Numb.

KimmersOhio
KimmersOhio Member Posts: 9
edited September 2016 in Just Diagnosed

I got my diagnosis yesterday afternoon about this time. I've collected my thoughts, wiped the tears, was held, rocked and hugged by my husband, and cried enough to last a thousand lifetimes. I'm sitting here, thinking, 'How do I say the words?'

The "what if's" and waiting is over. After a whirlwind of 4 appointments since the second week of August, my doctor gave me the news.

Invasive Ductal Carcinoma. I have a surgical consult on Tuesday. I don't know how to tell my kids. (29/Ohio 27/Ohio 27/on Deployment in Africa, and 22/New 2Lt Nurse in the Air Force.

I know there are many of you in my boat, (I wish I was on a boat- I love cruising). I'm just reaching out to say, I'm going to stay positive, I'm going to FIGHT THIS, and I WILL NOT be defeated.


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  • seq24
    seq24 Member Posts: 530
    edited August 2016

    Kim,

    Just wanted to let you know that you are not alone in this. You have found a wonderful place of support. I too was recently diagnosed (July 22). I spent days on end crying buckets of tears. Had surgery not quite 2 weeks ago and will meet with oncologist to find out the next step, although I already know what it is. You have the right attitude to stay positive! Please be in touch!

    Karen

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2016

    Kim, we are all “in your pocket” (an expression you will see often here)--our thoughts are with you and we hope you can take some of our advice with you as you navigate these uncharted waters. Once you have the full picture and a treatment plan in place, the uncertainty gives way to determination. You can and will do this--and we are with you every step of the way.

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  • nye1980
    nye1980 Member Posts: 69
    edited August 2016

    As everyone will tell you, this part is the worst. Once you have all the information it becomes much more manageable, though still emotional (of course!). Hang in there and remember that there area multitude of options for pretty much every stage and every type of BC. You've got this.

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  • Oakmoss
    Oakmoss Member Posts: 28
    edited August 2016

    Hi Kim, I was diagnosed on July 11th, and my heart goes out to you! I was pretty calm initially, and hopeful because I know so many stories of women who have been treated and done well -- one friend of my mother's had a MX almost 35 years ago, and is still here and fine. Now that I am getting closer to my surgery, I am more anxious. I expect this will be a rollercoaster ride. I'm new to these boards, but the information and support are really great.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    KimmersOhio-

    As you can see from the responses you've already gotten, you have come to the right place for support during this difficult time. We're so sorry you find yourself here, but you are not alone, and we are with you every step of the way!

    The Mods

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited August 2016

    I was in your shoes last summer. It was a bolt out of the blue--I had just had a full physical, complete with normal breast exam, 3 weeks prior to the fateful mammogram. Danged if there wasn't a lump in there almost the size of a cherry, and nobody saw it!

    How I told the kids...as you know, it's really hard to know what to say to your adult kids. Even though they're grown up, they still are our babies and we want to protect them.  I called my kids, ages 23 & 30, and told them I wanted to have a family meeting to "talk about some things."  I baked cookies, even. When we all got there, I told my DS to bring us the plate of cookies I had laid out.  He came back with the plate and said, "I'm getting a bad feeling here, like someone has cancer or something."  D'oh!  So, I owned up that I, indeed, had breast cancer. I told them that my cancer was early and that I wasn't going to die from it. They took that at face value and didn't ask a lot of questions. Life went on.  I had chemo, lost my hair, went to the ER a few times, had surgery after surgery, and my kids were great. They aren't touchy-feely people, but they took care of the dog, mowed the grass, made dinners for us, and held my hand in the hospital when DH was unable to be with me.  And then 9 months later we had to do it all again.  DH was diagnosed with advanced prostate cancer. This time we dispensed with the cookies and went out for beer and pizza, instead. Once again, they arose to the occasion, with meals, dog care, and chores.

    Life does eventually go on.  Right now you're in that awful place where you have some information but no plan. Once you get a plan in place, I think you'll feel a lot more in control of your situation. It will be okay, whatever it is.  We are far stronger than we ever thought we could be.


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  • Jiffrig
    Jiffrig Member Posts: 232
    edited August 2016

    Kim, I was given the verdict 5 weeks ago today and had to wait until the next Tuesday for a plan. Made for a long weekend. Even though I was was all 4 of my adult children that Sunday, I waited until after Tuesday to tell them so a could matter of factly tell them what was happening. I think they were happiest yo learn I would not lose my hair as I had researched cold capping. They said they were glad I waited until I knew what was in store. I was done crying by then so they did not panic. Even in their 20's and 30's they look to Mom for how to react. They are my greatest support along with my DH. I am already 1/4 way through chemo with a bmx date set for December 6. It goes fast and has been very manageable.

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited August 2016

    Thank you for your kind words. Who knew so much kindness and compassion was in store for me! I'll try to navigate this site, I seem to keep running in circles. LOL. Does running in circles count as exercise??

    I'm less tearful every day. I see women on this feed who are amazing and full of knowledge. I pray your journey will be successful and your hope never fades!

    Hang in there sister, we've got this! !~ Kim

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited August 2016

    Wow. You've been through a lot! Thanks for sharing.

    I did finally tell my kids. The boys took it best with a "we've got this, cancer doesn't know what it's up against if it picked MY mom" attitude. My oldest daughter (29) lives nearby, she was quite shaken, but determined to fight with me. My youngest (22-today!!) is a nurse, Leiutenent in the Air Force and away for the first time on her own... out of range to drive in Florida since August2nd. She took it the hardest. She wouldn't talk to me because she didn't want to ME to hear her cry.

    As days go by it gets easier. Less tearful, and I'm incredibly humbled by the amount of support in this forum.

    As I type I pray the person reading this is blessed with the goodness of the God.

    Thanks! Kim


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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited August 2016

    Yes thanks! I only wish I knew how to use this type of forum!

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited August 2016

    Thanks Oakmoss. I appreciate the time you took to reach out!

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited August 2016

    UPDATE.

    All my kids now know of my dx. I saw a surgeon yesterday, the BRILLIANT work of my doctor. He knew that putting me in contact with a surgeon was quicker than me going thru "the system" to get in to see an oncologist. Apparently, when surgeons make a referral, they're given priority! He really didn't tell me anything about MY cancer, being a surgeon, but he did describe the battle ahead. Have I mentioned that I'm a warrior!? I also went out on my own and sought out an oncologist in my insurance network, which led me to Cleveland Clinic.

    I contacted The Cleveland Clinic to set up an appointment. Within 90 minutes of that call, I received a call from a nurse who told me I had a TEAM of folks assigned to me for my care. (Really? A TEAM?? Already?) Yes, 2 RN's, A Plastic Surgeon, an Imagery consultant/Radiologist, Oncologist, Surgeon, Social Worker (?), and a few others; I got their names AND phone numbers. I have my BIG DAY tomorrow. I get to hear my plan and give my input. I'll meet everyone on my team throughout the day, but most important, I have appointments with Oncology, Surgery and Plastic Surgery. The others will pop in to one of my appointments as their schedule allows. WOW.

    So, right now, I'm just so interested to hear what they have to say, what stage I'm in, what terminology they can help me with....
    "strongly immunoreactive for E-cadherin" ???? Anyone???

    As of this writing I'm so uplifted. Thank you all who've posted. I don't know how this "feed" or "stream" works, but I'll figure something out.

    Truly, I'm humbled and touched by the outpouring of support! Have a great evening all!

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited August 2016

    What a great update!
    It sounds like you are in excellent and very capable hands, which is terrific! Happy

    Good luck tomorrow, at your appointment. Once you learn more info about your cancer, meet your doctors, and come up with a treatment plan, you WILL feel better. You'll feel more in control and ready to do what needs to be done. (Although you sure seem ready for that already!)
    You have a wonderful outlook, which will help you so much!
    ((((Hugs))))

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2016

    Kimmers, e-cadherin staining distinguishes ductal from lobularcancer. Positive for e-cadherin means it is ductal, which you already know yours is.

    An absence of e-cadherin is a hallmark for lobular breast cancer

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited September 2016

    I have a plan! Thanks EVERYONE! You've been so uplifting to me!

    Long day. Met with plastic surgeon, radiologist, more mammograms another ultrasound, oncologist and surgeon. 8 hours of continuous appointments.

    We still only have half of the pathology report - so there are still questions as to the hormone receptors, and some other test, but it is definitely cancer. Just the reactivity we don't know. Plus a question about genetics since my paternal ain't got breast cancer at age 30.

    My tumors are not concentrated in one area as originally reported - it's at 4,8,9 & 12 o'clock - so pretty much all over.

    I made the decision today, rather than go through this again - as 2 years ago I went into surgery for a biopsy, and now this- I am having double mastectomy and reconstructive surgery- all (hopefully) in the same day.

    Chemo is not in the picture at this point. Radiation is also doubtful with mastectomy and catching it so early!

    I didn't cry at all today. I have a very capable team of wonderful people working for me and I'm confident in their skills.

    I asked if this could wait a few months - the oncologist said .... "Uh, no. We're talking weeks!"

    They don't want it to spread to lymph nodes ... So it's good we caught it early!

    I am hoping to heal well and drive cross country with my daughter to her new military base in California-- surgeon said hedge with no problem as long as we get into surgery soon. THe surgeon said that should not pose a problem as long as I get up and walk every hour - rest area stops would be fine.

    So for now I'm waiting on the Surgery date. Probably in the next 10-20 days. The plastic surgeon isn't available next week- he's going to Japan.

    For now, tonight I will rest easier knowing what to expect. I've tried to be strong and positive over the past week- it's been one week since my diagnosis. Physically I feel better when I make the conscious effort (and it's tough at times) to remain positive.

    I pray tonight that God will comfort those in pain and those going through cancer- that a cure will be found soon, and that everyone reading this tonight will know just how much supporting and uplifting others can make a huge difference walking down this scary road!

    Peace be with you all!

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  • Jiffrig
    Jiffrig Member Posts: 232
    edited September 2016

    are you doing the nipple sparing/ tummy tuck reconstruction? I am doing that in December, one big surgery, but done after that. It's the most natural and least chance of infection

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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited September 2016

    I'm back.

    I've had two appointments now with my TEAM at Cleveland Clinic. I've decided to have DIEP Procedure, which was one of the 6 appointments last week. My surgery is now set for 9/12. With the double mastectomy and the DIEP, my plastic surgeon says the total of the two surgeries combined will be anywhere from 16-20 hours.

    That's a little unsettling, but it's what I want. I'm told that because of an appendectomy when I was in high school, the arteries and blood vessels may have been compromised, if so, I'll leave surgery with tissue expanders and a complimentary tummy tuck. Was he trying to make me smile? Ha!

    My initial biopsy pathology results came back... now I know... ER+ (95) PR+ (85) and HER2+. I just know that the receptors are active and the HER2 means something about possibility of recurrence.

    I met with Genetics for a BRCA1 BRCA2 Test and another test for Chromosome mutations.... little buggers. Waiting on those. I also had the pre-op consultation about taking care of the 4 drains that I'll be coming home with, how to shower with the chemical soap, what not to eat or drink.... and then had more labs, a full physical and one other appointment which escapes me at this time.

    My oncologist wanted to start me on Chemo before my surgery. I opted out. I am postponing my surgeries by 3 weeks because I just needed the time. I'll be going in for my surgeries 7 weeks post diagnosis. Scary, but I weighed what I needed to do, VS- the stress of canceling plans that I had already made.... long story. Anyway...

    I noticed two appointments in addition to my post Op surgical visits. "Hematology Oncology" and Radiation Oncology. I wanted to talk about Chemo and Radiation, but my husband wanted to keep everything positive. At first, the docs were talking surgery and done. Now that the rest of my pathology is back and doc wanting to start chemo before surgery has me nervous. I wanted to talk about things. My husband refused. He couldn't understand that even though I said I was going to be positive, even though he didn't want to talk about it .... I WANTED TO TALK ABOUT IT. I almost feel as if he refuses to think anything about it like sweeping it under the rug--- but for me it was still the elephant in the room. ANYONE ELSE???? Am I being stupid?

    So... still feel like I'm in a FOG. The world has continued to revolve...the sun comes up, the moon comes out, lawn gets mowed, and ..... I'm still trying to hold on to every moment I can remember "BEFORE" cancer. The days are just 'different'. I cannot explain it. I'm consumed, every thought, every action, every consideration has to do with cancer.

    My first medical bill came in, the first of 18 -so far. I'm so nervous about what this is going to do to us financially. I'm hoping to download some great books on audio for the 5 days in the hospital -postop. I just finished EAT PRAY LOVE for the third time. I love the way the writer sculpts her sentences.

    That's all for now. I hope you all are having a great week!


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  • KimmersOhio
    KimmersOhio Member Posts: 9
    edited September 2016

    Jiffrig, Hi there. I'm having the DIEP (flap) for both breasts, losing both nipples (1 by choice, the other because the cancer is right below the RT nipple)


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2016

    Hi!

    One reason your team probably wants to talk about chemo is because you are HER2+. HER2+ cancer used to have some of the worst outcomes, but with targeted therapies like Herceptin and Perjeta, women who are diagnosed with HER2+ cancer have similar outcomes to other women with IDC. Typically, Herceptin and Perjeta are given with chemo (one of the taxanes -- Taxotere and Taxol). That may be why they're talking chemo now.

    Many women who are HER2+ do chemo before surgery because Perjeta is approved by the FDA for neoadjuvant (before chemo) use in women with early stage breast cancer. If you choose surgery first, you may find it more difficult to access Perjeta. It's not impossible to access it after surgery; it's just that insurance companies are less likely to put up a stink if you follow the recommended course of action.

    If you have any questions about triple positive cancer, there is a wonderful thread devoted to those of us who are +++. Best wishes to you!

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  • Jiffrig
    Jiffrig Member Posts: 232
    edited September 2016

    Kimmers, you may want to consider chemo before surgery, especially if your doc suggests it. It is really the best way to get a good surgical outcome. Unless your surgeon is doing this procedure blindfolded, it should not take more than 10-12 hours. I would question that.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2016

    RE: Jiffrig's comment..... I would say that because I underwent neoadjuvant chemo, I ended up choosing a lumpectomy and avoiding reconstruction (which can involve multiple surgeries) entirely. After five months of AC+THP, both a PET scan and an MRI showed that I had no active cancer left. As a result, my surgeon took a golfball-sized amount of tissue around my surgical marker, and that was it. I just have a scar, and my affected breast otherwise looks (and feels!) normal. I realize that you have multi-focal cancer and a BMX seems like the logical choice. However, your medical oncologist is going to recommend chemo either way because you are HER2+. Neoadjuvant chemo may give you more surgical options.

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