Recent diagnosis, so many questions

Options
dragonista17
dragonista17 Member Posts: 50
edited June 2015 in Just Diagnosed

I had an excisional biopsy on 5/11 (not steriotactic core biopsy as I have no range of motion in my neck so couldn't manage that). The diagnosis was DCIS, but with close margins. So, does this mean I could still have IDC or something else in that area? The surgeon recommended a wider excisional biopsy to be sure, plus a diagnostic MRI. The MRI (oh my neck!! geez - could they make this any more uncomfortable??) didn't show cancer elsewhere in the breast, although it can't show the area right around the incision. It took the surgeon a full week to get back to me with the info. Yes, there was a holiday and weekend thrown in there, but a week is just not acceptable.

Anyway, I know the recommendations for measuring a clear margin has changed, but I don't know to what. Plus I think that different places have different standards, so how confusing is that? It seems that each time I learn something, I have more and more questions.

Tomorrow I'm going for another opinion with a surgeon at MSK in NYC. Also will get opinions from their pathologists and radiologists on everything. Anyone know if they run extra tests on the biopsy? Do I have to request genetic testing for who-knows-what? See what I mean? Questions! I hope to have them mostly all answered after tomorrow, but if anyone has a suggestion as to what I should even be asking, I'd be grateful. Been reading through the forums and have found sooo much helpful information and such supportive people here. I just want to be as prepared as possible for my appointment tomorrow. I think it will help me be calmer.

Thanks so much for any and all info.

· Share on FacebookShare on Twitter

Comments

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Well you are certainly going to the right place. When you are at a comprehensive cancer center, it is easier to sit back and "surrender to the process", as I have to continually repeat to myself. There are teams of people discussing your case, debating, challenging each other's opinions. When the doctor says to you: "The best course of action is....." you can know this is a consensus. That being said, I like to know everything before I go to an appointment too.

    They can run extra tests on the biopsy, and they might request the slides. But they do second opinions all the time, and will ask you for any data they feel they need. The fact that you have close margins could mean there is no other cancer outside the tissue they took, but it is just closer than they would have liked. So they want to do a wider excision, which is sensible but your second opinion will either concur or tell you another course of action.

    They usually only give you genetic testing if you have close family with cancer. You can talk to any of your doctors about a referral to a genetic counselor, who can go over that with you.

    I think you're doing the right thing getting a second opinion from a comprehensive cancer center. The waiting truly is the hard part, but you will be in very good hands. :)

    · Share on FacebookShare on Twitter
  • dragonista17
    dragonista17 Member Posts: 50
    edited June 2015

    Wow, thanks for responding so quickly!

    Your explanation of how things work at a cancer center is really helping to calm me. It's good to know that a team is actually looking at my situation. I have other underlying medical issues, so I really need their experience with everything. I'd also really, really like to avoid another surgical biopsy, but I'm probably living in dreamland here. Wondering if they biopsy any nodes when they go back for this kind of thing? If the surgeon tomorrow also recommends another procedure, I'd prefer to have it done at Sloane, even though getting there, and then the follow-up, is a huge pain. So then I'd see one of their medical oncologists as well.

    They did request my actual slides and imaging studies for the past 3 years, which I had sent over last week. That's why I was wondering if the pathologists would be doing additional tests, and if so, might they already have been done. The original pathologist tested for estrogen and progesterone receptivity, positive on both counts. Have read about other tests, but apparently none of them were done - HER, or K-something or other. It seems these things help determine a more targeted treatment. My head is spinning! I will bring up the issues of genetic testing.

    Knowing I will be seen at Sloane has helped to get me through this past week with relative sanity, but.. I go to a Cancer Center tomorrow! So, I'm officially cuckoo again. I never liked rollercoasters, and I'm sooo not liking this one:(


    · Share on FacebookShare on Twitter

Categories