Seeing breast surgeon July 3rd -- really scared!

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tapestry
tapestry Member Posts: 8
edited July 2017 in Waiting for Test Results

Hiya everyone.  I am 59 years old.  I have mammograms done once yearly with the last one having been in September 2016.  They have all been fine, however, I was told I have very dense breast tissue.


At any rate, my story here started only last Thursday, June 22nd, when I had a regular 6-month visit with my family doc.  While she was checking my breasts, she noticed a large, hard lump in the outer quadrant of my left breast near the armpit.  She had me feel it and it was hard and felt like the size of a golf ball, and I wondered how I could have missed it!  She checked my last mammo in Sept which said everything was fine!  She said she thought it was a cyst, but she wanted me to go to the hospital the following day and have a diagnostic mammo and a breast ultrasound.


I went to the hospital the following day and had both tests.  The mass/lump showed up on the mammo and then I went to have the ultrasound.  The ultrasound tech took her time with the screening and the measurements and was very kind.  She asked me if I had a family history of breast cancer, and I told her that my grandmother had it and had a double mastectomy.  She asked if it was my maternal grandmother, and I said yes.  As she was checking me, I could see the mass on the monitor, however, every time she needed to get out of her chair to get something, she would turn the screen away from me (which really unnerved me), and when she was finally done, since it was on a Friday (just last Friday!), she asked if I wanted her to call my family doc to talk to me so I wouldn't worry the whole weekend.  I said that would be fine, so she did.  When she put me on the phone, the doc said to me morosely "it's not a cyst" and said I needed to see a breast surgeon right away for further evaluation.  I had driven there by myself because my husband had a procedure that morning at the hospital, and I had to take him home before going back for my tests.  So as I was walking out of the office, the tech said she was really sorry and asked if I had someone to drive me home.  When I said no, she said I should sit down before attempting to drive.  I didn't sit, though, and just walked out of the hospital hurriedly, got into my vehicle and starting bawling and cried the whole way home as the way the tech acted coupled with the doctor ominously saying definitively that it was not a cyst made me pretty sure the diagnosis was breast cancer.


My appointment with the breast surgeon is this Monday, July 3rd, and I'm so scared because after having looked into further info on breast cancer, I find I have most, if not all, of the risk factors including my family history, I am postmenopausal and obese, I have very large breasts, I am retired and pretty sedentary as I have knee problems, and the breast mass/lump is hard and large and doesn't cause pain.  I am pretty sure the diagnosis will be cancer and am worried sick about it, however, trying to brace myself for the diagnosis.


In the meantime, it is very, very difficult waiting for July 3rd with not being able to sleep, crying all the time, being just scared to death!  How do people handle the waiting?


I am sorry for blathering on, but am hoping to at least have some people to talk to who would understand what I'm going through.  My husband is, obviously, very concerned and trying his best to calm my fears and distract me with movies and things to keep my mind occupied, but it's just so nerve wracking and upsetting that I can barely function!


Thanks in advance for taking the time to read this tome.....



Comments

  • SharonRose2017
    SharonRose2017 Member Posts: 40
    edited June 2017

    I am so sorry to hear this. Oh, I know what torture the waiting brings. Do you feel comfortable asking your family doc for some anti-anxiety medication like Ativan? It's for short term, but will maybe help you feel calmer over the weekend. I am saving mine for the excisional biopsy I know is happening in a month or two for me. But my MD was understanding and helpful in giving it to me right after my stereotactic biopsy. I did keep super busy all the time until I got the pathology result last evening. It helped. I am sending my very best for calm and peace for you as you go through your appointments.

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

    Hi tapestry, and welcome,

    We're so sorry you're here and worrying, but glad you found us. We're all right here for you, no matter what the results! We're sending our most positive thoughts and wishing for the best. Please keep us posted, and try to keep calm and occupied. You'll get lots of support here.

    --The Mods

  • illimae
    illimae Member Posts: 5,710
    edited June 2017

    I was in a similar situation last November and ended up being diagnosed at age 41. I was angry, stunned and cried a lot for the first couple weeks but once a plan was in place, things got better. Considering the size of your lump and how quickly it grew, I would recommend meeting with an oncologist before committing to surgery, if it does turn out to be cancer. We can't help worrying but never forget that you are stronger than you think.

  • tapestry
    tapestry Member Posts: 8
    edited June 2017

    Thank you to the mods and others for the kind words of support and the helpful suggestions.  I am so thankful to have found people on here who understand what it's like to go through this.  I am trying to feel strong and optimistic, and my husband keeps saying to me "we got this", but right now I'm feeling so completely overwhelmed by the prospect of having breast cancer that it's hard to breathe sometimes.  I know everyone on here understands, and that really helps.  I will keep everyone posted when I find out more information.


    To Sharon Rose:  Thanks for the suggestion of the Ativan and for the well wishes.  I haven't asked my doctor about prescribing anything like that yet, but if I get a positive diagnosis in a few days which I'm trying to prepare myself for, I may ask her for some type of help in the form of anti-anxiety meds.  For now, I use wine. Happy


    To Illimae: Thanks for the good advice on contacting an oncologist before committing to surgery.  I will ask my family doc to refer me to a good oncologist if it looks like I'll need surgery if, in fact, I get a positive diagnosis next week.



  • mommakat
    mommakat Member Posts: 147
    edited July 2017

    Sorry you're going through this and best of luck! This waiting game is the worst.

  • tapestry
    tapestry Member Posts: 8
    edited July 2017

    Thank you, mommakat, for the encouraging words.  I've seen the surgeon since I made this post.  She did a biopsy and said we needed to wait until the end of the week for the results to know for sure if it's cancer.....but, she said in her experience, this looks to be cancer.....which is pretty scary.....so now I'm waiting to hear what type and what stage, etc., so she can come up with a treatment plan.  I'm tryin' to hang in there as best I can, but it's hard.....glad this forum is here for us......

  • Midwest_Laura
    Midwest_Laura Member Posts: 168
    edited July 2017

    Tapestry: I second what Illimae said.  If needed, get yourself a medical oncologist (MO) and possibly a second opinion before jumping in with both feet.  You will want to know all of your options and all of the risks before you finalize your treatment plan.  I know that the waiting is hard.  If the diagnosis is cancer, your instinct will be to remove the tumor as soon as possible.  But it might be best to consider neo-adjuvant chemo first.  Your MO will help you to understand what is best for you based on the biopsy pathology.  Keep breathing.  If the diagnosis is cancer, one more week of research won't change the outcome; but you will feel better in the long run for making confident decisions.  I'm sending virtual hugs your way.  Take care, and let us know how things turn out.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    I agree with Laura, a surgeon's first response will be to cut, but an MO can tell you if your treatment is better (better risk reduction) starting with neo-adjuvant chemo. Putting together a good team that you like is important. Try your best to breath through the impulse to jump too quickly into treatment and make sure you understand you personal risk profile (based on your specific bc characteristics, your family history - genetic testing if appropriate, etc) and what interventions will provide you the most benefit and risk reduction considering your risk tolerance and potential other medical conditions. It will most likely take a couple of weeks (you'll need to get your full pathology back) and that is difficult waiting. Good luck and gentle ((hugs))

  • tapestry
    tapestry Member Posts: 8
    edited July 2017

    Thanks, Midwest Laura and MT Woman, for the information and for your kindness.  My doctor called me on July 6th and said it was indeed cancer.  However, she said it was not an unusual kind and said that was good.  She didn't say what kind it was, though, and I forgot to ask.  She said the grade was 2-3 and that it was 3 cm large in the left breast.  She also said the cancer was receptive to estrogen.  I'm not really sure what all this means, but she said she needs to get some more information; i.e., something about finding out about the proteins, to give me more information and she also needs to find out if they spread to the lymph nodes.  I am scheduled for a breast MRI on July 17th, and then I will meet with her on July 19th to go over a plan.  She said once she finds out more information about the cancer, she will refer me to a medical oncologist, and she said she would tentatively schedule me for surgery on July 27th.  I'm so completely overwhelmed by all of this and hoping I'm getting things straight, but it's good to know I can always come on here and get support and guidance which is very helpful.


  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    tapestry,

    I know it's a lot to take in at first. "not an unusual kind" coupled with estrogen receptive most likely means ER/PR+ IDC (invasive ductal carcinoma) but check that out with your medical provider! The 'proteins' she is still finding out about may mean your HER2 and/or Ki67%. Those markers are indications of how rapidly the cells are replicating. HER2+ bc now has a targeted therapy (like Herceptin or Perjeta) that is used in conjunction with chemo to improve response. If your HER2 comes back + it is possible that they'll want you to do neo-adjuvant (before surgery) chemo to shrink the tumor first. You will want to start a binder and get copies of your written reports and pathology reports. I think that you'll want to meet with an MO before scheduling surgery. After your breast mri, they may want to do additional scans (pet/ct) as well. When you're ready you can (confirm your diagnosis with your doc's office), go to the IDC forum and start reaching out to women who have had similar treatment experiences or who are currently going through similar treatment. You are not alone! There are so many amazing women (and men) here. Please continue to reach out. ((hugs))

  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    tapestry, if you are considering reconstruction of any kind, you will also want to meet with a plastic surgeon (PS) prior to surgery. It is very common for these initial consultations (some people seek 2nd opinions for different specialists) to take a few weeks, so don't let that deter you. Many women feel an immediate need to have a surgeon get it out! I did too. But getting initial consultations with your team and making a treatment plan that takes into consideration your personal risk profile (your bc specifics, age, genetic and/or family history, other health conditions) as well as your preferences and your risk tolerance is important! Most women here have a period of some weeks before they have a treatment plan together as they have additional imaging and consultations with other experts (MO, RO, PS). Resist the urge to rush, take a few days to understand what your diagnosis is, then collect your questions and begin building your team. You can do this!

  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    Tapesty, sorry to hear that it is cancer after all. We know it's very stressful and scary but know this, no matter what it feels like right now, you will not die in the next few weeks or months and I recommend having someone at your appointments to ask questions and remember what you don't, it is very helpful. You can do this :)

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    Bummer about your diagnosis, Tapestry, but you still have options. Whether to have surgery (and sentinel node biopsy) first and then proceed with whatever adjuvant treatment is necessary, or do neo-adjuvant chemo would likely depend on your tumor's HER2 status, as HER2-targeted therapies are given with chemo. And your doctors could see if the chemo is working or if a different “cocktail" needs to be tried. If HER2-neg., the decision would have to be made as to genomic testing on the tumor (OncotypeDX, MammaPrint or Prosigna) to determine its aggressiveness and the likelihood that it would be so vulnerable to chemo that the benefits would outweigh the risks. (That's what your doctor means when she says she's waiting to find out “more information"). There are instances of tumors as large as yours, and grade 3, coming back with low or low-intermediate OncotypeDX scores or “low-risk" w/in the parameters of MammaPrint or Prosigna (which have no “intermediate risk" category).

    Because your maternal grandma had breast cancer, genetic counseling and testing for mutations would be a good idea, especially if you are Ashkenazi Jewish (which increases the chances of inheriting BRCA1 or 2 mutations). The fact that your grandma had a bilateral mastectomy might not be as relevant as you think, as it used to be routine standard-of-care--lumpectomy was uncommon as recently as the late 1980s. But if you test positive for one of those mutations (or others related to increased risk of aggressive breast cancer), bilateral mastectomy and perhaps oophorectomy might be prudent.

    Talking with a surgeon will lay out your options, and the timetable for what happens and when (MRI can report if lymph nodes look hinky, but it can't diagnose what if anything is in them); you might be able to get a sentinel node biopsy without removing the primary tumor, in case your team needs to know node status before making surgical or neoadjuvant chemo decisions.

    You need to assemble a team: breast cancer surgeon, oncoplastic breast surgeon if you decide you want reconstruction, medical oncologist to drive all your care other than surgery and radiation (if needed), and radiation oncologist to plan and administer radiation should that be necessary.

    Breathe deeply and read all you can here on BCO's treatment & diagnosis articles, as well as the American Cancer Society and Komen Foundation websites, Dr. Susan Love's Breast Book (and a similar volume by Dr. Elisa Port). Don't Google until you know exactly what you're dealing with. You don't want confusing and conflicting information, especially being scared by worst-case scenarios that will likely never occur. Catastrophizing does a person no good.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Stepping in to say that I'm so sorry you're here. However, you'll find much support, knowledge and understanding, so you've come to the right place.

    Ask lots of questions. No matter how minor!

    I agree on the recommendation of Dr. Love's book. First thing I bought after my diagnosis. And -- I know it sounds crazy right now -- but this journey does get better as you put a plan into place.

    I asked for Ativan for nerves during the initial weeks and it really helped. For those nights when you're reading at 3am.

    Hugs and kind thoughts to you.

  • tapestry
    tapestry Member Posts: 8
    edited July 2017

    Thanks, everyone!  There is a lot of information to process, but I really appreciate everyone's help.


    My doctor called me Friday evening at 6:30 to tell me that the cancer responds to HER2nu and estrogen and progesterone and that it's invasive ductal cancer, grade 2-3, with a 3 cm tumor in the left breast.  She is gonna refer me to a medical oncologist and said I will need chemotherapy and Herceptin.  She said the bad news is that HER2 is a very aggressive cancer but that the good news is that Herceptin has had a good success rate, so I hope that it was caught early enough for it to indeed be successful.  I had a mammogram in September 2016 which didn't show anything, so I'm a little worried that if it started growing right after the mammo and it wasn't caught until July 2017, does that mean it hasn't been caught early since it's 3 cm large now?  My husband keeps saying it was caught early since it happened after the mammo and says to try not to worry, but as you all know, it's very, very hard not to!  Also, I saw someone on here saying that Ashkenazi Jewish women are more prone to this and indeed I am Ashkenazi Jewish, so that's a worry as well.....oh, also, thanks for the recommendation of the Susan Love breast book which I've just ordered on Amazon.....I'm hoping that the more information I have, the less I'll worry, but hopefully it won't be the opposite!


    Anyway, thanks again and I guess I'll head over to the IDC forum now!


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Hey tapestry,

    Feel free to join us on the Triple Positive Board! There are plenty of HER2+ women who have been successfully treated. Be sure to ask about Perjeta, a relatively new targeted therapy for HER2+ cancer that you can get as part of neoadjuvant treatment. You should qualify for Perjeta because your tumor is bigger than 2 cm. Best wishes!

  • tapestry
    tapestry Member Posts: 8
    edited July 2017

    Thank you, Elaine....will def mention Perjeta to my doc and will see you on the Triple Positive Board!

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