Newly diagnosed with so many questions

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aris
aris Member Posts: 124
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I was diagnosed last week with IDC ER/PR+ HER2 2plus (with the results of this being sent out for the FISH).  I meet with an interdisciplinary team tomorrow. The team is a rad onc, surg onc and possibly med onc - the goal is to have a recommended plan by the end of the appointment. 

 I'm 44, my mom had breast cancer 33 years ago (she was also diagnosed at age 44).  I don't know if I have the BRCA gene or not, nor does my mother. 

 I have so many questions, I don't know where to start. But I thought I'd ask here if any of you can recommend any questions you think are critical to ask. 

 The main question for me is the issue of lumpectomy with radiation versus a mastectomy. I'm leaning towards a mast, but would love to hear anyones experiences/thoughts on how to make such a decision.  I'm terrified of a recurrance, I have 2 small children at home and want to be healthy for them.

 Thank you for any guidance you can impart.

Pam

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  • She
    She Member Posts: 503
    edited February 2009

    Hi Pam,

    I'm so sorry you had to join 'the club'.  I was 42 (my Mom was around the same age too) when I was diagnosed (dx) - almost 14 years ago.  I'm sure some of the ladies currently in treatment will provide you with much more up-to-date info than I will, but I see you posted over an hour ago and I'm betting it feels like days for you at this point. 

    Your team will establish your treatment (tx) plan based on your Grade, Stage and ER/PR/HER status.

    What you can do:

    1. Take someone with you to your appointment tomorrow (and every subsequent app't), to take notes for you, or take a tape recorder.  There will be a lot of information to absorb and perhaps some terminology you won't be familiar with.  Notes/recordings are very beneficial when you try to process all the info you'll get.
    2. Knowledge is power.  Start a binder to organize your notes, obtain copies of all your test results, surgical reports, etc.
    3. Learn to become your own advocate.  No one knows you better than you do.  Educate yourself on your own type of breast cancer (BC).  This website is a fantastic resource. Be careful you don't overwhelm yourself with info (easy to say..harder to do ... did it myself).
    4. Once you have a plan, get organized.  Whether you have a lumpectomy or mastectomy, you will probably need some help for at least few days - child care, meals, housework.
    5. The choice of lumpectomy or mastectomy is such a personal decision.  Some women ask their doc what he'd recommend if it was his wife.  Your team should give you everything you need to make an informed decision that is right for you.  Depending on your stage/grade you might want to inquire about the Oncotype dx test which establishes the best tx protocal for your BC.

    I think we're all terrified of a recurrance, waiting for the other shoe to drop.  The fear does lessen as time passes.  Your team will do everything in their power to prevent a recurrance, so focus on the 'now' not the 'what if's' (again, easier said than done).

    Take plenty of deep breaths.  You can do this.  It isn't a cake walk but it is doable.  Learn patience, this process takes time and it can be frustrating.  This diagnosis changes one's life.  But that doesn't mean life won't be good again.  My prognosis was pretty grim.  Well, they were wrong, but then they're only human too.  Here I am, almost 14 years later and I'm healthy, working way too much (my bad) and travelling the world.  I look at my life as a series of adventures, not all were good ones, but they were adventures none-the-less.  Keeping a positive attitude may or may not help win the battle, but it sure makes living life a lot easier for one's self and those around you.

    Get yourself acquainted with this website, there are many wonderful women here who will help and support you every step of the way.

    All the best,

    Blu

    Edited to fix spelling

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  • jancie
    jancie Member Posts: 2,631
    edited February 2009

    Welcome to this club - the one that none of us wanted to join but are here for the same reasons.

    Blu was so darn thorough in her response that I am not sure I can add much to what she said.  Also I am just 45 days from being diagnosed so I am very new to all of this myself but what Blu told you is so important especially taking notes but preferably take a friend with you that you trust to take good notes so that you can concentrate on what is being said to you during your team meeting.  The information you will receive will be overwhelming and just the stress factor alone of going through this will result in you not remembering a lot of what was said.  That's ok - that is so normal and to be expected.

    I would like to add something here.  We all experience this on a different emotional level but do not feel as though you have to be strong all of the time emotionally and if you need to get a prescription for some anti-depressants or sleep aids - do so because you do need to be able to find time to relax and sleep.  I ended up getting prescriptions for valium and ambien and that was one of the smartest things I did because other wise I would be an emotional wreck.  Just don't take both at the same time and don't drive on either one of them Laughing

    Valium is great for when you have to go through tests such as MRI's, CT's, Petscans, Bone Scans, etc.  It takes the edge off and then sometimes when you are just so stressed out at home waiting for those darn test results.

    You asked about lumpectomy versus masectomy.  I want to share what Beesie told me when I first joined this site in January because that was a very important question that I wanted people to respond to.  Keep in mind this is a very personal decision that only YOU can make for yourself.  I wanted a lumpectomy and radiation versus a masectomy and reconstruction.  I was feeling that I was being too vain about wanting to keep my breasts and the big picture of course is to get rid of the cancer and live and yet....I was feeling sorry for myself and having a major pity party which happens to all of us at one time or another.

    Beesie told me something like "this is your decision that only you can make but look at the total picture of are you accomplishing anything more getting a masectomy and reconstruction versus a lumpectomy, are you gaining anything for it?"  Ok, those are not her exact words and my computer router was busted all day and now my computer is slow so I don't want to go search to find the thread where she wrote to me.  Bottom line, I did question if it would make any difference at all long term to do either one (lumpectomy versus masectomy). 

    I have a 4 CM tumor and small breasts.  I am going through 8 rounds of chemo to shrink my tumor small enough to do a lumpectomy.  I will have to follow up with 6 weeks of radiation.  Now if I had opted to forgo chemo all together, then I think that personally I would be taking a chance of increasing my reoccurrence rate BUT that is really a question that your oncologist needs to answer based on genetic markers, etc.

    Even though we both have IDC,  our cancers are still different to some extent and our body will react differently from each other.  They thought I was HER2 + until they got the results of the Fish test which showed that I was HER2 negative so that ended up in my favor.  I also had a sentinel lymph node biopsy done 2 weeks ago, they took out 5 nodes and they all came out negative.

    I haven't done much research on the implication of being HER2 positive but I am sure that someone here will answer that question. I do know there is a drug that you will probably need to stay on for years being HER2 positive.  But the FISH test will really give you the indicator for sure so I wouldn't worry so much until you know for sure.

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  • pmellon
    pmellon Member Posts: 38
    edited February 2009

    Hi aris - I also have IDC, Stage 2A, ER+ and Her2+.  I am 40 and lost my mom to breast cancer.  I was diagnosed back in November and went for a lumpectomy, as I wanted to chose the least invasive surgery possible. I do not regret my decision --  However, they were not able to get clear margins, and I have now opted to do a bi-lateral mastectomy - on Feb 9th.  I figured if I need a mastectomy I might as well do them both and not have this fear hanging over my head, as I've already had calcifications and a biopsy on the other side in the past.  Are you going to be tested to find out if you have the BRCA gene?  I have been tested and do not have it, but if that had come back positive, I would have opted for bi-lateral without thinking twice. 

    This is such a scary process.  I just found these boards and wish I had found them sooner.  Everyone has such great information and I sure need info. and support!

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  • coonie
    coonie Member Posts: 7,618
    edited February 2009

    Hi Aris---so sorry you had to join this club, but there are some amazing women here who will support you through anything you're facing.

    I was diagnosed Nov 07. Initially, I had a lumpectomy and 15 nodes removed. Nodes were clear, and I had clear margins. I went through 16 weeks of chemo, and the more I thought about it, the more I worried. So.........after chemo, I ended up having a bilateral mastectomy and haven't regretted it one bit. I'm triple positive and just finished Herceptin last week. Oh, and I was 44 when I was diagnosed too.

    Good luck to you. Please come back when you have questions, or just want to talk. There are some really smart ladies here and they can give you lots of information......sometimes that we forget to ask our doctors :)  hugs and prayers to you... 

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