DCIS

ccd
ccd Member Posts: 8
edited March 2014 in Breast Cancer #1
I have just been diagnosised with DCIS. I have a meeting with my surgeon on Monday...does anyone have advice about questions to ask and decisions I will have to make? I am thinking I would also like to see an oncologist before making any final decisions...does this make sense? Any advice would be appreciated!

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    So sorry........
    CCD........so sorry about your diagnosis..but this site is wonderful....I have just finished ALL TREATMENTS, 3 weeks ago.....it's a long journey,mine was 8 months, but you will get through it....it does take a long time.....and the waiting, waiting, is awful!

    Starting with the surgeon is where you want to be....Then it's lumpectomy vs mastectomy...my surgeon and oncologist stated repeatedly that the survival rate with a mastectomy is no better than lumpectomy,because it is impossible to remove ALL BREAST TISSUE..... but not all women are candidates for a lumpectomy, due to breast size..bigger is better in this case! But I wasn't and I did fine. Ask about sentinel node biopsy, which they will do.....how many will they take, etc....With DCIS...ductual carcinoma insitu, it is a contained cancer that has not broken through the wall of the tumor....Mine was not,it was invasive, but I had clean margins and clean lymph nodes, they only took 3...some surgeons take more...but usually if the cancer has spread it will be evident in the first three....then they take more if that is found.

    The medical oncologist will come into play AFTER your surgery and pathology results......what they find determines the treatment to follow.....the medical oncologist will inform you of a treatment plan.....He will lay out all the options and statistics.....I wasn't expecting to have chemo but once he told me the odds of with and without chemo,the odds of the cancer returning in the breast or elsewhere in the body within 10 years, it was a no brainer for me!!! I wanted EVERYTHING they could throw at this beast!! Mine included 4 chemo treatments, starting less than a month after surgery....then I had 3 weeks before I started 32 radiation treatments, 5 days a week with the last 7 being
    boosters.....

    Also after my surgery, and before starting chemo, I had ALL THE BODY SCANS..Bone scan, CT SCAN, breast MRI, etc....this also played a part in the oncologist's recommendations for treatment. ALl my scans were clean, thankfully.

    There is so much to think about, your brain goes on overload! Try ALWAYS to take someone with you to each and EVERY appointment....because after a while, your brain simply shuts down from to much information, at least mine did!

    As I said, this is a long process. IT seems almost never ending......I know when I first started this 8 months ago and they told me I would be finished all treatment by THANKSGIVING, I thought that was an eternity away.......and here we are, Thanksgiving has come and gone..I never would have believed it, at the time!

    I hope some of this has been helpful to you and I wish you the best.......IF I can help in any way, please don't hestitate to send an email.....
    Peace be with you..
    Nancy
  • ccd
    ccd Member Posts: 8
    #3
    MAJW said:

    So sorry........
    CCD........so sorry about your diagnosis..but this site is wonderful....I have just finished ALL TREATMENTS, 3 weeks ago.....it's a long journey,mine was 8 months, but you will get through it....it does take a long time.....and the waiting, waiting, is awful!

    Starting with the surgeon is where you want to be....Then it's lumpectomy vs mastectomy...my surgeon and oncologist stated repeatedly that the survival rate with a mastectomy is no better than lumpectomy,because it is impossible to remove ALL BREAST TISSUE..... but not all women are candidates for a lumpectomy, due to breast size..bigger is better in this case! But I wasn't and I did fine. Ask about sentinel node biopsy, which they will do.....how many will they take, etc....With DCIS...ductual carcinoma insitu, it is a contained cancer that has not broken through the wall of the tumor....Mine was not,it was invasive, but I had clean margins and clean lymph nodes, they only took 3...some surgeons take more...but usually if the cancer has spread it will be evident in the first three....then they take more if that is found.

    The medical oncologist will come into play AFTER your surgery and pathology results......what they find determines the treatment to follow.....the medical oncologist will inform you of a treatment plan.....He will lay out all the options and statistics.....I wasn't expecting to have chemo but once he told me the odds of with and without chemo,the odds of the cancer returning in the breast or elsewhere in the body within 10 years, it was a no brainer for me!!! I wanted EVERYTHING they could throw at this beast!! Mine included 4 chemo treatments, starting less than a month after surgery....then I had 3 weeks before I started 32 radiation treatments, 5 days a week with the last 7 being
    boosters.....

    Also after my surgery, and before starting chemo, I had ALL THE BODY SCANS..Bone scan, CT SCAN, breast MRI, etc....this also played a part in the oncologist's recommendations for treatment. ALl my scans were clean, thankfully.

    There is so much to think about, your brain goes on overload! Try ALWAYS to take someone with you to each and EVERY appointment....because after a while, your brain simply shuts down from to much information, at least mine did!

    As I said, this is a long process. IT seems almost never ending......I know when I first started this 8 months ago and they told me I would be finished all treatment by THANKSGIVING, I thought that was an eternity away.......and here we are, Thanksgiving has come and gone..I never would have believed it, at the time!

    I hope some of this has been helpful to you and I wish you the best.......IF I can help in any way, please don't hestitate to send an email.....
    Peace be with you..
    Nancy

    Thanks you SO much for all
    Thanks you SO much for all of your good advice and encouragement! I will keep you posted!
    Cathy
  • crselby
    crselby Member Posts: 441 Member
    #4
    ccd said:

    Thanks you SO much for all
    Thanks you SO much for all of your good advice and encouragement! I will keep you posted!
    Cathy

    DCIS
    Hi Cathy,
    I was on your path back in June: DCIS diagnosis, getting ready to see a surgeon.

    Getting your treatment plan will take time. Sometimes you will need a few more tests, scans, whatever, for them to have all the info they need. The waiting is the hardest thing, if you're like me. I wanted ANSWERS and I wanted them NOW! But good doctors can't do that always.

    So, next, find support people to talk to, those who can help you be calm, be courageous. I had someone to email and phone who was 2 months farther down the path than I and she was the right and perfect person. My husband tried, but she UNDERSTOOD. So when she said, "You are NOT crazy because you can't sleep, you are not awful because you have panic attacks and can't focus on daily stuff, you will feel more normal when you finally have a treatment plan,... " , etc. it really helped me.

    If you are a person who wants to be informed about your condition and you want to participate in your treatment decisions, read on...

    Next, get a binder and put pocket tab pages in it. I got this advice from a breast cancer book by John Link (walking from the book shelf to here I have forgotten the title, arghh). Get that book if you can. He tells you to make a section for these things: Directory (names, addresses, phones of docs, labs, other offices you'll visit), Consultation notes (I kept a running list of questions here, too, to ask of whichever doc I went to next), Lab Reports & Test results, Calendar (so you can keep dates of past procedures straight and can post future appointments on it), Insurance and Financial information, Journal (for spiritual insights or for affirmations you want to remember), and (my addition to Mr. Link's list) Care Instructions. Carrying this notebook to each appointment and procedure saved me lots and lots of time and frustration when my reports hadn't gotten from one doctor to another or lab reports hadn't shown up where and when they should have. I know those things shouldn't happen but they did, from the morning I got my diagnosis (it went to the wrong General Practitioner with the same last name) until today! So frustrating.

    Fourth, find out these things about your tumor: size, histologic grade, nuclear grade, estrogen and progesterone receptor indicators (positive and/or negative?), and whether the DCIS is multifocal or multicentric or neither. When your surgeon answers these questions, he or she should also be explaining what these things mean.

    I wish you a calming peace to settle over you as you face this bump in the road. DCIS is highly curable. CURABLE! I'm sorry you are joining your sisters in pink. It's not a club I want to be in, either, but here we are and we must make the best of it.

    Remember: Working on finding cures lines the pockets of big Pharmecutical companies even more. Let's participate in studies to find the CAUSES, too!
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #5
    crselby said:

    DCIS
    Hi Cathy,
    I was on your path back in June: DCIS diagnosis, getting ready to see a surgeon.

    Getting your treatment plan will take time. Sometimes you will need a few more tests, scans, whatever, for them to have all the info they need. The waiting is the hardest thing, if you're like me. I wanted ANSWERS and I wanted them NOW! But good doctors can't do that always.

    So, next, find support people to talk to, those who can help you be calm, be courageous. I had someone to email and phone who was 2 months farther down the path than I and she was the right and perfect person. My husband tried, but she UNDERSTOOD. So when she said, "You are NOT crazy because you can't sleep, you are not awful because you have panic attacks and can't focus on daily stuff, you will feel more normal when you finally have a treatment plan,... " , etc. it really helped me.

    If you are a person who wants to be informed about your condition and you want to participate in your treatment decisions, read on...

    Next, get a binder and put pocket tab pages in it. I got this advice from a breast cancer book by John Link (walking from the book shelf to here I have forgotten the title, arghh). Get that book if you can. He tells you to make a section for these things: Directory (names, addresses, phones of docs, labs, other offices you'll visit), Consultation notes (I kept a running list of questions here, too, to ask of whichever doc I went to next), Lab Reports & Test results, Calendar (so you can keep dates of past procedures straight and can post future appointments on it), Insurance and Financial information, Journal (for spiritual insights or for affirmations you want to remember), and (my addition to Mr. Link's list) Care Instructions. Carrying this notebook to each appointment and procedure saved me lots and lots of time and frustration when my reports hadn't gotten from one doctor to another or lab reports hadn't shown up where and when they should have. I know those things shouldn't happen but they did, from the morning I got my diagnosis (it went to the wrong General Practitioner with the same last name) until today! So frustrating.

    Fourth, find out these things about your tumor: size, histologic grade, nuclear grade, estrogen and progesterone receptor indicators (positive and/or negative?), and whether the DCIS is multifocal or multicentric or neither. When your surgeon answers these questions, he or she should also be explaining what these things mean.

    I wish you a calming peace to settle over you as you face this bump in the road. DCIS is highly curable. CURABLE! I'm sorry you are joining your sisters in pink. It's not a club I want to be in, either, but here we are and we must make the best of it.

    Remember: Working on finding cures lines the pockets of big Pharmecutical companies even more. Let's participate in studies to find the CAUSES, too!

    Hi! What crselby wrote is
    Hi! What crselby wrote is good information. I made sure that I wrote my questions down. I got some from this site and from the Susan B. Komen site. They both have questions to ask and explain a lot to you. And, always take someone with you to the doctor's office. It is too hard for you to hear and comprehend it all. My husband and I even took a tape recorder as well. We met with my oncologist and my plastic surgeon on the same day. I met my whole team actually which was really nice. My oncologist went over what my treatment would be, pending the surgery and path report. I want to wish you good luck!

    Debby
  • Sunrae
    Sunrae Member Posts: 808
    #6
    DebbyM said:

    Hi! What crselby wrote is
    Hi! What crselby wrote is good information. I made sure that I wrote my questions down. I got some from this site and from the Susan B. Komen site. They both have questions to ask and explain a lot to you. And, always take someone with you to the doctor's office. It is too hard for you to hear and comprehend it all. My husband and I even took a tape recorder as well. We met with my oncologist and my plastic surgeon on the same day. I met my whole team actually which was really nice. My oncologist went over what my treatment would be, pending the surgery and path report. I want to wish you good luck!

    Debby

    Just wanted to welcome you
    Just wanted to welcome you here to this site that has answered a lot of questions for me. You have already gotten some good advice. I was so glad I found a surgeon and onc that ran many tests on me and let me know as much as I could about this beast. I was sick at heart when I was first dxed but the more I found out the more I'm determined to beat bc and our sisters here have convinced its all doable. Want to send you good wishes on your coming procedures and keep us posted, please.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #7
    Sunrae said:

    Just wanted to welcome you
    Just wanted to welcome you here to this site that has answered a lot of questions for me. You have already gotten some good advice. I was so glad I found a surgeon and onc that ran many tests on me and let me know as much as I could about this beast. I was sick at heart when I was first dxed but the more I found out the more I'm determined to beat bc and our sisters here have convinced its all doable. Want to send you good wishes on your coming procedures and keep us posted, please.

    I want to say how sorry I am
    I want to say how sorry I am that you have bc. I wish you the best of luck. You have already been given some good advice. Let us know how you do and keep us updated.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #8
    me, too
    I was diagnosed with DCIS in January, had a lumpectomy, 33 rads treatments and then tamoxifen until I got blood clots from it this month. Your surgeon is where you start, mine was pretty definite that lumpectomy was the way to go but it depends on the doctor, size and placement of the tumor and size of breast. Chemo was never discussed and she took no nodes. I know that other doctors do different things so you may hear something different. And remember that everyone on these boards are different, different diagnoses, different parts of the country.

    Good luck--you've gotten a lot of good advice already!

    Maureen
  • lynn1950
    lynn1950 Member Posts: 2,570
    #9
    Susan B. Komen has excellent
    Susan B. Komen has excellent pamphlets that you can view and print from your computer. They are formatted so that they include the questions you need to ask and then there are spaces for you to write your notes about the answers.

    At this link: http://ww5.komen.org/uploadedFiles/Content_Binaries/treatmentchoices.pdf ....you will find the pamphlet for treatment choices. It has the questions to ask regarding different treatment options, breast reconstruction and clinical trials.

    This is the link for the Before Breast Surgery pamphlet: http://ww5.komen.org/uploadedFiles/Content_Binaries/beforebreastsurgery.pdf It has the questions to ask pertaining to the surgery (including hospital stay and length), as well as questions pertaining to reconstruction, recovery and post-surgery restrictions.

    Just paste these links into your browser, and voila! you will be there.

    There are fourteen "Questions to Ask" cards in all covering all aspects of breast cancer. My breast care nurse gave me the set right after I was diagnosed, and they were really helpful. For the introduction page and to see all the cards, go to http://ww5.komen.org/BreastCancer/QuestionstoAsktheDoctorPDFDownloads.html .

    Hope this helps.

    xoxoxoxo Lynn
  • marilyndbk
    marilyndbk Member Posts: 238 Member
    #10
    I am so sorry this has
    I am so sorry this has happened to you. I used to wonder why I was chosen to have DCIS, not once but recurrance this year. Now I consider myself lucky to have been chosen to survive. It can be a long and hard journey. You have already been given excellent advice. This board has been an incredible source of strength and support. You are doing the right thing by trying to find out as much as you can before making decisions. You will be given so much information it will seem impossible to take it all in. Take good care of yourself. Marilyn

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