Worry worry and more worry

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Kkubsky
Kkubsky Member Posts: 231

I am very confused about recurrence rates after DCIS. I know grade, size, age, etc all factor into this. I worry about getting not only DCIS again, but invasive ca. I recently had a lumpectomy and will be starting radiation soon. I am ER/PR negative so I would guess no hormone therapy. Fortunately, there was no microinvasion in my pathology but to me, there was a lot of "nasty stuff" in my ducts....necrosis, solid, comedo, micropapillary, adh... I wonder if maybe there is more "stuff" that they didn't see. I am wondering if I should have had a MX, although I realize that is no guarantee either.

I was feeling great after my lumpectomy....was told clean margins, pure DCIS. But now I am trying to decipher my pathology and am getting scared again. I would have liked BIG margins, and that is worrisome to me too. I have a lot of questions to ask at my follow up. I guess I can also ask the rad onc I am seeing this week.

I am getting myself so worked up again that I may need to take Ativan again. Does the worry ever end??????

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited March 2016

    I don’t think it ends, but it does lessen ... at least it did for me, but I didn’t worry as much as you seem to be. Have you tried the DCIS nomogram from Sloan-Kettering? You may find it reassuring ....

    http://nomograms.mskcc.org/breast/DuctalCarcinomaI...



  • Kkubsky
    Kkubsky Member Posts: 231
    edited March 2016

    Thank you. Tried it and it was reassuring. Some of the things I have been reading on line are terrifying. I think I saw one place that said 60% recurrence rate. My surgeon originally said 8-15% (with rads). I really do have to stop reading all this online stuff.


  • percy4
    percy4 Member Posts: 477
    edited March 2016

    I have been able to get back to pure normal, even with a microinvasion (very non-aggressive markers). I also had clean but close margins, and that's why I elected to have rads. I did not, however, accept hormone-blockers because of the possible side-effects, and as my personal recurrence chance is thought to be low. If I had had young children, I would have tried them. I am amazed at how involved I was in every aspect of my cancer; even paid an outside expert pathologist (Dr. Michael Lagios, the world expert, you can Google him and his services; worth it), and still am now back to normal. I am not happy about possible long-term side-effects from rads, but had to conclude that the numbers showed me it was in my best interest to have rads, and I had to treat the cancer I had when I had it and not worry about later. I am comfortable with the no hormones, probably because of my low recurrence chance and also because exercise cuts recurrence by over 30%, according to my RO, who is very study-based. I'll take that. I do not like that I am at increased odds of getting another BC as opposed to women who have never had one, but also get that as one gets older, it's always something. I'm good. I think you will be, too. There IS a way to ball-park predict your personal recurrence chance. Ask your MO, very specifically, and there are also methods on-line (CancerMath, etc.). Most, VERY most, of we women, and especially you, with no micro, will be just fine. It is just a question of getting past the present situation, treatments, etc., and going on. No head in the sand, but it's true. I worry more now that my blood pressure is increasing from stress (from other things) than I worry about breast cancer, and I am a very intelligent woman. Just saying.

  • percy4
    percy4 Member Posts: 477
    edited March 2016

    I do have to add, however, that at every mammo I turn into a little puddle of mud till I get the good report. I probably always will, as one picture can change your life. That's normal. I also know, however, that it very most likely will be OK. Still; I'm human. Check in with me around mammo time (Oct. - Nov) and you will see a more scared me. Still; that passes.

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited March 2016

    kkubsky,

    I see u are from Connecticut! What county? I'm in litchfield county.

  • Mckaylaleigh
    Mckaylaleigh Member Posts: 90
    edited March 2016

    Kkubsky,

    I don't have anything of value to add as I share in your fears. I haven't had  my BMX yet (Monday) but I am currently in fear it will be invasive and then after that, I will always be in fear of recurrence. I don't think there is any way around it.  All we can do is stay on top of our health and our appointments and hope for the best.  I am hoping with time, as Percy said, that I will be able to relax a little, but even with a BMX, there are still recurrence risks but I wont be getting mammograms to find it. I hope things get easier for you, ~hugs~



  • have2laugh
    have2laugh Member Posts: 132
    edited March 2016

    There is worry- not sure that your choice of treatment, borders or any other prediction decreases that but like others say it lessens creeping back up when follow ups are scheduled. I can't forget about it- little daily reminder in evening w lymph edema massage but even that no big deal. Today is my birthday exactly two years from first surgery I'm grateful and not worried today-that's good enough for me-you'll get there- give it time.

  • Mckaylaleigh
    Mckaylaleigh Member Posts: 90
    edited March 2016

    Happy (belated) birthday have2laugh!!

  • Kkubsky
    Kkubsky Member Posts: 231
    edited March 2016

    well tomorrow I start radiation. Feeling a little anxious. I had a few weeks of almost forgetting about DCIS but now it is back in the forefront of my mind. I just obsess about recurrence. I just feel like cancer is going to come and get me. I try to remind myself that the odds are with me. My husband is tired of me being so negative. I am tired of it too! But recurrence terrifies me.

  • calidancer
    calidancer Member Posts: 88
    edited March 2016


    As for the worry, I am generally a worrier and I hate the uncertainty. I just had a followup MRI and got the all clear. My doc called me the very same afternoon which was a true blessing. I don't think the followups will ever be easy.

    Remember though that the 20 year survival rate is like 98%. So it's likely we're going to be just fine. But if you need to take an Ativan (or half) every once in a while DO IT. 💓👌

  • Kkubsky
    Kkubsky Member Posts: 231
    edited March 2016

    All my drs said no to hormones. And isn't Tamoxifen for pre menopausal women?

  • calidancer
    calidancer Member Posts: 88
    edited March 2016

    I've edited my post, I was incorrect about maybe doing Tamoxifen for the healthy breast. It may increase risk for er negative cancers.

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