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Just diagnosed today

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emstein
emstein Member Posts: 24
edited December 2021 in Just Diagnosed

Hi all,

I wanted to introduce myself here. I did have a thread going before I knew my diagnosis and the women there were so supportive and caring. I'm 43, a mother of 6 year old twins, and I was just diagnosed with IDC this morning after a mammogram, ultrasound and biopsy. My tumor is about 1cm around, HR+, HER2-, and grade 2. (think I got those acronyms right!) The ultrasound didn't find any indications of lymph node involvement and the biopsy report said "lymphovascular space involvement is not detected". I know lymph node involvement can't be confirmed until after surgery. I guess that's my next worry.

I have a history of health anxiety, with a specific breast cancer phobia, so that aspect of this journey is going to be tough.

So anyway, I just wanted to say hi, thanks for the support I've already received, and hope that when I'm in a better place emotionally I will be able to support others on here as well.

One other question- I had my breast biopsy done on Friday. The spot feels a bit tender still and there is bruising but the radiologist said it was healing nicely at my consult this morning. Is tenderness in your armpit after a breast biopsy normal? I didn't have any before the biopsy and it just feels a little off...almost like when you have an ingrown hair in your armpit, but I can't find anything. Just trying to calm my nerves about lymph node stuff.

xo emily

Comments

  • windingshores
    windingshores Member Posts: 160
    edited December 2021
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    I had similar soreness after my biopsy. Your tumor is not large so I would be hopeful about no lymph node involvement, and much of your news is heartening, HER2-, ER+, no lymphovascular invasion seen.

    Your doc will have an Oncotype Dx test done (or Mammaprint) and that will determine whether chemo would help or if you "just" do hormonal meds. If you have mastectomy you can avoid radiation but with lumpectomy radiation is likely.

    When is your surgery?

    I had a 1.5 cm tumor, grade 3 with lymphovascular invasion but low Oncotype so I just did hormonal meds. Still okay 7 years later knock on wood.

    Sorry you are dealing with this, and with young twins too.




  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 155
    edited December 2021
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    so sorry you find yourself here. I was diagnosed back in March, you can see all the details below. I’m headed in for my exchange surgery next week.

    One of the best things I did for myself right away was ask for a therapist. My nurse navigator suggested a wonderful woman who has devoted her career to helping cancer patients only.

    I’ve struggled with anxiety in the past. Seeing the therapist helped me tremendously. I was able to process my breast cancer diagnosis but keep on living. Last spring and summer (during treatment) I made a long time dream come true- I bought myself a camper. And we went camping in between chemo treatments.

    I had an interview for a job the day I had my head shaved and my wig fitted. And yes I got the job.

    It’s not to say that I didn’t have dark days because I did, it’s that all my days were not dark. so when we look back on this time we have lots to remember.

    Hang in there. The beginning is the hardest part. It gets better with a plan and when treatment begins

  • msphil
    msphil Member Posts: 185
    edited December 2021
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    sweetie we are here for you and feel your anxiety things will ease as you go treatment plan in place. I had my cry then held on to Hope and Positive thoughts. I was 42 planning our 2nd marriages when found lump. But Praise God got thru it All now this yr a 27 Yr.God Survivor and our 27 yr wedding Anniversary. msphil idc stage2 0/3 nodes 3mo chemo before after Lmast got married then 5yrs on tamoxifen. Hold on sweetie.

  • jons_girl
    jons_girl Member Posts: 444
    edited December 2021
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    So sorry your joining us here emstein. I had IDC too. My tumor was small. Caught early very thankful. Sounds like yours was caught early too! That is good.

    I chose only surgery for my treatment Still monitoring every 6 mo with diagnostics, so far so good

    We are here for you. I too struggle with anxiety in life. So I understand. Just chat anytime. We are here for support. Sending a hug to you. Tsm

  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Thanks for the replies everyone! I am feeling the love.

    Winding shores- I am meeting with my surgeon today so hopefully I'll have a better idea soon of the schedule of things. Hopefully learning more from them about my options for a lumpectomy or mastectomy...feels like kind of a big decision but I also want this thing out of me asap.

    Monarchandthemilkweek- thanks for the advice to find a therapist. I didn't know there were therapists specifically for cancer patients. I have an appointment with my primary this morning and will be talking to her this morning about a more long term anxiety med.

    msphil- thank you so much for the support. I grew up in a philly suburb and have a lot of family in Delaware County. Small world.

    jonsgirl- thank you. It feels so strange that my anxiety has me frozen in time but life still goes on. I had my biopsy (and found out that day that it was bi rads 5) on the same day my daughter was "star of the day" in kindergarten. Just juggling the weight of it all is overwhelming at times.

    The whole process has been flying at record speed. Last Monday I had my screening mammogram, last Wednesday I had my diagnostic mammo and ultrasound, last friday I had my biopsy, on Wednesday I learned of the results, and today I meet with the surgeon. This is SO good because waiting would be terrible with my little anxiety monsters running rampant in my head. But also that's A LOT to process in a week and a half.

    I'm feeling slightly nervous about my surgeon appointment today- not sure why. What can I expect?

    xo emily

  • moderators
    moderators Posts: 8,091
    edited December 2021
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    Emily, we're thinking of you! If it helps, take a look at the article What to Expect With Any Surgery from our main site, where you'll find the basics on what you'll experience with any surgery. Please come back to let us know how you're appointment goes.

    Best,

    The Mods

  • wondering44
    wondering44 Member Posts: 260
    edited December 2021
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    Hi Emily,

    Your concerns over lymph node involvement are normal. I think most or all of us feared it. My scans showed no enlarged lymph nodes, and I still feared it until the surgery confirmed that cancer hadn't spread to the nodes. My tumor went from 2.2 cm at the biopsy to 8.5 cm after the surgery. Still, there was nothing in the nodes found even with that tumor size.

    I see a therapist twice a month, and she has been fantastic throughout the process. I also met with a cancer nutritionist and did a total diet change since my cancer is hormone-positive, and that has helped.

    You are correct. You will not know about lymph node involvement until surgical pathology comes back. The stress of waiting for results is excruciating. Once you meet with your MO and get a plan in place, the stress should start to lessen. I found the most resolve was after I got the path from surgery. Since the surgery path results, I have spent most of my days working to enjoy life and complete anything fun I never made time to do because I thought I was too busy. Hindsight is 20/20, as I have heard. :-) The stress and fears get better once the "waiting for the results" is over.

    You will get through this as difficult as that seems today. Don't stress the "stressing part" either. What you are going through is normal. You will ride the cancer roller coaster of emotions for some time. Don't let anyone convince you that you should not ride it at any speed you choose.

  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Hi,

    So I met with my surgeon yesterday. She went through all of the details of the pathology report and did a full exam. She didn't find any concerning lymph nodes during the exam on the right, left, armpits or up to my neck. Phew!

    She then explained that she's guessing that I'm at stage 1A, (although not confirmed) and went through the different treatment options. I have to decide between a lumpectomy with radiation or a mastectomy (with no radiation). Definitely estrogen blocking meds (not sure what they are called) and chemo is not off the table until we get the lymph node biopsy back. I have an appointment with a plastic surgeon to go over options in case I go with the mastectomy route. And then have a follow up with my surgeon on my birthday (happy birthday to me) to go over the genetic testing results and decide what surgery I am opting for. Maybe those results will help me decide.

    So many questions and things to think about, especially because I find comfort in scientific fact and have been researching recurrence and prognosis outcomes, etc. My head is swimming a bit at the moment. But I do have some initial questions for you wise ladies:

    1. I am seeing a lot of posts on here about Oncotype and Mammaprint test results dictating treatment. But these tests seem to be done on tumors that have been removed during surgery. The genetic testing I had done yesterday was a blood test. What's the difference? Can I expect an Oncotype test after surgery? And doesn't that dictate the type of surgery that's best, but after the fact? So confused!

    2. As I've stated, I'm nervous about lymph node involvement, but I am also nervous about any hidden lurking cancer in my body now, since I know my body is a happy environment for cancer to occur. I keep reading posts about women who have similar details as me, opting for mastectomies, only to find out post surgery that they had more lymph nodes involved, more or different cancer that expected in their cancerous breast, or newly found cancer in their other breast. Am I not being offered any other screening like PET scan CT can, MRI because the assumed stage I'm in? How do I know the lumpectomy is all I need if I don't know for sure where everything stands in the rest of my body?

    3. I am fully aware that due to this situation and existing breast cancer phobia, mammograms will ALWAYS be hellish. Is it standard protocol that mammograms for breast cancer survivors are always reviewed before you go home? It's the waiting that does me in.


    Ok, I'll stop there. Thanks!

    xoemily

  • minustwo
    minustwo Member Posts: 13,129
    edited December 2021
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    emstein - I posted the current, active chemo thread after another or your posts. It really did help me to "belong" to an active group going through the same things together. Here is the latest surgery thread.

    https://community.breastcancer.org/forum/91/topics...


  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Thank you so much, MinusTwo!

  • mle42
    mle42 Member Posts: 124
    edited December 2021
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    Hi Emily,

    R.e. oncotype and mammaprint - they are usually done with samples from surgery, but can also sometimes be done with the initial biopsy sample *if* enough tissue was taken. They need a minimum size chunk to do the testing. It's generally OK to wait and do with samples taken during surgery (lumpectomy or mastectomy) because these tests don't give you information on which type of surgery to choose, but tell you whether or not you are likely to benefit from chemotherapy. If you get a low score on oncotype/mammaprint, and fit the other criteria for these tests, studies have shown there is no benefit to adding chemo on top of hormonal therapy. The only time it would be really important to get the oncotype/mammaprint data before surgery is if you are considering doing neoadjuvent (before surgery) chemo. If you know that you want to do surgery first, then it's OK to wait and use the tissue removed during surgery for these tests. It is usually standard practice to order one of these tests, but you should definitely confirm with your surgeon that it will be done to make sure there aren't delays.

    Your second question (how to decide on which type of surgery, in the absence of MRI or PET scans) is really something you should talk to your surgeon about, since they know the details of your diagnosis and your other imaging. From what I have read, and what my doctors told me, there is no difference in survival outcome for lumpectomy + radiation or mastectomy alone. In either route, you will get a sentinel node biopsy to check whether there is any cancer in your lymph nodes. If lymph nodes are positive you may still end up with radiation after a mastectomy to target that area. There is often no "right" answer, and it can come down to personal preference. Some women prioritize wanting to be sure that there is nothing else suspicious in the breast and reduce their anxiety by having all that tissue removed with a mastectomy, or want to minimize their chances of needing radiation. Others prioritize keeping as much of their own healthy tissue as possible. I landed in the second camp, but neither is wrong! It's a very very personal choice. That being said, there may be details specific to your situation and medical history that make one option more appropriate than the other, and so advice from us on the internet (vs your doctors) should always be taken with a massive chunk of salt.

    Good luck in the coming days and weeks, I vividly remember how agonizing this period between diagnosis and deciding on/starting treatment was. These decisions are really, really hard to make, but you'll get there!

    -another Emily

  • tntnsd
    tntnsd Member Posts: 124
    edited December 2021
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    Hi Emstein,

    Big hug Emily; it is hard to go through all this.


    All your concerns/ worry are valid.

    For generic testing, it just to see if you has some genes with higher risks for developing BC and/or few other diseases. Many of us don’t carry BC-risk genes, and here we are! However, knowing it now, we can decide whether to take preventive approach going it again with the remaining breast.

    Lumpectomy +radiation or mastectomy is something only you can decide (after understanding all variants in your diagnosis); but please note mastectomy does not necessarily mean no radiation. Sometimes it requires if there is not a clear margin or lymp node involved. And we only know that with post surgery pathology.

    I don’t think it is standard to order every scans unless there’s some suspicious that it has been spread. However, I am a bit surprised that MRI is not ordered for you by your doctor (mine put in order for that to see if anything else that we missed with mammogram and ultrasound). Talk to your doctor please, maybe he has reasons for that.

    You got this Emily. It is better in time. (I was a mess this time last year, one year later now is so so much better).

    T

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2021
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    The following thread might help you decide which surgical option is best for you. Take a look at the research info and the list of considerations in the opening post, and then scroll down to the very last post in the thread on the second page; the website and information from melbournebreastcancersurgery.com.au, linked in that post, is by far the best I've found.

    Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

    https://community.breastcancer.org/forum/91/topics/868997?page=2#post_5665953



  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Just a quick update- I have an appointment tomorrow with a plastic surgeon to go over options if I go that route and then shortly after, I've scheduled a breast MRI. Hopefully my genetic test results are back by Monday when I have a follow-up with my surgeon. I'm really hoping all three of these will help inform my surgery decision...which I hope to make on Monday. Thanks for the support so far everyone.

    emily

  • jons_girl
    jons_girl Member Posts: 444
    edited December 2021
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    emstein: I hope all is going well update us when you have time. Blessings

  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Thanks for checking in, Jons_girl. :) So I have a bit of an update. My genetics test has not come back yet and won't be back until 12/24. So my appointment today to discuss and schedule surgery is cancelled. I'll be having a telehealth appointment on 12/30 to discuss the results of the genetic test.

    The amazing news is that my MRI results came back, and while the tumor is .5 cm larger than what was seen on the ultrasound, there is nothing else going on in either breast and my lymph nodes continue to look good. (!!!!). Best birthday present ever. There's a cyst in my left breast that apparently everyone knew about but me...but no one is worried about that.

    So, unless the genetics test come back with something that changes surgery plans, I'll be having a lumpectomy on 1/4. Pre-surgery stuff happening on 1/2 and 1/3. Which means we can still keep our travel plans to see family over the holiday break. I'll take any good news these days. And I'm so relieved about the MRI. A little more peace of mind going into the new year.

  • emstein
    emstein Member Posts: 24
    edited December 2021
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    Still hanging in there, still having weird dull pain in my right cancerous breast. Could it still be from the biopsy? Could it be from the titanium clip?

    In fact, I am super conscious of every ache and pain in my body right now. I've heard this is common after a breast cancer diagnosis. Ugh.

    One question- I've had pain in my left hip since late 2018. It comes and goes and of course it's happening right now. I feel it only when I'm moving around, it doesn't wake me up at night, tylenol takes care of the pain, and my hip and back sort of making clicking sounds when it's moving and hurting. Mammograms from 2018, 2019, 2020 were all clear of cancer and my current tumor is 1.5cm, grade 2, with no lymphovascular invasion. In the back of my mind, I'm worried about mets. This is irrational, right? My rational brain is sure this is arthritis or some funky thing from years of ballet. But my anxiety brain can't let this go.

  • aram
    aram Member Posts: 320
    edited December 2021
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    emstein, my tumor was painful. Also there was added pain from biopsy for a while.

    About Mets, based on what you are saying the chances are low but if I were you I would mention it to the MO.

    Good luck.