IlC JUST DIAGNOSED

Options
Runnermum
Runnermum Member Posts: 383
edited May 2017 in Just Diagnosed

So silly me...2 wks ago i found a lump in my breast, made an appt with my primary care Dr and went in. I was so scared. But talked to a friend who is a 8yr bc survivor and my sister in law who is an ob-gyn dr. I convinced myself it was hormonal. My primary care dr referred me to breast clinic but was also positive and felt this would be benign. I was scared and came on here and posted in the not diagnosed thread. I had my appt at. Breast clinic last Tuesday. With a Mammogram and ultrasound. Radiologist rated it a bi-rads 4a. Felt certain it was a fatty tissue lump. Had a biopsy last Friday. Felt so positive it was hormone related. About a yr ago I had hot flashes and no period for 4 months. They started up on May of last year and did not have any hotflashes for several months and had regular periods. About a week before I found lump, i started my period. My hormones were crazy, having hotflashes, broke out with acne, breasts ached. Then I found the lump.

On Monday I came on here and deleted my posts, telling myself it was so silly I had posted on here, it wasn't cancer. Yesterday i received the news...ILC , estrogen + , and hormone fed. Scared out of my wits. I have appt tomorrow with b.s., radiologist oncologist and my oncologist. Wondering how long I have had this is about putting me over the edge.

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2017

    Runnermum,

    We're so sorry to hear of your diagnosis, but really glad you came back here for support. Our Community is an amazing space for information, answers, experiences, and encouragement. We know it's a scary time right now, but with the more information you find out, the more empowered you'll feel and the road ahead won't seem so blurry.

    We're all here for you as you find out more pieces of your pathology report. You're not alone!

    You may want to also join the ILC forum, where you can meet others with a similar diagnosis.

    We hope this helps, and we look forward to hearing more from you soon!

    --The Mods

    · Share on FacebookShare on Twitter
  • MTwoman
    MTwoman Member Posts: 2,704
    edited April 2017

    Runnermom,

    I am so sorry you've joined our club! I know "you have bc" is overwhelming to hear, but you have support on these boards and amazing women to answer your questions and talk to. Please do go to the ILC forum that the Mods have posted, as there is so much experience there that may be helpful to you. While it is understandable to wonder "how long", it isn't very useful for you to get stuck there. You can do this! Give yourself a bit of time to "fall apart" and then, catch your breath, head to the ILC forum and collect valuable information so that you can put together good lists of questions for your prospective team. We are all here for you! Let us know what you need from us. ((hugs))

    · Share on FacebookShare on Twitter
  • melmcbee
    melmcbee Member Posts: 1,119
    edited April 2017

    Hi runnermum. Welcome. I was diagnosed 5 years ago at 42. How old are you. I chose a bilat mastectomy. Chemo and radiation. Then took arimidex cause the chemo put me in menopause. Please ask anything and come back for support. We care

    · Share on FacebookShare on Twitter
  • Runnermum
    Runnermum Member Posts: 383
    edited April 2017

    I am 46. And so scared. I just want tomorrow over and then fear I won't get as many answers as I want tomorrow.

    · Share on FacebookShare on Twitter
  • Lexicoe
    Lexicoe Member Posts: 66
    edited April 2017

    Hi runnermom--I was diagnosed ILC in February and the hardest part is waiting for answers.

    Unlike a broken bone, where they tell you what will happen and when from almost the get-go, the answers and plan for treatment seems to come in bits and pieces. So frustrating!

    Idecided to take the approach of only researching what I knew was coming next--which I found to be a good balance between staying informed, so I know the right questions to ask, and not overwhelming/freaking myself out with what might happen.

    Hugs!


    · Share on FacebookShare on Twitter
  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited April 2017

    ILC diagnosed Nov 2014. You are at the hardest part right now. Hugs!

    · Share on FacebookShare on Twitter
  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    runnermom.  Yes what a shock to be told" breast cancer" I am a nurse practitioner and am used to being on the other side of the desk, never thought I'd find myself a breast cancer patient. no one in family has breast cancer, other cancers yes but not this. Makes me angry and very frightened at same time. I was panicking until I saw my BS and that made it 50% better,or maybe a bit more. Everyone was positive things would be ok with me as well, then bomb dropped. Still awaiting surgery which cant come soon enough but so afraid of what the pathology will say. 

    This community has helped ease the stress and anxiety I feel every. single. day. I look forward to checking the forums everynight and connecting. You will find some peace here. Welcome

    · Share on FacebookShare on Twitter
  • melmcbee
    melmcbee Member Posts: 1,119
    edited April 2017

    Write your questions down and carry them with you. Record the meeting. Take someone with you that can help you remember what is said. Good luck.

    · Share on FacebookShare on Twitter
  • hlya
    hlya Member Posts: 484
    edited April 2017

    Don't be scared, there are lots of women here and there is an ILC forum on this site, those ILC women would have more information to provide.

    Most ILC are ER/PR positive HER2 Neg. hormone fed. Once you get your path report you will have more questions to ask: e.g. Chemo or not? Side effect of Tamoxifen? Oncotype test, etc.....


    Take it one step at a time. You will go through it.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2017

    Hi runnermum,

    How are you doing? Have you joined us on the ILC forum yet? There are a lot of us just like you there. Let us know your questions about ILC, tx for it, all that. We've got some pretty knowledgeable people there--and ILC is a bit different than IDC. We are fairly active and most will answer questions or concerns (or offer support/encouragement) when you post.

    Claire in AZ

    · Share on FacebookShare on Twitter
  • Runnermum
    Runnermum Member Posts: 383
    edited May 2017

    Hi again...I met with all 3 of my drs last week. Still waiting on HER2 results. They feel early stages (at this point stage 1, maybe 2) and I know that might change but right i am focusing on the things i have control over this week (positivity, nutrition, exercise). Very hopeful I will have surgery first and then treatment. I am trying to stay busy and off internet as much as I can except to look up info related to those 3 things. I am having a lot of panic, anxiety and stress and i know I need to stay healthy and positive to fight. I can't go over to the ILC thread at this point. I start reading and it makes me too sad and anxious. Too many unknowns and I need to stay strong for myself and my family. I am running and strength training and have a great group of supportive friends in place that are continuing to make me laugh and praying for me and my family and I will continue to live life like i have.

    · Share on FacebookShare on Twitter
  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    Runnermom,

    panic and anxiety are completely understandable, and just miserable to go through. Have you given any thought to a counselor? either through your treatment center, a local cancer support center or even non-affiliated? There are really effective strategies that can be effective to reduce anxiety and panic. As a counselor, I am biased :), but I also benefitted from having my own therapist when I was going through treatment. I feel for you and am sending warm ((hugs))

    · Share on FacebookShare on Twitter
  • Ilkkgandm
    Ilkkgandm Member Posts: 4
    edited May 2017

    Hi. It has been one year since I was diagnosed with ILC. I'm doing very well. I had a mastectomy with no regrets but I too was sad and scared when I first was diagnosed with breast cancer. My husband told me not to do research and just do what my surgeon, medical oncologist, and radiation oncologist recommended. But I Did research what they recommended. Even though I followed their recommendations, I felt empowered knowing what they were telling me and I was not surprised what it felt like after he surgery and effects of the Latrozole would feel like. Knowledge is power! I wish you well and know we are here to support you.

    · Share on FacebookShare on Twitter
  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited August 2017

    "I'm so sorry, runnermom, that you have found yourself here. It stinks, but this is the best forum to be a member. The initial shock... wow... are there really any words? I, Like you, am a marathon runner, exercise loving fool. I was downright angry. How could my body do this to me? I treated it so well with exercise and organic foods/products. I'm a devout Catholic. BUT, none of us are invincible. So, once I finally "accepted" the diagnosis and had a plan in place, I hit the ground running (no pun intended😂!).

    My advice to you: do not search the internet. Listen to your doctors and the women and men on this forum. The internet is a very scary place, and it will bring you to dark places. You owe yourself the time to grieve, but know that you have many many people right behind you cheering you on. This is your body, you can do it!!!! ❤❤

    · Share on FacebookShare on Twitter
  • MaggieMae123
    MaggieMae123 Member Posts: 38
    edited May 2017

    Hello, I was diagnosed in the summer of 2015 and I had so much anxiety . It was awful. I finally got a prescription from my Dr. for Hydroxyzine which was just enough to take the edge off and to help me get through. Once I started treatment, things got so much easier! I think once you start treatment you know that you are on your way to beating it!  Wishing you the very best! You can beat it!!

    · Share on FacebookShare on Twitter
  • Runnermum
    Runnermum Member Posts: 383
    edited May 2017

    I have been lurking but not posting. My HER 2 came back negative and MRiI showed the size as 1.7 cm. but the MRI 2 wks ago found 2 more small suspicious areas in same breast as the original cancerous lump that had to be biopsied. My lymph nodes were clear on both US and MRI and nothing showed up in other breast on the MRI. I had the MRI biopsy last week, one spot came back clean and one came back showing cancer. It is a very small spot (7mm) so my BS is still recommending a lumpectomy. But I also developed a gigantic hematoma so will see the BS this week so he can look at it and will hopefully get a date for surgery. It needs to resolve before we can schedule surgery and it is still very swollen. I am also waiting for the rest of the pathology report back on this 2nd spot. My BS said most likely same cancer in 2 areas but I go online and read and worry about this one being HER+. I hate the waiting..it just gives me more time to worry. With the hematoma, my nurse navigator said I should not be running or anything high impact until it is healed. Walking does not relieve my stress. I feel like I take one step forward towards starting a treatment plan and then there is 2 steps back. have a week and half of work left until I am done for the summer break and then can just worry about myself and my family.



    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2017

    Runnermum, try to latch onto the more positive parts of your pathology right now while you wait. Clear nodes? That's huge. I had 6 positive out of 11, other women have many more +. Right now your pathology shows HER2-, which is also good. You don't know anything else, and personally I think it would be unusual if you were since your current pathology shows HER2_. Hang onto every piece of good news about your status with everything you have right now. You caught this fairly early, which is also good. Many women on these boards wind up beginning at Stage IV. ILC tends to grow a bit more slowly than IDC, from what all the research proves. Hang onto that. And finally, resist ( I know it's hard) the urge to go online and see what Dr. Google has to say about breast cancer. Once you get a little more credible information from this site, or from your doctors/nurses, then you'll be able to look at what the internet has to say (and what it isn't saying) about BC and determine whether or not that research is 1) logical, 2) science-based, and 3) has no other agenda (like to sell you supplements or something else for a "cure").

    We've all been or are at exactly the place you are; for me, finding a way to hang onto the little bit of good I found within all the terror helped me cope a lot in the beginning.

    I'm still fearful and always will be hypervigilant about the disease recurring. I'm considered high-risk, and my MO won't let me go more than 5 - 6 months without a full CBC and check up. For two weeks before each visit, I'm a hot mess of PTSD, but somehow we get through. You'll get through. You'll see. Come here often, it's a great place to put all your fears and let us reassure you a bit during these early days.

    Hugs

    · Share on FacebookShare on Twitter
  • Runnermum
    Runnermum Member Posts: 383
    edited May 2017

    Thank u Claire! What you wrote is very true. Most days I am feeling positive and trusting my Dr ( they have been incredible so far). But there are days the cancer stress and life stress feel like they all come crashing down. I have never had much stress in my life and normally a very happy, strong and positive person. I need to hold on to the positive and keep moving forward. My best friend lost her only child in a car crash several years ago. I remember telling her many times...All you need to do is take 1 day, 1 hour, or 1 moment at a time. Nothing more then that. Some days it will take all you have to take a moment at a time, some days may be a little more, but keep moving forward little by little. I need to take my own advice.

    Just received the call from Dr...2nd spot is er+, pr+ and her2 - same as first area. No lymph or vascular invasion noted on this spot either. On to tomorrow's Dr appt and hopefully a date for surgery



    · Share on FacebookShare on Twitter
  • Runnermum
    Runnermum Member Posts: 383
    edited May 2017

    and I have to share the story of my maternal grandmother...she was dx with breast cancer in 1970 in the left breast at age 52 they took the breast, no chemo or radiation. 13 yrs later in 1983 at age 65, cancer was found in her right breast. Again mastectomy of the right breast, no chemo or radiation. She lived 28 CANCER FREE years healthy as a horse. Lived on her own until age 91, when my mom and sister put their feet down and insisted that she needed to move into assisted living/nursing home (she wasn't eating as much as she needed or able to take care of her self as well anymore) She passed away at age 93 and NOT from cancer. I like to think I have inherited her stubborn genes.


    · Share on FacebookShare on Twitter

Categories