?s - 8-28-08 DCIS, 37, 2 little kids, Dr. reco's mastectomy

smrsievequeen
smrsievequeen Member Posts: 3
edited March 2014 in Breast Cancer #1
Found a big lump in march '08 - thought it was plugged milk duct having just finished nursing my son to 1 year. Mam's showed lots of micro calcifications and they had a hard time getting good pictures. We did an ultrasound and they said it didn't look like cancer. There was a lot of discussion that since it hurt it wasn't likely cancer. The radiologist referred me to a surgeon for a consultation. I made the decision then to follow it vs. my menstral cycle to see if pain, perceived size, etc varied with my cycle - it seemed to. In month 4 I started to have a discharge from the nipple for a couple of days. I thought this was a good thing (milk duct release, body healing. In month 5 at the same part of the cylce I got the discharge again but it was bloody. Alarming! Round 2 of mam's and ultrasound freaked them out. There was a significant increase in microcalcifications and abnormal reads on the mass. We did core biopsy in the office right then. The breast surgeon called the next night with the news that it was DCIS, Stage 0. The treatment being recommended is mastectomy and removal of the sentinal nodes on the basis tha 1/4 of the breast would need to be removed if lumpectomy. I have an MRI scheduled to get better images and I have had blood taken for the genetic testing for BRAC1 and BRAC2 - for more information to make better decisions. I also asked for a second opinion from a pathologist vs a surgeon (don't have yet). I have not seen an oncologist. I have seen a plastic surgeon and plan to do breast reconstruction. Immediate reconstruction is not such an accurate term - there is nothing immediate about it when you get inflators and then go back again for implants...I think I will skip the nipple reconstruction. It sounds like if the mastectomy gives sufficient margins and the lymph nodes are clear there won't be any radiation or chemo. but I will likely be on Tamoxofin since the cells are both estrogen and progesterone receptive. - - Does the treatment plan sound right? Should I be seeing an oncologist? Is there something else I should be doing? I think the microcalcifications and if there is a mutation in BRAC1 or BRAC2 I will have them take the other side at the same time....thoughts? what else should I be asking?

Comments

  • zahalene
    zahalene Member Posts: 670
    #2
    Hello queen
    It sounds as if you are on top of everything and have your ducks in a row. But decisions still have to be made as there is no one 'right' way to go about this.
    I had 2 radical mastectomies at different times (both were cancerous and I had to do the treatment thing twice), with no recon, but had chemo, rads, tamoxifen. I was 38 when first dx with 2 young kids - just finished nursing a baby. I am now 60 and living a normal life for anyone my age in spite of all that. This is just to say that whatever decisions you make in the next few weeks, although they will impact your future, you will know that you did the best you could with the information and intestinal fortitude you possessed, and there will be no reason to look back and second-guess.
    And that is really all any of us can do.
    Good luck and God bless.
  • NorcalJ
    NorcalJ Member Posts: 187
    #3
    Onco type DX
    Have you heard about the Onco type DX test? After the surgery, they test the tumor, if it's less than 2 cm, and the results help them decide if you need chemo or not. The web site is very understandable and can help you with, at least, some of the decisions you're facing. Most insurances pay for it, but it can't hurt to check with yours. Mine would pay, and had never heard of it before I brought it up, but my tumor was 9cm, so not a candidate.

    Good luck, and keep us posted.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #4
    Wow
    I wish I had had it so together when I found out. One thing I would recommend only because it was worth it for me is to have your p450 2D6 gene checked to be sure you will metabolize the Tamoxifen. No point in taking it for years and upping your risk for other cancers unless it is actually working for you. I found out I am not fully metabolizing the Tam. It was good to know.

    I second the motion on the Oncotype DX testing. The more information you have of your particular cancer the better. You'll be able to make more informed decisions.

    Best of luck to you
    jan
  • cabbott
    cabbott Member Posts: 1,039 Member
    #5
    Microcalcifications
    I'm sorry you are having to go through this right now, but I agree that you and your doctors are on the right track. Microcalcifications on a mammogram were all that tipped off my doctors that I had a problem. Apparently they show up sometimes around fast growing tissue like cancer. I had them in at least two spots, so I too had a mastectomy. While the core biopsy for me only showed some atypical hyperplasia, the lumpectomy and excisional biopsy they did after that showed ductal carcinoma (cancer), so I ended up with a simple mastectomy (much easier than a radical and all they needed for clean margins). I did a sentinel node dissection just to make sure it had not progressed to setting up camp elsewhere. If all you have is DCIS, most doctors would recommend you skip the node operation. If you have one though, do the sentinel node operation. Recovery is faster and complications are fewer. Like you, I went on Tamoxifen after the mastectomy. No chemo, no radiation. I did need to see the oncologist to get the Tamoxifen. Surgeons are specialists in surgery and mine would not prescribe oncology drugs. I saw a breast oncologist specialist. He flipped visits with the surgeon so that I saw someone for clinical breast checks for the first two years, every 6 months for two years, and now I see the oncologist and a trained nurse for a breast exam once a year when I do my mammogram on my remaining breast. It gave (and continues to give) me great peace of mind to know I was doing all I could to stomp this beast. I was floored to have been diagnosed, but since then I decided I was very lucky to have been found before things got worse. Tamoxifen was never much of a bother other than a few hot flashes and some changes in my period. Now I am on an amoratase inhibitor, but you can't go on them until your periods are history. Good luck on your journey!
  • smrsievequeen
    smrsievequeen Member Posts: 3
    #6
    thanks for encouragement and support
    thanks for encouragement and support - will come back to post following MRI
  • Watercolor
    Watercolor Member Posts: 45
    #7
    If it is truly DCIS, then
    If it is truly DCIS, then chemo is never necessary. Node checking is not either because there has been no invasion of cancer cells. DCIS is a tumor in the duct that has not invaded surrounding tissue at all.

    I was diagnosed with DCIS in November '02. Lumpectomy, rads, tamoxifen -- easy time with it all. It's 'bout six years in the past. I am fine today.
  • smrsievequeen
    smrsievequeen Member Posts: 3
    #8
    Status Update
    All, so since my last update a lot has happened! In the MRI machine I developed a mantra that was going with the noise of the machine - I will fight this disease and I will win. When I left out of the building the lawn crew had just mowed the wet grass. The smell was overwhelming and seemed so alive. I really felt empowered then. That afternoon I had my MRI results which suggested that the right breast tumor had grown 7cm x 3cm 2.6 cm and appeared invasive with a suspect lymph node too. The left breast showed two suspected fibroadenomas and 1 5mm x 4mm invasive area. The next day a follow-up ultra sound couldn't find what the MRI had seen and there wasn't anything pallable we would need an MRI guided biopsy. Which we wouldn't be able to complete presurgery. Oh...And I learned that the genetic test results were not going to be back in time to make a prophylactic choice on the left. So lots of tears and drama in our house that night. So I jumped. Right breast mastectomy and sentinel lymph nodes. 3 nodes taken - all clean. Breast all DCIS but interesting instead of only being the tumor under investigation, 75% of the breast was full of DCIS. Thank god they took it all. Healing now - better than I expected but also a bit of 2 steps forward 1 step back - the drain is not too bad. The tissue inflator is more annoyance pain than real pain. The stitches under my arm for my lymph nodes is really tender. I have my 1 week check up tomorrow and we will see where to go from there. I know that this isn't the end of the journey but it is way nicer place to be than when i heard the "C" word for the first time 6 weeks ago.
  • dbs1673
    dbs1673 Member Posts: 203
    #9
    easy does it
    Keep sounding your mantra! There are so many hard things to deal with but near the top for me was not being able to control everything. I was/am so frustrated at the time line of procedures, test results,appointments, healing, and now just trying to finish radiation.
    I too was diagnosed DCIS(May) after 3years of biopsies, including the MRI guided biopsies. Enough of those, no more! Deciding on a mastectomy, I didn't think radiation would be needed. After final pathology, my margins were very close (.3) so hence the radiation. Not thinking that the radiation was part of the plan, I also opted for immediate reconstruction and had the explanders placed at surgery. The weekly fills were quite uncomfortable at times. After finishing the fills, I started the radiation which thankfully has not caused any problems with the expanders. My chest feels like I carry around cinderblocks instead of breasts and I still get sore and tight. I think this may be from some swelling from the radiation.
    Our bodies and our minds are amazingly complicated yet also resilient. I believe that sometimes not having all the information right away is God's way of saying slow down, not all must be decided today. There are many angels out there to help guide us. If we move too fast they can never catch up to us.
  • mmontero38
    mmontero38 Member Posts: 1,510
    #10
    smrsievequeen said:

    Status Update
    All, so since my last update a lot has happened! In the MRI machine I developed a mantra that was going with the noise of the machine - I will fight this disease and I will win. When I left out of the building the lawn crew had just mowed the wet grass. The smell was overwhelming and seemed so alive. I really felt empowered then. That afternoon I had my MRI results which suggested that the right breast tumor had grown 7cm x 3cm 2.6 cm and appeared invasive with a suspect lymph node too. The left breast showed two suspected fibroadenomas and 1 5mm x 4mm invasive area. The next day a follow-up ultra sound couldn't find what the MRI had seen and there wasn't anything pallable we would need an MRI guided biopsy. Which we wouldn't be able to complete presurgery. Oh...And I learned that the genetic test results were not going to be back in time to make a prophylactic choice on the left. So lots of tears and drama in our house that night. So I jumped. Right breast mastectomy and sentinel lymph nodes. 3 nodes taken - all clean. Breast all DCIS but interesting instead of only being the tumor under investigation, 75% of the breast was full of DCIS. Thank god they took it all. Healing now - better than I expected but also a bit of 2 steps forward 1 step back - the drain is not too bad. The tissue inflator is more annoyance pain than real pain. The stitches under my arm for my lymph nodes is really tender. I have my 1 week check up tomorrow and we will see where to go from there. I know that this isn't the end of the journey but it is way nicer place to be than when i heard the "C" word for the first time 6 weeks ago.

    Thanks for the update. How
    Thanks for the update. How frustrating to have to wait for test results. But keep repeating your mantra, because you will beat this thing. Glad everything went well with you and keep updating us. Hugs, Lili
  • cabbott
    cabbott Member Posts: 1,039 Member
    #11
    smrsievequeen said:

    Status Update
    All, so since my last update a lot has happened! In the MRI machine I developed a mantra that was going with the noise of the machine - I will fight this disease and I will win. When I left out of the building the lawn crew had just mowed the wet grass. The smell was overwhelming and seemed so alive. I really felt empowered then. That afternoon I had my MRI results which suggested that the right breast tumor had grown 7cm x 3cm 2.6 cm and appeared invasive with a suspect lymph node too. The left breast showed two suspected fibroadenomas and 1 5mm x 4mm invasive area. The next day a follow-up ultra sound couldn't find what the MRI had seen and there wasn't anything pallable we would need an MRI guided biopsy. Which we wouldn't be able to complete presurgery. Oh...And I learned that the genetic test results were not going to be back in time to make a prophylactic choice on the left. So lots of tears and drama in our house that night. So I jumped. Right breast mastectomy and sentinel lymph nodes. 3 nodes taken - all clean. Breast all DCIS but interesting instead of only being the tumor under investigation, 75% of the breast was full of DCIS. Thank god they took it all. Healing now - better than I expected but also a bit of 2 steps forward 1 step back - the drain is not too bad. The tissue inflator is more annoyance pain than real pain. The stitches under my arm for my lymph nodes is really tender. I have my 1 week check up tomorrow and we will see where to go from there. I know that this isn't the end of the journey but it is way nicer place to be than when i heard the "C" word for the first time 6 weeks ago.

    Thanks!
    Thanks for the update. Good luck on your journey!

    C. Abbott

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