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KatherineNaomi
KatherineNaomi Member Posts: 104

 Hi, I'm Kate, a happily married, homeschooling Mom of 3 boys aged 9, 7 and 5 and a little girl who is 2. I've just been diagnosed with DCIS. I'm still kind of in shock that this is happening. It all started with mastitis, which went away with antibiotics. Then I had bloody discharge from my nipple. Yikes! I had a clean mammogram and ultrasound. They tested the discharge and it was normal except for papillary clusters (a sign of an intraductal papilloma). I had surgery to remove the ducts last Friday. Dr said chances were 95% benign, 5% cancerous. The Dr called me with the pathology results last night. Apparently I drew the short straw because they found cancer. The Dr's were shocked. I'm only 34, I have no history of breast cancer in my family and all my tests were clear. I thought that breastfeeding my kids for over a year each and not taking hormonal birth control would have given me some protection but the cancer still happened.

I'm not sure what our plan of attack is yet. It all depends on whether or not I test positive for the breast cancer gene. If not I can have a lumpectomy and radiation, with possibly Tamoxifen for the next 5 years. If positive I may want to do a bilateral mastectomy. I'm praying for a negative result and that my health insurance will pay for the $3700 test. I'm still waiting on the rest of the pathology to find out if it's estrogen/progesterone + or -. Also, my case goes before the tumor board next Friday.

Despite the cancer diagnosis I'm thankful for a lot of things. It was caught very early, it's non-invasive and I will survive this. My breast surgeon is awesome. He's very thorough and kind and has the reputation of being the best in the area. It's the end of the school year so our homeschooling shouldn't be disrupted too much. I have lots of support from family and friends.

Thanks for listening. I'm sure I'll be looking to the boards for info and support in the coming weeks.

Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited June 2010

     KatherinNaomi,

    welcome to the club no one wants to join,

    you have a positive attitude and you definitely have alot to be positive about - early stage as preliminary diagnosis, faith in a good physician, family support. You will be having alot thrown at you in the next several weeks and alot of decisions to make.  We are here to help you through this.  

    Julie E

  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited June 2010

    I agree with Julie; it's scary to find out, but you're taking the bull by the horns and have a positive attitude... you'll be fine! You're right, the fact that it was caught early and DCIS is non-invasive really does make a world of difference. Anyway, welcome to the boards... this is a great community of many amazing women!

  • bichonlvr03
    bichonlvr03 Member Posts: 84
    edited June 2010

    I'm convinced no one really knows what causes breast cancer.  The important thing is DCIS is so treatable, most women go on to live long lives after treatment for this.  Reading these forums is very helpful.  Remember to ask for all pathology reports (if not automatically given to you) and read them carefully; ask questions before each step in your treatment. 

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Thank you for the kind and helpful words! As the news of my cancer is getting around I've found out that I do have some family history after all. My paternal great Aunt had breast cancer, had a mastectomy followed by 5 years of Tamoxifen. Also, when my paternal Grandmother had the MRI that diagnosed her colon cancer, they also found a very suspicious mass in one of her breasts that they believed to be cancer. The colon cancer was so bad that they never even addressed the breast though. She died 2 months later.

    I'm so scared that my BRACAnalysis is going to end up positive now and I'm going to have to seriously consider losing both breasts.Frown Not the end of the world but pretty scary.

  • roseg
    roseg Member Posts: 3,133
    edited June 2010

    Are you of Jewish origin? That ups your chances of the BRAC gene considerably. Otherwise you're most likely in the clear.

    I know it's a shock but it's been found early and you're taking care of it.  

    All those things that are supposed to protect you from breast cancer are iffy.  Breast feeding, exercise, weight.... At a population level they may make a difference. Individually you can still do all the right things and end up with a positive biopsy.  Hopefully you can get this taken care of and move on with what sounds like a pretty busy family life!

  • joystars
    joystars Member Posts: 95
    edited June 2010
    I'm 29 yrs old, 10 weeks pregnant and just like you I thought that having a healthy life, no smoking, no drinking, no over weight and regular exercise would keep me away form such thing. But unfortunately it didn't, I forgot a very important part on all this my family history. Even tho no one on my mother's side had cancer, there's two cases of BC on my dad's side (his sisters) and one of ovary cancer with my 23yrs old cousin.
    Had a lumpectomy about a month ago, and lymph nodes were clean.  I've been diagnosed with DCIS, cancer grade I not agressive but the tumor had not clear margins, and because of my pregnancy it grew so much (from 6mm at the moment of the mammo to 2.4mm when removed) Radio is not an option  for me, neither a re-excision lumpectomy because of my age and because my husband and I want to keep the baby. So there I will go thru surgery again in ten days, this time will be a mastectomy Cry Chemo will come later, after baby's delivery.
    I'm trying to find all the strenght in me, I'm really scared but also hopefull that going thru this surgery will help me to be healthy and be here the next 5, 10, 15 and more years with my baby, my husband and family.
  • BeckySmith
    BeckySmith Member Posts: 21
    edited June 2010

    Hi Kate,

    I'm glad you've found us and we've found you!  Although I'm also a newbie here, I'm finding out that this is a great place to hang out.  No one understands you quite like the women in this "neighborhood."

    I also was diagnosed with DCIS about 2 months ago.  At first I was told that a lumpectomy with radiation would be just as effective as a mastectomy and I was all set to choose that, thankful that  I wouldn't have to have a mastectomy.

    However, after the MRI, it was found the cancer was in two quadrants of my left breast and doing a lumpectomy was no longer an option.

    I went ahead and had a double mastectomy since I've had 15 years of biopsies, scans and scares on BOTH sides.   Aftert he mastectomy, they found abnormal cells in the right breast as well, so I was extra happy about my decision.

    Bottom line?  You and your doctor will weigh all the options and make exactly the right choice for you.  I'm glad you have someone you both like and trust--that takes a big weight off your shoulders.

    Once again--welcome! 

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited June 2010

    Good luck, Kate, with your plan of attack. My profile is similar to yours in that I have no family history, never took birth control or any hormone meds, and breast fed our children, but I'm in my 40s (youngish, I guess). I really do not know why this happened to anyone of us, wish we knew, because then we'd "stop" doing it.

    When micro-calcifications were found during my routine, second ever mammogram, I, too, was told that it was highly unlikely it was cancer -- something like < 20% chance.

    The funny thing about statistics is that the only one that matters is your own.

    I did have genetic testing and an MRI before developing my plan of attack, BS just thought these were good ideas and my head was spinning too fast to disagree with him. Thankfully (!!!) both came back fine, and I proceeded with the lumpectomy and rads option (rather than mastectomy, or had genetics said I had BRCA1 or 2, then it'd likely have been a bi-mast and later ovaries).

     BS thought it would be unlikely that my lump. pathology would be anything but DCIS, but I'd already dismissed statistics ever since first hearing that I had DCIS. So, yup, shocked but accepting when final pathology showed 1.75 mm of IDC, too.  That required 2nd general surgery later in the month to check sentinel node(s). Thankfully (!) the 3 removed showed no cancer.

    Take the time to educate yourself, and keep telling yourself that it will get easier once you have the plan. Now that I'm a few months past active treatments (rads ended in April and I opted out of tamoxifen), I'm happy and moving forward, as you will, too. The mental part of this process was truly worse than the physical, and there are days when my mind wanders back to the fear and I have to consciously snap out of it. The women on these boards have been a godsend, so please do vent and ask questions and remember that you are not alone and you didn't do anything wrong.

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Thank you so much for your replies! I'm so glad this board is here for support and information. There is so much to learn, I feel like I've been taking a crash course in breast cancer the past 2 weeks. I'm still in the waiting game. I haven't heard anything from Myriad so my Bracanalysis test should be covered by my insurance! Smile The surgeon's office also called and set me up for a breast MRI this week. Initially he said he wasn't going to order an MRI because he said DCIS can be hard to see but apparently he changed his mind. My case went before the tumor board last Friday so I'm thinking the general consensus was probably to get the MRI just in case. I'm glad to be doing it but I'm also scared of what they may find. Best to be aware of everything before choosing a treatment plan though.

    I've been trying to mentally prepare myself for the possibility of a mastectomy (if I need one I'll just do both). I've pretty much come to terms with it and am 90% sure I won't do reconstruction  (I'm only a small B now). I'm also worried if I get the go ahead to do the lumpectomy/radiation. While I'd love to keep my breasts I'm afraid I'll feel like I'm walking around with two ticking time bombs on my chest, just hoping and praying that they don't go off again. Emotionally these past 2 weeks have been such a roller coaster. Sometimes I'll feel strong and brave and other times I'm terrified. I'm looking forward to and dreading the appointment with my surgeon on the 24th so we can move forward and deal with this.Thanks for letting me vent!

    **Joystars : I'm so sorry that you're dealing with this! It's difficult enough but to add the pregnancy into the mix is so much more so. I pray that your treatment goes well and you have a happy, healthy birth. Hopefully soon this will all be behind you and you can just focus on raising your sweet baby.

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    CTMOM1234 - I think we cross-posted. Thank you so much for your post! I agree that the mental part of this is the hardest. I just want so much to get through this mess and back to the busy job of raising my beautiful kids. The thought of not being able to do that is when the fear in the pit of my stomach starts creeping in. Mostly I'm keeping positive and thankful that this was caught early and that I'll be around for a long time, breasts or no breasts.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited June 2010

    Kate: Your "ticking time bomb" comment really hit home, because I, too, feared that. Being young, we have a lot of years, hopefully, before us, and I did/do worry about the other shoe dropping. The one thing I knew was that I'd make the best decision with the information I had at the time, and then I would not have regrets or otherwise beat myself up in the future.

    I am happy that I was given an option of lump.with rads or mast., because not everyone is given that option. There were a lot of wise women who'd posted about their depression, most times much more than they'd expected, after having one or both breasts removed and an equal amount of wise women who wrote how relieved they were to be breast(s) free. After reading tons and tons of these posts, it just hit me that I just was not mentally ready to permanently remove a body part and lose the sensation forever, and I would rather have as many days as I could with them and take the future biopsies, testing, whatever, ...

  • mjh69
    mjh69 Member Posts: 34
    edited June 2010

    Hi Kate

    I am also new here. Just diagnosed after a routine mammo. I was called back for what appeared to be calfications.  Upon second view, radiologist gave me two options...wait 6 months and come back to check for changes, or have a stereo biopsy. I chose the biopsy.  Just today it was confirmed...DCIS.  Estrogen positive. I haven't seen the entire report but will meet with surgeon on Tuesday. I have an MRI tomorrow.

    I pretty much could have written your intro-I have 4 kids also.  I don't homeschool but I can relate 100% to everything you wrote...down to the ticking time bombs statement.    I am glad I found this site; I am going to learn a lot from the great ladies here.

     As I figure out more about my own destiny I will share.   I hate to say that I am glad there are others in this situation but it does make me feel like I am not alone at this difficult time.

    I am sorry you are experiencing the same issue as me, but I think we will be able to get through this with the support of family and the advice on this board.

    God bless,

    Margaret

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Margaret, I'm so sorry you're also going through this. I'm sure your head is spinning with your recent diagnosis. Take comfort in the support network here. There's so much great info and lots of women to commiserate with. I'll be thinking of you tomorrow as I'll also be getting my breast MRI. I hope your appointment with your surgeon goes well too and you're able to get through this with minimal treatment. Take care, Kate

  • LuvUMom
    LuvUMom Member Posts: 14
    edited June 2010

    Hello everyone.  My mother was diagnosed with breast cancer on May 7, two days before Mother's Day.  The BS called me with the news since English is not her primary language and I interpret for her at all her doctor appointments.  I kept the news from her until Monday morning so that at least she will have a good Mother's Day.  She and my father owned a small business and worked 12-hour days seven days a week for over twenty years.  They were retired just last year... 

    To make matters worse, they also take care of my 39 year-old brother who has paranoid schizophrenia.  We kept the news from him since we did not know how he will react.  It may make my parents' lives even more stressful.  My mother breezed through her lumpectomy and expected only to need radiation.  We were all very happy that the bc was caught early.  However, from her medical oncologist's appointment last week, we learned that she will need chemo.  She had an Onco type score of 56!  Needless to say, we were devastated.  My mother has been staying positive ever since April when she first had the abnormal mamo.  For the first time in my life, I heard her say she was scared.

    I don't yet have a question for the community.  Just a rant, I suppose.  We've been keeping her diagnosis from everybody.  Not even my husband knows that my mother was diagnosed with bc.  My mother will start her chemo next week.  I don't know how we should break the news to my brother and worry what his reaction will be....

    DX-- 5/7/2010, IDC, 0.9 cm, 0/2 nodes, grade 3, ER+ PR- HER2-, Stage 1b, Onco type 56

    TX-- TC x 4, every 3 weeks, 33 rounds of radiation, Tamoxifen 5 years.

    [Edit] [Delete]
  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited June 2010

    Kate and Margaret - Hope your MRIs went well today.

    Am sure you're glad that's over with (I find it to be a very weird experience, but fortunately not as painful as the stereo.biopsy).

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Thanks! The MRI went well. Definitely strange but not too bad. Hope yours went well too Margaret. :)

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Ugh, got a call from the surgeon today with good news and bad news. Good news is that I tested negative for the breast cancer gene (yay!) and my left breast looks good. Bad news that is in my right breast they found another spot that looks "very worrisome". I go for an MRI guided biopsy on Thursday. Hoping the anecdotal evidence that MRI's have a lot of false positives is true.

  • easyquilts
    easyquilts Member Posts: 876
    edited June 2010

    Katherine...I'm so sorry you have had to joion our club.....However, this is a wonderful place to some for support and real information.....We're all in your corner.

     I just read that you have tested negative for the BC gene, but that your other breast may have a problem.....So sorry to hear this.  Be sure to keep us posted.....

     God Bless,

    Sandy

  • laurakay
    laurakay Member Posts: 109
    edited June 2010

    I'm sorry to hear about this, and will be thinking of you.  I have to say that it seems unlikely to me that you will have the gene.  I'm surprised they're even testing you--your age, I guess?  I myself have breast cancer on both sides of the family, and my mother had it at the age of I was diagnosed at myself--48.  I took the test assuming I'd be positive, and wasn't.  I have a friend who was 37 at diagnosis, and her younger sister was diagnosed with bc the next year.  They're negative as well. You're right to be thankful for exactly the things you mentioned--esp that it's been caught SO EARLY so you can get rid of it and get on with the rest of your healthy life.  I had a bilateral mx three months ago, with immediate recon--and that seems your worst case scenario--and I've been feeling great, started exercising and entirely normal life w/in a month.  My 14 year old son barely even knew what was happening except for the two weeks after surgery when I had drains in, if this makes you feel better. Life goes on well, and pretty quickly! Hug.

  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited June 2010

    Well, the surgeon called last night about the results from the MRI guided biopsy. The worrisome spot is invasive cancer. I go in next week to discuss our plan of attack and hopefully set a date for mastectomy. It's the only option at this point since my DCIS and the invasive spot are in different quadrants and I have small breasts. Right now I'm praying for negative nodes and an easy recovery. The invasive spot is grade 1 which makes me feel a little better but I'm still terrified.

  • sweatyspice
    sweatyspice Member Posts: 922
    edited June 2010

    I'm so sorry. 

    The only advice I can offer is to think through your reconstruction options and consult with some plastic surgeons. (Assuming you decide that you DO want to do recon...)

    Here's hoping you can still avoid chemo!  Depending on your oncotype score and various other factors, it's not always necessary.  As someone with "pure" DCIS though, I don't know enough about that to say more.

    No matter what happens, you'll get through this.

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