Just diagnosed - trying not to fall apart

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salasila
salasila Member Posts: 41
edited June 2017 in Just Diagnosed

I have been lurking around this site for almost 2 weeks .... finally decided to post after receiving my diagnosis yesterday.

Started out with regular annual screening - and I opted for 3D (for the first time, at the suggestion of my OBGYN's RN). Doc saw something he didn't like when the results came back, so he ordered a diagnostic mammogram and ultrasound. Again, results came back with something he didn't like so he ordered a biopsy. Had to suffer thru Memorial Day weekend while waiting on the results. Got the call yesterday and was set-up with a meeting with a Breast Surgeon to discuss results.

Basically, its Left breast, 1cm, Stage 1, IDC, ER+/PR+/HER2 ? (they need to do the FISH). The Ki67 (MIB-1) is Intermediate <-- BS says this is a better indicator than just "grade" ... is this true?

We talked options yesterday, between Lumpectomy and Mastectomy and Bilateral Mastectomy (I hope I got this right - I'm so new to the lingo). She says because of my age (barely 46) and no family history of cancer (that I know of), she will get genetic testing done (had my blood drawn yesterday). We talked about post surgery treatments, etc.. I honestly zoned out quite a bit but BS said no worries and to call/come back anytime I want to talk more. But she set up an appointment with the Plastic Surgeon next week because she says we can schedule surgery as soon as the team finds the first available date. They're all at the building and I feel it makes the process much more efficient and less frightening. My husband wants a second opinion - I'm not sure its necessary?

Anyway, I'm so beat up. I feel like I've just been trashed by an 18-wheeler already. Looking for some company here, I guess ....

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  • KSteve
    KSteve Member Posts: 486
    edited May 2017

    Salasila - This is without a doubt the scariest part of the entire cancer journey. Once you get your treatment plan and have all of your medical team in place, you will begin to get in "fight" mode. Not having all of the answers yet is tough. I highly recommend you take someone with you to all appointments because it's natural to zone out. It's so much information at first. Also bring a pad of paper. This is a great site with lots of caring supportive people so don't hesitate to ask questions anytime. You can do this!! Just take it one day at a time. Just want you to know that you are not alone.

    Hugs,

    Kathy

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

    Salasila, welcome to Breastcancer.org!

    We're so sorry you have to be here, but really glad you found us. As KSteve mentioned, you're at the toughest part of your journey, when there are so many unanswered questions. Please know you've found the best place for answers, support, and advice. We're all here for you, as you can already see!

    It sounds like you have an excellent medical team looking out for you, helping you make informed decisions. We know it can be overwhelming trying to get answers. At the main Breastcancer.org site, we have a page on Questions to Ask Your Doctor About Your Diagnosis to help you get as much info as possible. The Your DIagnosis section itself is also very informative about all of the different aspects of your pathology report, and what it means for treatment.

    We hope this information is helpful, and we look forward to hearing more from you soon and supporting you all the way!

    --The Mods

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  • MARIONSGIRL
    MARIONSGIRL Member Posts: 59
    edited May 2017

    Salasia, as far as a second opinion, are you comfortable and happy with your surgeon? Are you having a mastectomy? I agree that you should take someone with you to take notes etc. I can't remember a lot of what I was told in the beginning and took a friend with me for my teaching appointment before I started chemo. You're not alone on the site. Take care, Maryellen

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  • ravzari
    ravzari Member Posts: 277
    edited May 2017

    Did your husband tell you why he wants a second opinion? Is he looking for a second opinion on surgery options or on the diagnosis itself?

    If it's on the diagnosis itself, it's possible he's simply not dealing with the news very well and has decided to try denying it (i.e. 'the doctor must be wrong') in an attempt to avoid the reality of the situation, and getting a second opinion just to make him feel better likely wouldn't do any good as the results of a new biopsy are likely to come out exactly the same as the first one and it would just delay starting treatment plans unnecessarily.

    If you haven't discussed with him why he's asking you to get a second opinion, it may be a good idea to do so.

    If he wants a second opinion on what type of surgery to get, that's honestly your call 100% to make unless your doctors have a good reason to insist on one option over the other (like, in some cases, they can't get clean margins on a lumpectomy so a mastectomy may be necessary). Some women prefer a lumpectomy, where others prefer to just have the affected breast removed, and some prefer to have both removed; there isn't necessarily a 'right' answer there just as there isn't a right answer as to whether or not you reconstruct or not after a mastectomy.

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  • VL22
    VL22 Member Posts: 851
    edited May 2017

    Hi salasila,

    It's draining, isn't it? I'm sitting here waiting to get a callback with my surgery date - was supposed to be 5/18, but a bad MRI led to a biopsy and a bone scan. It just seems endless. I did get a second opinion and even though nothing changed, I felt more comfortable with the second team. I was diagnosed early May, on my birthday - 45th. It took me about 2 weeks to not be in shock. I also zoned out during appointments. I'm less anxious now because of the great women here - I'm focused on living this moment and not letting fear control my day. I have breast cancer and it sucks, but I need to keep on keeping on! It is so hard sometimes, but what's our choice? Not googling has greatly improved my mindset.

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  • salasila
    salasila Member Posts: 41
    edited May 2017

    Thank you for such quick and kind responses. I am new at navigating the site so I didn't know I had replies to my post or how to get back to my post ---- I was searching for this SBR score (I am 8/9 :( ) and I understand now that means I'm Grade 3 .... and it says in my report I have High Nuclear Grade, High Histologic Rate, Tumor involves all cores ..... I just keep seeing my kids' faces as I read BAD BAD BAD written everywhere ... sigh

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  • salasila
    salasila Member Posts: 41
    edited May 2017

    ravzari: I think my husband wants a second opinion "just because". Maybe its a confidence factor, to have someone else confirms it. Frankly, I think its a waste of time because I want this thing out of my body, like, yesterday. I brought it up here, I guess, to see if anyone else have had the need to seek a second opinion and if anything changes after that. I'm comfortable with the BS; I'll meet the PS on Monday but I've read about him (and briefly trolled both him and the BS on the internet). I just feel like time is of the essence ... am I being stupid?

    With regards to the type of surgery, I am almost sure I want a mastectomy on both breasts (even though the cancer is only on the left). I don't have a sentimental attachment to my breasts and I'm sure the plastic surgeon can make something just as cute to make-up for the loss. I just don't want to go through this again .... on the other breast. That's the other thing I need to read up on ... women who are doing double/bilateral mastectomy .... any opinions? thoughts? experience? Gosh I feel like I have SO much to read up on and learn, its all so overwhelming....

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited May 2017

    salasila, sorry your found yourself here. This is an emotional time. Try to gather all of the information you can to make an informed decision...rather than a knee-jerk fearful reaction. We all know that is easier said than done. Does your medical facility have a "tumor board"? Your comment about wanting it out asap resonated with me...I remember feeling the same way when i was DX'd. Remember, BC has probably been in your body for a while. Most likely, a few weeks is not going to change anything. It could take 2-3 wks for the genetic tests to come back. The results may weigh on the advice of your Dr's. A lumpectomy usually calls for radiation. A mastectomy may or may not. .Either way, I wish you well with your up-coming treatments, whatever you decide.

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited May 2017

    salasila

    It is overwhelming to find out this information. You will have a far better plan once the HER2 comes back. Then they might do an oncotype to find out if Chemo is warranted. My diagnoses was such that they could not save my breast as I had DCIS all through it. I did go through the reconstruction process with an implant but some choose the DIEP route where they take fat and make it into a breast. I just want to give you a bit of a heads up.


    In the reconstruction route there is nipple sparing and nipple reconstruction. also some women are really happy with their new breast. Just be prepared that when they do a mastectomy they try to take all the breast tissue so it looks different then that nice bouncy breast feeling that is natural. I can't speak to DIEP but my reconstruction is OK but nothing I would whip my shirt off and run around. I do miss my natural breasts. My new ones do not fill a bra like my natural ones. I had started out really wanting a lumpectomy and radiation but it for me it wasn't possible. Just make sure you really really really have confidence in your Plastic surgeon and have very realistic expectations.

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  • TSmith76
    TSmith76 Member Posts: 3
    edited May 2017

    Our stories fall fairly closely in line Salasia...I w received my diagnosis on May 22nd and am syill waiting on definitive answers regarding Stage / OncoType / Treatment...I have a surgical consult on June 13th and hopefully will have my genetic testing results by then. I'm still a bit in shock...didn't expect a cancer diagnosis at 40...

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  • ladinred26
    ladinred26 Member Posts: 28
    edited May 2017

    I am in the same boat as u. Had tests done last week and had the interminable wait over Memorial Day weekend. Found out this afternoon that I have invasive lobular carcinoma. Don't know anything else yet. Have an appt with surgeon next Wednesday so the wait and see game is back on for me. Sending u a big hug!!!

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  • Lastthingiexpected
    Lastthingiexpected Member Posts: 12
    edited June 2017

    Hugs to all. This site is a great resource. This August will be one year since my diagnosis. I felt everything you have described. You are not alone.

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