News Keeps Getting Worse :(

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LLizz
LLizz Member Posts: 70
edited August 2014 in Just Diagnosed

Hi Everyone, 

     My name is Liz.  I turned 31 this month and my surgical oncologist called me this morning to tell me that my pathology from my biopsy says that I have breast cancer. 

  • He said it was Infiltrating Ductal Carcinoma, which didn't surprise me terribly because I know it is the most common. 
  • He said it was Grade 3, which makes me feel really really really really scared. 
  • He said that my cancer has no hormone receptors on it.  Then he said that my HER was supposed to come back on Monday, but that expects I will be a "Triple Negative".  

He explained everything a little bit.   So much information. 

I know what my next steps are.  I did my genetic test today and I will go get a breast MRI and I will make appointments with a medical oncologist and a radiation oncologist. 

I really don't know what to do tomorrow, though.   I have a really really demanding job that needs 100% of my attention to keep everything up to date.  I'm a social worker in Behavioral Health.  I have a lot of clients and a lot of appointments.  I feel really helpless right now.  

How do I tell people?  How do I not punch people who say everything is going to be okay?

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Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited August 2014

    Hello LLiz, I am so sorry to hear your news, but very glad you found us. This is a great place to vent, to ask for advice or support, or just to touch base with others who have been in the same position you are right now.

    It won't be long and others will come to welcome you. The main thing to do right now is just breathe and take it a day at a time. The place where you are right now is the hardest. All new, not much information and waiting! Ugghh, it is the pits!

    I can't give you any right or wrong way to tell people, it is totally up to you, many here tell only a few, others, like me, told everyone. I think, because it was such a surprise to me, I just blabbed it out.

    Try not to haul off and punch anyone! LOL You'll hear lots of nonsense from lots of people who just don't "get it" or simply don't know what to say. There are threads on these boards specifically for those comments.

    I do wish you all the very best and will look forward to seeing you around the boards, ask anything, everyone is very helpful.

    Take it easy, be kind to yourself, it is a lot to take in...M  

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2014

    Liz, I am sorry about your dx you are so young. If it turns out you are triple negative I believe you may have limited treatment options. But just because your tumor is grade 3 doesn't mean the worst. You may want an oncodx or mammoprint. I will be praying for you things will get easier once you know what your going to do. There are many helpful tips on getting thru chemo including cold caps.

  • LovieLovie
    LovieLovie Member Posts: 68
    edited August 2014


    Hi Liz - Sorry you have joined the club no one wants to be in.  You made a great decision to join this network of very resourceful/supportive people and we are here 24/7. 

    I was diagnosed over 3 years ago grade 3 and triple negative and my dr. said that I would need to be aggressive so I was.  You need to realize that the next year will be very different from your life now.  You will need to focus on your health.  Good people will step up to help you.  If you've helped others in the past just realize it may be your turn to take help.  If you don't,  you will rob others of the joy that they get in helping someone else. 

    Your Doctors will start to put together a treatment plan specifically for you.  

    As for insensitive people, you will get some bizarre comments and that's a reflection on them not you.  

    Please make sure you take someone with you to your next few appointments as it helps to have an extra set of ears to pick up what you'll miss. 

  • aunt_paula
    aunt_paula Member Posts: 271
    edited August 2014

    Hi, Liz, 

    I am so sorry about your news. It is a scary place to be. I know right now everything is overwhelming--how could it not be, right? I also work in behavioral health, and though it seems as if that (work) has to keep flowing as usual, it really doesn't. It is ok, and a good thing even, to focus on what's going on with you, and if that means taking time off to let this sink in and regain some equilibrium (or figure out what to do until you do), that's ok. Work can also be a great help in terms of feeling normal, and both may be true. I know your head is swimming right now, and one foot in front of the other is all you have to do--and you don't even have to do that if you need to just be still. 

    I am so sorry you're having to deal with this. I hope having a plan will help you feel more settled.

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2014

    Hi Liz! We also want to welcome you to this wonderful community, where you'll find lots of support and helpful information. In the main Breastcancer.org site there is a section for those newly diagnosed that you may find interesting. It is called Breast Cancer 101, designed to help you sort through all of the information on our site to find what is more relevant to you right now.

    Besides this, in the article Breast Cancer and Your Job you'll find ways to manage the emotional, physical, and legal aspects of balancing your job and your treatment.

    We hope this helps!

    The Mods

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 128
    edited August 2014

    LLiz,

    Grade 3 isn't scary IMO (maybe I'm in denial) - if it hasn't spread to your lymph nodes.  From what I hear, it's the lymph node invasion that makes it more challenging.   You will know about lymph node involvement when you have your surgery.  The oncaptype score will also give you more info.  Hang in there.  No need to get worried until you have this info.  

  • ml143333
    ml143333 Member Posts: 658
    edited August 2014

    Hi Liz!

    I am sorry that you had to join the group, but there are many amazing women here that can help you along your journey.  Allow yourself time to grieve, be angry, be sad, be whatever you need to be so that you can move toward acceptance and start fighting this disease!  You will get there.

  • KiLin
    KiLin Member Posts: 55
    edited August 2014

    Liz, your story sounds so much like mine 9 years ago!  I was 37, and I found a lump, and kept thinking it was probably nothing right up until the biopsy results came back.  And it was grade 3 ... and triple negative .. which meant I needed chemo plus radiation.  I completely remember the "news just keeps getting worse" feeling.

    For me, the turning point came after my lumpectomy surgery - the first good news was that it hadn't spread to the lymph nodes.  I will hope that the same is true for you!

    As far as telling people - it might help to remember that you don't need to do anything right this minute.  I know that when I first heard the news, it made my brain race in frantic little circles, worrying about how to handle it all.  But it probably won't make any difference if you give yourself a few days to process it all before you tell the people around you, and you might get some more information to help understand it all in the meantime.  The helpless feeling gets better as you develop an actual plan for treatment.

    Best wishes, and hang in there!  

  • linzer
    linzer Member Posts: 164
    edited August 2014

    LIz, This is one of the toughest parts, initial dx and getting a  treatment plan in place. I had to go to work the day after dx and teach. It was actually the best thing I could have done to take my mind off of things. I went into auto-pilot and only focused on my job during those hours. Then I went home and cried, screamed, and set up all of my appts. I finished out the school year, taking time off as I needed to for appts. and starting chemo. 

    Everyone deals with the telling others part differently. You don't have to tell anyone until you are ready. I shared with a select group at work so that I would know people had my back if I needed it (cover my class so I could take a doc phone call or prep materials when I was emotionally spent and needed to leave right at the end of the day). I also told my immediate family and gradually branched out to more distant relations. This is your story to tell, if and when you are ready to tell it. Do what makes you feel comfortable. 

    Once you've got your plan in place, you will start to move toward being able to manage this. I won't say fully accepting it but at least being able to acknowledge it's part of your life now. Your life will be different for sure, but know that many/most women are able to work and maintain a sense of normalcy. I have had the summer off because of my job's regular schedule. During this time I've been doing weekly chemo and taking good care of myself. That said, I totally could have handled working, although some days may have been a bit more exhausting. I plan to go back to school in September and will work through the year as long as I'm able, again taking time for appts etc. Your life will also change in good ways. My friends and family have rallied and even strangers have shown kindness. I'm not triple neg. but my understanding is that while it can be aggressive, it also usually responds really well to chemo. Also, I think that once you've nailed it, and have been disease free for five years, your likelihood of return is less than the other types. Others can chime in. I may be wrong...

    I know it sounds corny, but one day at a time really does apply here. Surround yourself with whomever and whatever will help you get through. I'll be thinking of you. Just 10 weeks ago, I was where you are and already I feel a whole lot better about my situation in that short amount of time. I wish I wasn't having to do this, but I'm confident I can - and I know you will too! Hugs!

  • inks
    inks Member Posts: 746
    edited August 2014

    Just a clarification since two people have suggested OncotypeDX. Oncotype DX is for estrogen positive ONLY. Mammaprint is for estrogen negative.

    LLizz - being just diagnosed is the hardest time. But soon you will get your action plan in place and that will ease the anxiety a lot. Keeping up with work may be a good distraction from cancer. And you probably already know that worrying will not make your situation any better. Hugs! Wishing you the best for your treatment!

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited August 2014

    Liz,

    Like everyone else has said, I'm sorry you have to be here. As far as telling people, I told family and a few close friends. I knew the word would spread after that which was OK. Most people are wonderful even when they don't know what to say. I did resent feeling like I needed to comfort one friend who got very upset!

    Regarding the Oncotype test that a couple of people above have mentioned, it is only given to ER+ patients. Also, it is given to Stage I and Stage II patients. I know you said you are grade 3, but do you know what stage you are yet? Stage and grade are definitely two different things.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited August 2014

    Hi Liz,

    I'm so sorry you're here. I was diagnosed with Triple Negative IDC when I was 34 in 2011. I had no family history and it really surprised me. I'm so glad you're getting genetic testing because your age and the TN status are big red flags for a BRCA mutation. I have a BRCA mutation even though I had no family history. 

    I would fully expect the grade 3 designation based on your age and the likely Triple Negative factor. I know that's scary, but it doesn't in and of itself spell doom and gloom. Chemo will be recommended to you, so please be prepared to hear that if you haven't already.

    Yes, it's a very scary time. You will likely encounter people who will say dumb things to you, but try not to let it bother you too much. 

    MomtoIrishQuads and Meow: as others have said, OncotypeDX is not for Triple Negative or HER2+ because women with those kinds of tumors are considered for chemo at even the 5mm(0.5cm) range. Also, MomtoIrishQuads, Triple Negative is a whole different disease with different characteristics. Nodal status is not of the same prognostic value in TNBC as it's known to metastasize early and often without going to the nodes. 

    Edited to fix typo.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Thanks.  For the record, I don't think I would actually punch anyone.  I don't think I would even want to.  

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Yeah.  My sweet husband has not missed an appointment yet and doesn't plan to.  We are recording some of the appointments too with the doctor's permission.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Thanks.  It's good to know there are others there too.

  • KSteve
    KSteve Member Posts: 486
    edited August 2014


    Liz - I know the grade 3 and possibly triple negative news is scary, HOWEVER, as my team of doctors pointed out, the aggressive nature of this type of cancer usually responds very well to chemo.  I'm approaching four years and am doing great. I had chemo prior to surgery and had a complete pathological response at the time of my surgery.  No cancer cells found at all and mine was a large tumor with lymph node involvement. 

    As others have said, the beginning of the journey is without a doubt the scariest part.  Once you find out for sure about the triple negative status, please go over to the Calling all TNS thread.  It's full of an incredible group of supportive women who will be glad to share experiences and answer questions that you may have.  Even if you  just want to vent, we all do it.  At this point, you just need to keep putting one foot in front of the other and take it one day at a time.  We're here for you and you're not alone.  I suggest that you don't google too much, because statistics are overwhelming and often outdated. 

    Hugs to you and your husband.  You can do this!

    Kathy

  • tangandchris
    tangandchris Member Posts: 1,855
    edited August 2014


    I'm not going to try to minimize the fear and angst you are feeling right now, it is a real scary place be right now...just after dx. ((hugs)) I know this is hard and I'm glad you have support of your dh. This is a great place for info, venting, friendships....etc.

     

  • HomeMom
    HomeMom Member Posts: 1,198
    edited August 2014

    What I got from a lot of people was "I know someone / relative/ whomever that had breast cancer, they are fine now".   It didn't bother me that they said that, it made me feel better. I knew NOTHING about breast cancer. I went blissfully ignorant through my 20's 30's and 40's. The worst thing anyone said came from my sister, she said "Even when something bad happens to you something good happens". She thinks I get everything I want in life including in this instance, new boobs. To counteract anymore people saying things without thinking, I posted the video of "The stupid things people say to breast cancer patients" on Facebook.  She hasn't said it since.

    My mother is now 80 and has a pace maker. If she lost weight she'd be fine. Cancer in itself does not run in my family. One cancer is all we have. My dad had mesothelioma from asbestos exposure. So the "Why me" mantra went over and over in my mind. I'm slim, non smoker, drink on occasion, eat healthy, have exercised often, even used sunscreens since I was 19. 

    You just have to get the right mind set. This is something your going to fight and win. It's just a bump in the road and before you know it you will have your life back.

  • belleb
    belleb Member Posts: 170
    edited August 2014

    Welcome Liz! I'm in a similar boat - young (35 at diagnosis), Grade 3, Triple Neg. I am nearing the end of my treatment and it really has flown by. You might not believe it now, but when everyone says THIS is the hardest part, it is true! I remember thinking "how can this be harder than chemo and surgery??", but emotionally it truly is a lot harder when you are dealing with the initial shock and have no plan of what to do about it! Best wishes as you navigate this journey...I spent hours poring through the information on here and have learned so much in the last 7 months since I was diagnosed.

  • belleb
    belleb Member Posts: 170
    edited August 2014

    Oh, and people WILL say unhelpful things to you, but I just try to remind myself that they mean well. No one tells you that their relative/friend/co-worker had breast cancer and is fine because they want to annoy you, most people truly don't understand that breast cancer is not one disease, and at the time, they truly think it will uplift you to hear of other people's positive outcomes. It does get taxing at times, but their comments usually come from a genuine place of concern, so I try not to let it get to me ;)

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    KSteve, 

      Thank you.  That was exactly what I needed to hear!  I really appreciate the hope that you placed in me. Thank you. Thank you.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014
  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Thanks.  I am trying pretty hard to not get into a cyclical why-me? thinking.  I think that I will get really depressed thinking that way, because there's no answer.  I really appreciate hearing experiences.  It's nice to not feel alone right now.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Thanks for sharing about your diagnosis and your experiences with people trying to be helpful.  I had a meeting with my bosses today.  They are both therapists, so I think that was in my favor.   I am sorry to hear about your Dx.  I read that young women with BC is pretty rare and Triple Neg is pretty rare too.  It is hard to think that chemo and other treatments might be easier than learning about the Dx.  I hope you are right.  :)  Thanks for telling me a little bit of your story.

  • Ridley
    Ridley Member Posts: 634
    edited August 2014


    LLizz -- sorry you are here -- sounds like you will have a good support system both at home and at work.  I too found the period from diagnosis to finalization of treatment plan the hardest -- not the hardest physically, but the hardest mentally and emotionally.  I felt like I was holding my breath until the final tests were in and the final decisions made, if that makes sense.  

    One day at a time and be good to yourself.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Just looked up the protein Ki-67.  Mine is at 70%

    I am still waiting for the HER2 status.  Did my genetic counselor interview this morning. They are recommending a big panel of genetic tests that go beyond the basic breast cancer tests, due to my age of Dx.

    I have an appointment on Monday with my PCP (regular physical) and I have an initial appt with my medical oncologist Tuesday.  Hopefully breast MRI will be scheduled for next week too. 

    Love you all.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited August 2014

    I'm not surprised by the high Ki-67 score you had. Aggressive breast cancers in young women (TN is known for having a high Ki-67) will usually score high in this area. It's just the unfortunate nature of the disease in our population. My Ki-67 was 76%. I hope you get the HER2 results soon so that you know what treatment plan they will recommend. 

  • belleb
    belleb Member Posts: 170
    edited August 2014

    My ki-67 was 75%

  • placid44
    placid44 Member Posts: 497
    edited August 2014

    Liz,

    Sorry about your news. I was 44 at diagnosis of TNBC (46 now), one node positive. Ki67 of 70 percent. The first week/before knowing full pathology, before having doctors and treatment plan, were definitely the hardest mentally. Chemo was hard for me (it can really vary person to person), but taxol was easier than AC, and I trusted my oncologist...she managed my side effects well.

    I was only able to work a few hours per week, from home only, during chemo. I have seen other women say they were able to work full time, which I cannot imagine. The chemo affected me physically and with cognition. (I have a very fast paced job.) anyway, I'm just saying see how it goes for you.

    The good news is that often with TNBC, it responds better to chemo than other, less aggressive types because chemo targets fast-dividing cells. (For unknown reasons, some tnbc tumors do not respond as well.) My surgeon said that stage affects prognosis.

    Best wishes and feel free to private message me or visit the "calling all tns" thread if you turn out to be TNBC.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Hello,

    This is Liz's husband of 4 months and I'm also 31. We are both very surprised by such crazy news at our age and I want to thank all of you for the support you have shown Liz. This is very scary for her and for me with so many unknowns and so much time to ponder.  Your stories, advice and wisdom is very much appreciated and has relieved some of my concerns as well. I have my own perspective and concerns about our impending path but this perspective is certainly not the same as all of yours and so I'm just thankful that there are good people out there to provide support. It truly is amazing what a few sentences from knowledgable people can do. 

    Liz told me a few days ago, "I guess the honeymoon is over."...now to have an experience that will really prove our vows and without a doubt we will come out of this with one hell of a strong bond. I love her so much. 

    If any of you have advice for me specifically you can route information through Liz. 

    Cheers, 

    Sean

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