DCIS and so confused

Options
Iggy
Iggy Member Posts: 11
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Diagnosed with DCIS Feb 27th after a biopsy. Told very small..no problem... wasn't worried at all. Decided to have lumpectomy knowing all would be good. My DCIS was very small, contained and I was sure my margins would be clear and if not, I'd have a little more cut out and I'd be good as new. Well, got the pathology report back on Wed. and met with my BS. News, not so good. One margin-clear, 2nd margin-low grade, 3rd margin-low grade, 4th margin-fibroadipose tissue but clear, 5th margin-low grade, 6th margin-clear.. Synopsis-DCIS grade, low and intermediate; Necrosis-absent; histopathologic type-intraductal. Because of the 3 separate quatrants showing DCIS, the BS doesn't feel another lumpectomy would be helpful (I'm a B cup). My options-do nothing or mastectomy w/wo reconstruction. Love my BS. He wants me to talk to an oncology radiologist to confirm his thoughts. But if she thinks it would be worthwhile, he said he'd definitely do another lumpectomy if I wanted it. Also wants me to talk to a PS. I see the radiologist on Mon. and PS on Wed. He told me not to rush into anything. "Sleep on in, research it, talk to professionals-I want you to know as much as I do". So now, I'm waiting and reading all these forum discussions and I'm more confused than ever. Should I get another pathology opinion? Should I go on the vacation my hubbie and I have planned for May-June. I have another big vacation planned in October - 2 week cruise in Europe for hubbies 70th. I feel like I have a time bomb in my breast and am worried that I will stress over this which in itself isn't good for me.  Guess I just needed to write this all down...

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2012

    Ingie, you've found a good place to write everything down, and get some support from others who've been through this too. Welcome to the community.

    Until others post with their own experiences, there is a helpful section on the main Breastcancer.org site: DCIS: Ductal Carcinoma in Situ. Follow the links from that page to learn more about some of the factors you may want to consider as you face the decisions ahead.

    The Mods

    .

    · Share on FacebookShare on Twitter
  • CLC
    CLC Member Posts: 1,531
    edited April 2012

    Hi, Ingie.  I am sorry your situation got more complicated.  I am glad that you are still in the realm of DCIS.  From what I understand, a dx of dcis means you have time to think.  I didn't need extra time and I got to my mx within three weeks of my dx.  But...if your docs have given you time to think, it is yours to take, safely.

    I can completely understand wanting to decide and move forward quickly, though.  I had a very hard time waiting my little three weeks.  I wanted it done and move on.  And, of course, there is always a chance that if they take more tissue, the pathology report will change your dx...  It is not likely, but does happen...and has happened to women on bco.  The fact that it is a mixture of low and intermediate grade raises the risks a little bit too.

    I would ask your doctors how much time you can comfortably take...and then decide how much time you can emotionally wait...then decide about your vacation.

    Since it is dcis, seems chances are good that you will be good to go for your cruise...:)

    Whatever you decide, be sure to give yourself room to feel all of the feelings and take time to process everything you are going through. If there is something I would have done differently it would have been to take a couple of more days off BEFORE surgery (I took two, got a massage, spent some time with dh and kids, spent some time crying). Then, too, I might not have returned to work quite as quickly (I returned after 3.5 weeks).

    Wishing you all the best as you move through this very difficult phase of bc...(the deciding and planning)...

    Claire

    · Share on FacebookShare on Twitter
  • Mooleen
    Mooleen Member Posts: 185
    edited April 2012

    I was diagnosed with DCIS level 3, and after a lumpectomy without clear margins and a second excision that found DCIS level 2, I had a UMX with tissue expander reconstruction on 2/23. Even though my final path report did not show any signs of cancer, and now that I am 8 weeks out, I don't have any regrets because I don't have to worry about the what ifs. Also I don't need any further treatment, I.e., radiation. That was a given with my original diagnosis. I know it is a lot to take in and I am still learning stuff from this board every day. Truly the hardest part is waiting for the surgery date. Get some mild tranquilizers and maybe some sleeping pills from your Dr and take them when you feel anxious. It will help. Ultimately it is your decision. Good luck.

    · Share on FacebookShare on Twitter
  • Mooleen
    Mooleen Member Posts: 185
    edited April 2012

    Also Ingie, taking your October trip shouldn't be a problem. I am taking a trip to Florida on May 4.

    · Share on FacebookShare on Twitter
  • CLC
    CLC Member Posts: 1,531
    edited April 2012

    I had a similar experience.  I had dcis in only one spot.  I opted for mx because I did not want radiation.  My final pathology report indicated that all of the dcis had actually been removed in the original biopsy (there was none remaining prior to the mx).  I have no regrets at all.  I know that in my case, things were hopping in my breast.  They kept finding calcifications and then adh (like precancer cells).  We were removing stuff, just to have more bubble up.  No regrets at all.  For me, I opted for no reconstruction and am very happy with the results...

    Claire

    · Share on FacebookShare on Twitter
  • Beesie
    Beesie Member Posts: 12,240
    edited April 2012

    Ingie, have you had an MRI?  I had two areas of DCIS that initially appeared to be in the same quadrant of my breast.  But after my excisional biopsy (same as a lumpectomy) removed pretty much all of that quadrant (I was a small B cup too), and ended up with no clean margins, the recommendation was that I have a mastectomy.  I went to another surgeon for a 2nd opinion; he agreed with the mastectomy recommendation although he was willing to try a re-excision to see if we could get clear margins.  Before that, however, he sent me for an MRI.  The MRI showed "stuff" throughout my breast.  While my surgeon was clear in telling me that there was no way that we could know for sure that it was all DCIS, we both figured that it was.  So I agreed to the mastectomy.  It turns out that it was all DCIS - my breast was full of it.  However, had the MRI showed only remnants of cancer in the area of the surgery, I would have attempted the lumpectomy.

    So if you haven't had one done yet, I'd recommend an MRI since it can really help with your decision.  

    · Share on FacebookShare on Twitter
  • Mooleen
    Mooleen Member Posts: 185
    edited April 2012

    After the original lumpectomy and biopsy, I too had a MRI. It did show an area of suspicion that turned out to be nothing, but didn't show the grade 2 DCIS that turned up in the second excision path report. Your dr. Will probably want an MRI.

    · Share on FacebookShare on Twitter
  • Iggy
    Iggy Member Posts: 11
    edited April 2012

    Thanks for all the good info. Yes, I've had an MRI but it was prior to my lumpectomy.. MRI didn't really show too much.. I have very dense breasts..very hard to see anything..have had issues all my life.. Had a lump (benign) in right breast 40 years ago (I'm 63). I'm assuming if the BS does another lumpectomy it would probably be quite a bit of my breast and he's not sure that I wouldn't still have bad margins. That's the reason for talking to a PS for possible mastectomy. I'm also thinking of getting a second opinion from another pathologist to confirm my diagnosis.

    · Share on FacebookShare on Twitter
  • Mooleen
    Mooleen Member Posts: 185
    edited April 2012

    Isigovich, I am 60 and your story could be mine. I too have very dense breasts. This in fact was my third surgical biopsy on my left breast. I remember my gyn telling me when I was child bearing years that I had fibrocystic breasts. Hang I there. I will be watching the boards for your updates.

    · Share on FacebookShare on Twitter
  • Iggy
    Iggy Member Posts: 11
    edited May 2012

    Well after much discussion and thought and the good advice on this board, I've decided to go ahead with the mx on one breast with reconstruction...doc says I don't need to do a bi... Scheduled for June 12th which is a little bit of a time away but I've decided to take my trip with hubby next Tues and enjoy a month with family and friends and then face the reality of my surgery. Hopefully, the timing will work in my favor and I'll be able to go on the cruise to Europe in Oct for hubby's 70th... one step at a time... still scared but moving forward... the best part is my daughter will come the week after the surgery and I'll be able to hug and kiss my sweet grandchildren...

    · Share on FacebookShare on Twitter
  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    Congratulations on making your decision and scheduling your surgery.  I know you will be on that cruise and you will be celebrating more than your husband's birthday!  What is on your to-do list between now and June 12? 

    · Share on FacebookShare on Twitter
  • Iggy
    Iggy Member Posts: 11
    edited May 2012

    I leave on Tues. to see my grandchildren and daughter. Then on to Mami to visit friends, Key West for 4 days, St. Maarten with friends for a week, back to Tampa to visit my brother and finally to San Diego to babysit my grandchildren while my daughter flies to New York for a few days... A very busy schedule but am so looking forward to it all. We've had it planned for 6 months...then I can face the next few months of uncertainty..

    · Share on FacebookShare on Twitter

Categories