When does it become "real?"

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Addlantan
Addlantan Member Posts: 8
edited May 2016 in Just Diagnosed

I know this will differ from person to person, but it's all very surreal to me still. On March 17, at age 40, I was diagnosed with ILC (Stage 1a, grade ii) in my left breast, inner quadrant. 6 months prior to that, LCIS in my left breast, outer quadrant. 1 month prior to that, 2 pulmonary embolisms in my left lung (no causal factors).

I had an MRI after the ILC dx, but nothing further has been done. The MRI did show another suspicious mass in the 12 o'clock region that is about 5mm. The surgeon said we could biopsy it, do a lumpectomy on the other mass and possibly this one depending on what they found. She also said if it were her, she'd have a mastectomy - of both - because with LCIS it's common to have it show up in the other breast eventually. And LCIS will - usually later than sooner - become ILC. So I opted to have the mastectomy/reconstruction so I wouldn't have the fear/anxiety of "what now?" with each mammogram/ultrasound/MRI I get.

So now we are 2 weeks out. Of course I'm nervous, scared, angry, anxious, etc. When the mastectomy is performed, they will also remove lymph nodes and test those as well. So while I'm at a stage 1a now, that could all change. Right now, I won't have to have any radiation or chemo, but again...the surgery could change all of that.

People keep asking how I'm feeling/doing, to which I say fine. Not much gets to me (my husband jokes that I'm a "type z") and I usually just roll with whatever comes at me. In a way though, I feel guilty for not feeling the way people think I should be feeling. I hope that makes sense. It still feels odd to say "I have breast cancer", but through it all, nothing I've been told actually surprised me.

It still doesn't feel "real" though.

Comments

  • Angtee15
    Angtee15 Member Posts: 209
    edited May 2016

    Addlantan I'm sorry to hear about your diagnosis! I am 43 and also had two pulmonary embolisms in January. Cancer actually makes us more inclined to develop blood clots and yours occurred close to the LCIS diagnosis. Are you on blood thinners now?

    As for when this becomes real, I am still in disbelief. Even after 5 months of chemo and facing the bilateral mastectomy next week. My guess is this will all feel like a bad dream when its over. Maybe ladies who are farther out from treatment will be along to share their perspective.

    I wish you the best with your surgery. Hugs!

  • Dawn41
    Dawn41 Member Posts: 54
    edited May 2016

    Hello ladies I too am early 40's (41). I was diagnosed March 15th and it still don't feel real. I had chosen to go with a lumpectomy trying to save my breast after genetics came back normal, that was 2 1/2 weeks ago. The morning of the surgery my surgeon told me she was also going to remove another area of concern that had earlier been ruled out to be anything, and I was fine with that let's get this out of the way and move on. Well when pathology came back she let me know that not only site b came back to be invasive lobular carcinoma but when clearing the margins for that area she came across another area and she removed some of that to have tested which in turn also turned out to be cancer as well with the negative did come a positive no lymph nodes came back positive. Still in shock over everything. I thought I was well on my way to moving forward to have to find out that it would be best for me to go ahead with the masectomy. In all honesty that choice was easy I cannot keep going through this and putting the family through it. The unknowns are too scary.

  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    For me I knew it was real before dx. End of May last year I felt pain get worse, stabbing. I knew in my gut and it was confirmed on 6/2. I've never been in denial. I just said ok and started researching which brought me to this site.

  • Addlantan
    Addlantan Member Posts: 8
    edited May 2016

    Angtee15: I'm convinced that the blood clots were caused by the cancer. It's too coincidental that it was the same side of the body! My OBGYN said something after I had the clots and beforehand sent me for my baseline mammogram. He said "we known for some cancers that can cause blood clots, but we don't know of all the cancers that can cause blood clots." That has stuck with me through all of this. I came off the Xarelto in February.

    I know I'm making the right decision but sometimes it feels extreme. Especially when I tell someone I have stage 1 bc and I'm having a DMX. I've gotten several, "stage 1? Really? And you're having a DMX?" From what I know, chemo isn't much of an option with ILC and we don't know if it's in my nodes yet. I can do rads, but there are no guarantees. My cancer is ER+/PR+ but tamoxifen isn't an option because of my history of blood clots. So where does that really leave me? I guess at times I feel like I'm jumping the gun. But at the same time, from what I had learned when the LCIS was found in my left breast last Fall, it was never a matter of "if" I would get cancer, but "when". I think the "when" just came a lot sooner than anyone expected. And if I remember correctly LCIS is also more likely to develop bilaterally. So while my right one seems to be behaving now, I don't want anything to rear its ugly head later

  • Angtee15
    Angtee15 Member Posts: 209
    edited May 2016

    Addlantan I am injecting Lovenox 2x daily but will be switched to Xarelto after my surgery. I have to stay on the blood thinners after they found out I have that Factor 5 Leiden gene mutation for blood clotting. That + cancer lead to some epic PEs. Ugh. I went from being a healthy person getting the occasional cold to being on this endless train of doctors, treatments, drugs and now surgeries. Ughhhhh.

    Anyway good luck with your bilateral mastectomy. Mine is Wednesday. I was a candidate for lumpectomy + radiation on the left but I am not interested. I had some benign issues with the right one but I am not convinced it won't turn on me too. So that's that.

  • hsant
    hsant Member Posts: 790
    edited May 2016

    It was "real" for me as soon as I got the call that there were "areas of concern" on a routine mammogram. I have a strong family history. I lost my mom and sister to breast cancer, and my paternal grandmother was a breast cancer survivor. So, regardless of what the radiologist said (80% is benign), I knew this was not the case for lil ole me.

    When I found out it was DCIS, I was grateful. Yay! That's not "real" cancer. I'm not swimming in the pink ribbon pool. I'm just tipping my big toe into the water.

    I opted for a BMX, and pathology found IDC, 1.5 cm. That's when it became really real.

  • StaceySue2U
    StaceySue2U Member Posts: 281
    edited May 2016

    I had my mastectomy on 2/25 and I'm almost done with my expander fills. Everything happened so fast, it was over before it was real. No chemo, no radiation.....and now I'm almost done with Dr. appointments.

  • Addlantan
    Addlantan Member Posts: 8
    edited May 2016

    Thank you all for sharing your stories! Even though I know I'm not alone, sometimes it feels like it.

    It became more real today I think. I had my preop with the plastic surgeon, and have been on the verge of tears all day since. I don't think the cancer itself, or the surgeries are what has me down. I'm a go getter - and do not ask for help unless it's absolutely necessary. My husband travels for work and has since our now 13 year old was 2. It's my norm. I do everything to maintain and run our family. Being out of commission for several weeks doesn't sit well with me. I know I have to take it easy, but I also know my personality...and once I'm home from the hospital, I'm going to struggle to rest. I'm sure I won't have my normal energy level at first, but I don't know if I can be "still" for 3-4 weeks as being suggested to me. My clue that today wasn't going well....when I started to tear up because my starbucks app wasn't working for 1/2 price frappacino day! :0

  • Annette47
    Annette47 Member Posts: 957
    edited May 2016

    I’m not sure it ever did become “real” for me. I remember one day at radiation, standing there in my hospital gown with my scarred, swollen boob, directly under a sign that said “Cancer Center” wondering why they were giving ME a giveaway (nice robe) meant for all their patients with breast cancer.

    Now, 3+ years out, I *know* it happened, but it all seems so surreal and far away.

    Of course I could just be particularly good at denial!

  • pab
    pab Member Posts: 53
    edited May 2016

    You have to ask for help. It actually helps other people to help you. Ask them to make you food. It's easy for them and they love to do it. See if someone can get you a cleaning lady! That was the best gift yet!! Last thing I wanted to do was clean!! I do feel like I'm in a cloud sometimes even almost a year later. I try not to dwell, too many bad things come from dwelling. I have 3 beautiful children and they are what I look forward to! It all is real tho and it sucks! I'm not trying to be negative just honest. This is unfortunately becoming way too common now and I felt when I was diagnosed I just said well, let's get rid of this crap and move on with my life! I think, obviously, I'm a bit more angry than sad but that fuels me to keep moving forward. Keep your head up and stay positive.

  • Angtee15
    Angtee15 Member Posts: 209
    edited May 2016

    The way I looked at it was (and is) people feel helpless around you so if you can let them bring you a meal or pick up your kid you are doing THEM the favor lol!!


  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2016

    Me too hsant. I remember the day 2 weeks after my routine mammo I was thinking I hadn't gotten my "all clear" card in the mail and then I got the phone call from the nurse. She said one breast was bigger than the other. Of course I bombarded her with questions she couldn't and wouldn't answer and I was left with I bet I have BC. I knew. I'd never ever been called back in after I left the clinic. I was remarkably calm considering.

    I was in a fog going through the motions for weeks. BS appt, surgery for lumpectomy, follow up surgery evening the margins, 33 Rads treatments and Tamoxifen. Now 5 years out in August I know I am not out of the woods and probably never will be but time does help. I had a low Oncotype test score which is encouraging. No guarantees but definitely a positive sign.

    We are all branded with the C word. We have to live with that but it doesn't have to define us.

    Diane


  • etnasgrl
    etnasgrl Member Posts: 650
    edited May 2016

    I finished active treatment in February and it still doesn't feel "real". I wonder if it ever well.

  • Addlantan
    Addlantan Member Posts: 8
    edited May 2016

    I will say that as I get closer to surgery date (May 20) it's becoming more real. I had my preop with my BS today, and she was able to answer a lot of my questions. One thing I've been concerned about is them finding cancer in my lymph nodes. She said they would know that before I come out of surgery. That put me at ease knowing I won't have to wait a week or more for those results. I honestly feel like I'm about to have a baby...not literally, but all the preparation. Having my hospital bag ready to go, my house clean, my laundry done, people lined up to bring food and take care of my kids...yep, pretty much everything I did when I had my 2 girls. It's totally crazy.

  • Dawn41
    Dawn41 Member Posts: 54
    edited May 2016

    Wishing you a speedy recovery and will be thinking of you Friday.

  • msphil
    msphil Member Posts: 1,536
    edited May 2016

    hello all i was diagnosed at 42 while planning our 2nd wedding wanted lumpectomy opted for mastectomy Praise God now a 22 yr Survivor hang in there HOPE n Positive thinking got me thru just had annual mammogram last wk Thank God normal for right breast. msphil idc stage 2 0\3nodes L mast chemo n rads n 5yrs on tamoxifen.

  • Shirlann45
    Shirlann45 Member Posts: 3
    edited May 2016

    Hi, I am an 18 year survivor with Triple Negative Medullary cancer. I had a lumpectomy and radiation. I worked the whole time and was scared silly, but not any more. 83% of bc's are curable. Hang in there and keep posting and soon you will be helping others. Gentle hugs, Shirlan

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