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Diagnosed Yesterday

StonedPony
StonedPony Member Posts: 12
edited March 2022 in Just Diagnosed

Found out yesterday- no phone call, just logged into MyChart to ask my GP for an unrelated medication refill and I saw the results of the biopsy.

Invasive Ductal Carcinoma, Grade Two.

Today the info on MyChart was updated to include these details:

ER Positive 95%, PR Positive 95%, HER2 Negative. Ki67 15.

I haven't spoken to any health professionals yet but have an appointment with a breast surgeon at Georgetown Lombardi Cancer Center tomorrow afternoon.

I was relieved to be highly hormone positive but that Ki67 score looks scary and aggressive. I also know Grade 2 is pretty bad as well.

It turns out the biopsy results were posted on Saturday! Thankfully I didn't see them until Wednesday morning-- that way I was able to enjoy my first few days with my new chihuahua. In addition to my new pet I have a fantastic support system-- an incredible boyfriend, sister cousin and close friends all here in DC with me, parents only a few hours away. My very caring (but bossy) sister is pre cooking meals for me-- all organic, all vegan, insisting I stay away from alcohol and cheese. But I'm terrified.

Eliza


Comments

  • lw422
    lw422 Member Posts: 1,399

    Sorry about the diagnosis, Eliza. And what a crappy way to find out. (Not that there's a good way, mind you.) You'll settle in once treatment starts and the emotional roller coaster will actually smooth out as you focus on getting better. It's great that you have a wonderful support group and a new little furry friend to occupy you.

    My very best to you, and lots of hugs. (And don't give up the alcohol unless your doc says so.)

  • StonedPony
    StonedPony Member Posts: 12

    Thank you LW. Emotional roller coaster it is. I do wonder if my cancer is a result of years of way too much drinking (abused alcohol off and on until 39, I'm 41 now and still enjoy wine a few times a week.)

  • msphil
    msphil Member Posts: 185

    sorry find yourself here butt we know your feelings we ve been there. But once treatment plan in effect things will ease it did for me. Yes my fiance yes we were planning our 2nd marriages at diagnosis now husband Faith family friends were right there for me. So important support system come here when needed to vent we are here for you. For Inspiration in am a 28 yr this yr Survivor Praise God. msphil idc stage2 0/3 nodes 3mo chemo before and after got married then 7 wks rads and 5yrs on Tamoxifen.

  • minustwo
    minustwo Member Posts: 13,076

    StonedPony - it is NOT your fault that you have cancer. Do not start down the guilt trip road. The most likely cause is that "you are a woman".

    Also, I'm in favor of moderation - not giving things up entirely. No reason to go on a total austerity kick whatever your sister may think. Don't let her be the boss of you. You have enough worries w/o depriving yourself of a few comforts. So maybe just cut back to one glass of wine a day and add a serving of broccoli.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,745

    Darn, I’m sorry to hear this. Try to focus on what you know for certain right now and try to stay away from the what ifs… I’m so happy that you got your chi! Focus on him 😊

    I second what minus two said about moderation in diet. I went through a compulsive phase with my diet and my younger dd took her support roll a bit too far. Food should never be a battlefield. Moderation made us all happier! Take care

  • rah2464
    rah2464 Member Posts: 1,192

    StonedPony - we just don't have all the answers as to why some of us get cancer and some don't . What you eat (or don't eat) or drink has very little to possibly no bearing on whether or not you get cancer. It really is a crapshoot so don't blame yourself. Sorry you have gotten the diagnosis but we will walk with you one step at a time.

  • juju-mar
    juju-mar Member Posts: 200

    StonedPony,

    So sorry you are here, but the good news is you have the most common type of BC - many, many women have had this and are living cancer free for many, many years. As for Ki67, from what I understand, anything over 25% is concerning. You are good with 15%. I was diagnosed Aug 2020 and am currently cancer free. Treatments have come a long way. Believe you will be ok, be positive, cry when you need to, but then pick up and move forward.

    Julie jujuscancerjourney.Wordpress.com

  • moderators
    moderators Posts: 7,896

    Eliza, we're sorry to hear such unwelcome news. As you can already see, you're in good company and you'll find support and encouragement here.

    We would recommend you to take a look at our Resources for the Newly Diagnosed section for good info that hopefully will help you understand pathology reports, weigh treatment options, and manage the ups and downs that so often goes along with a breast cancer diagnosis.

    Please Please keep us updated on how everything is going, we're thinking of you!

    The Mods

  • StonedPony
    StonedPony Member Posts: 12

    Thanks so much everyone! Already the support I've found here is helping a lot. I have appointment with breast surgeon in a few hours--- hoping it goes ok and I don't get any shocking news.

    Eliza


  • sunshinegal
    sunshinegal Member Posts: 67

    Sending positive energy your way, Eliza! This community has been incredibly valuable to me over the years. You're in the scariest part - things do really get better once the treatment plan is in place.

  • jo-jo2018
    jo-jo2018 Member Posts: 139

    StonedPony, so sorry to read your news, you got this girl we are all here for you.

    Let us know how your appointment with the breast surgeon goes

  • jons_girl
    jons_girl Member Posts: 444

    hi Eliza:

    Don't let your sister discourage you. Yes it's always good to eat well. But I'm vegan. And I also don't drink alcohol at all. And I got breast cancer. I think stress also plays a role in breast cancer. As well as many other environmental things that can cause disease. Also genetics play a role too. So like the others here who mentioned not to be blaming yourself,I'd agree with that. Cancer isn’t your fault

    We are here for support.

    Here is some info on this site that talks about the ki-6 info:

    Your pathology report may include information about the rate of cell growth — what proportion of the cancer cells within the tumor are growing and dividing to form new cancer cells. A higher percentage suggests a faster-growing, more aggressive cancer, rather than a slower, "laid back" one. Tests that can measure the rate of growth include:

    • S-phase fraction: This number tells you what percentage of cells in the sample are in the process of copying their genetic information, or DNA. This S-phase, short for "synthesis phase," happens just before a cell divides into two new cells. A result of less than 6% is considered low, 6-10% intermediate, and more than 10% is considered high.
    • Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%.

    Although the S-phase fraction and Ki-67 level may provide you and your doctor with useful information, experts don't yet agree on how to use the results when making treatment decisions. Therefore, not all doctors order these tests routinely, so they may not appear in your pathology report. The other results in your report will be much more important in making informed choices. (If you decide to have an Oncotype DX test to check the likelihood of cancer coming back and whether you could benefit from chemotherapy, Ki-67 will be included in that panel of testing.)

  • odyssey305
    odyssey305 Member Posts: 37

    Eliza, so sorry to hear about your diagnosis! Sounds like the ball is rolling for surgery, which is great. You'll also get a referral for a medical oncologist. You may want to schedule an appt with the MO before surgery just so you can start that relationship and ask more questions. I personally found that helpful even though I guess it wasn't the standard order of things.

    I'm a relative newbie myself, but I consider the point between diagnosis and starting treatment to be the second circl of BC hell (you've already passed through the first which is waiting for biopsy results). It's perfectly normal to feel anxious and scared at all the unknowns. Try to distract yourself and focus on things that bring you comfort. Know that all the pieces will come together soon, and as others have said, having a treatment plan in place reallydoes help. Someone posted that you don't have to be brave, you just have to show up. Truer words were never spoken. We're here to help you through this. Hang in there.

  • alicebastable
    alicebastable Member Posts: 1,939

    Sorry you have to join us, but it's a good place to be in spite of the crappy initiation rites. I found it mentally helpful to do a lot of fun things between appointments, tests, and surgery, to stockpile good memories for future me.

  • StonedPony
    StonedPony Member Posts: 12

    Thank you so much everyone! I feel so overwhelmed by this. This lump has been sitting around forever. though weirdly enough, the breast surgeon I met with yesterday said that didn’t necessarily affect my prognosis and that the pathology was more important than the size of the lump— which is at least 3cm. My next steps are breast MRI, meeting with their plastic surgeon as they figure out the best surgery options for me. I’m a 34 A with a pretty big lump, so plastic surgery will be needed for a good aesthetic outcome. The breast surgeon explained that she will biopsy lymph node during surgery; and send the tumor for oncotype testing. So I won’t know oncotype results until after surgery is complete. Is this typical?

    My anxiety has made it so hard for me to eat, even though my wonderful sister has prepared all these healthy vegan meals for me. I feel lightheaded. I’m convinced I have brain Mets. I mentioned this to the surgeon yesterday and she said brain metastasis was unlikely in my situation, but I kind of don’t believe her. She also assured me that my Ki67 of 15 was not high, and that being highly hormone positive was good.

    She is going to discuss my situation with the tumor board, which is standard for Georgetown Medstar. Medstar seems like a very good research oriented place, but I feel like I should get a second opinion at Sibley? I’m so overwhelmed, I keep feeling like I’m not going to die in the next two or three years.

    I just can’t see how I could have a good outcome, with this giant lump festering in me for so long. It seems a given that I would have multiple metastasis, and that will be the bad news that unfolds after the breast MRI. The guilt of not having this lump checked out once it really began to change (almost a whole year ago) is overwhelming.

    I’m so sorry to go on and on like this! I’m trying to keep it together for the sake of my sweet new dog and my boyfriend and friends and family but it’s hard.

    Eliza


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,745

    Eliza,

    I realize your anxiety is probably at an all time high and there may be little I can say to alleviate it. Please note that is extremely unlikely you will die anytime soon. Additionally, only about 6% of those who are newly dx'ed are already metastatic so again, the odds are overwhelmingly against you having mets!

    I agree with your mo about the size of your tumor so don't dwell on that. Unless you have training in oncology, I am baffled as to why you wouldn't believe her that brain mets are extremely unlikely. Overall, breast cancer is relatively slow growing.

    Please,please, please focus on what you know presently to be true. Focusing on what might happen in the future or what you could have done differently in the past is just spinning your wheels and will change nothing at all. I know that this mind shift is not easy. It will take time, practice, and professional help as needed but will be in the best interests of your health in the long run.

    I'm glad you have family and your new “baby" to help. What's the little guy's name?

  • odyssey305
    odyssey305 Member Posts: 37

    Hi Eliza, like your surgeon explained, doctors consider the other features of a tumor to be more predictive and prognostic than just size alone. This will all be determined after surgery, same as your Oncotype. Throughout these boards you'll find many examples of women with large tumors withou node involvement or other spread. In my case, my MO suspects that my tumor had been there for a long, long time, but for reasons we don't quite understand, wasn't detected until now. BUT because of several “favorable" features and no other symptoms, she isn't concerned about distant spread, even with micromets in 1 node...

    I guess my point is, try not to go down the rabbit hole of imagining worse case scenarios and definitely don't blame yourself- you did nothing wrong (there's no guarantee an earlier mammo would have changed your treatment). I know that's easier said than done, but lean on your support, it helps. And if you need more direct support, don't hesitate to request a referral for therapy, it can be a lifeline. Having your case reviewed by the tumor board will hopefully give you peace of mind, but getting a second opinion is always an option too. At the end of the day, it's your body, your treatment, and there's no one size fits all so get as many opinions as you need. After getting over trying to be a good patient (that's a conversation for another time), I insisted on a case review and it gave me the confidence I needed to move forward, hope it does the same for you.

    Take a deep breath, you'll get through this. Sending hugs.

  • StonedPony
    StonedPony Member Posts: 12

    Exbrnxgrl— My new chi’s name is Eli!

    image

    (There’s a lipstick mark on his head from my friend kissing him)

    My anxiety truly is at an all time high. Actually, your comment did help— why would I know more than a breast surgeon? It’s actually very helpful for me when people point out that I’m being irrational.

    Normally I would use cannabis to ease a stressful situation like this (I have a MMJ card for chronic pain) but I recently read that THC is highly estrogenic so haven’t used it since my biopsy. I migh give myself a break and use some.


    Odessey— thank you for reiterating that this isn’t my fault (I often need to hear the same thing several times). There's all this emphasis on early detection, which has caused me to spiral in guilt and fear. And thank you for sharing your experience with tumor size. It’s helpful and reassuring.

    I am very grateful for this community.


    Eliza

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,745

    Welcome, Eli! Pumpkin welcomes you as well. The pic didn't post ☹️.

    Cannabis and cancer… the evidence that THC may effect ER+ bc is still unclear. This part of the conclusion from research (will post a link to the entire article)

    “The interactions between HR+ BC and cannabinoids are complex and the clinical significance of such interactions is currently impossible to predict. Use of cannabinoids in palliative medicine is well established [], however clinical trials are needed to determine safety of cannabinoid treatment in other BC settings. Until further evidence is available, caution should be exercised by physicians and patients when using cannabinoid preparations in a HR+ (as well as in any other) BC setting.“

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7139952/

    Please note that it states that interactions are currently impossible to predict. I definitely think you should discuss cannabis use with your mo. My mo has no concerns about my using cannabis but if you feel at all uncomfortable with the idea then don't use it. I am a daily user. I use it for pain relief and appetite stimulation. We have a cannabis thread that you might be interested in:

    https://community.breastcancer.org/forum/79/topics/874792?page=5#post_5733621

    Of course, the really deep dive into the medical usefulness of cannabis will be hobbled until it is no longer considered a Schedule I substance. Take care.

  • alicebastable
    alicebastable Member Posts: 1,939

    I recommend chocolate cake! That always soothes me when I need it. And like I said before, do fun things. My goodness, you have a kiddo, there are tons of fun and silly things you can do!

    And avoid Dr. Google because he's a lying SOB with no medical degree.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Cheese is delicious and there's absolutely no reason to stop eating it now. It is very likely that stress and some treatments will affect your appetite, and the last thing you need is to worry about food. Try to eat a well-balanced varied diet, sure. But sometimes just getting calories into your body is going to be the most important thing. Sometimes the most important thing is eating something you love. Sometimes the most important thing is eating the one thing that still tastes good and that's it...for days.

    Tell your sister to make you the food you want and need, not the food she thinks you should be eating. And don't stress over not wanting to eat what she makes.

    Also! Me and my family have lots of experience with many of the DMV hospitals and breast cancer related doctors so send me a private message if you want to chat about specifics.

  • glitzykismet
    glitzykismet Member Posts: 1

    Hi!

    Oh boy, Eliza, do I ever relate to your posts! I was diagnosed with breast cancer at the beginning of February, after a routine mammogram in January showed a small (8mm) tumor in my right breast. Less that a month later, I underwent a lumpectomy and sentinel node biopsy. They pathology report indicated that one of the three lymph nodes the surgeon removed shows micrometastases. I have my initial meeting with a medical oncologist in about a week and a half.

    I have been feeling like an emotional tornado since getting the initial biopsy identifying the cancer. Mostly anxiety. My brain has a tendency to play out all the possible worst-case-scenarios and what-ifs. I am frequently second-guessing the treatment decisions I've already made, like should I have had a mastectomy instead of the lumpectomy. I doom-predict that my choices have relegated me to the worst possible follow up treatment (not that I even know what my follow up treatment will be, yet!). I sometimes just start crying at the smallest of triggers. I've discussed it with my primary doc, and she gave me some medications to help. The meds have definitely taken the edge off the anxiety and I don't feel quite so "raw," but I still have ALL the feels, ALL the time! I joined a message-board style breast cancer support group, but it's not very active. I will be starting a Zoom based support group tomorrow, and hopefully it will be more helpful to have real-time interaction and feedback.

    I really am so appreciative of all the folks who participate in this community. It really is helpful to read all the posts.