go see someone else; i would just like to be able to see on an MRI that DCIS/LCIS...whatever.....is GONE...! who is in the picture with you?????i love it!

[paigern10]

oh, and radiation was never done, because they didn't see any DCIS in path report after surgery and path report was ammended to LCIS....

[paigern10]

yes, i was thinking of letting another doctor look at my records and all.....yes, that was a good size he removed...the thing is...the biopsy showed DCIS, and the tissue he removed showed LCIS.....totally different....and then the diagnosis made from the 1st biopsy was ammended after looking at it again....stating that i never had DCIS in the first place....i would just like to see in black and white now that it is all gone...my doctor's office is checking but don't know if my ins. will pay for a repeat MRI now; i am just having trouble having peace of mind about it because of change in diagnosis after my surgery....thanks!

[japdip]

I'm not sure what type of second opinion you might be thinking about obtaining. At this point having another Physician (?type) go over your films and reports would be the only thing I can think of. Is this what you have in mind ?? That's quite a sizeable amount of tissue if your measurments are correct to be removed and not get the entire area. Clean margins were obtained according to the Path report, right ?? The 6 month follow-up sounds reasonable to me. You mentioned the mammosite rads. ... was that done as well ??  Regards ...

[Mukenhimer]

There are no downsides to getting a 2nd opinion!!!  I can tell you that the final surgical path report is the gold standard of diagnostic certainty and that the biopsy only takes a portion of the mass.  My biopsy said my tumor was a low grade cancer where my surgical path report said it was a grade II.  I would put more faith in the final surgical path report than the biopsy but there is no harm in getting a 2nd opinion, your MD may even thank you for it!

Take care!