Path report

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kelly279
kelly279 Member Posts: 55

Hi Ladies,

I don't really know why I'm writing this post, other than looking for some words of encouragement right now...I was diagnosed back in July, but since I did chemo prior to my surgery (I has a double mastecomy last week) I didn't get my pathology report until today. I always knew that I might be a stage 3 because the tumor was large (about 5 cm), but truthfully I tried not to think about it at all was hoping for stage 2. Anyway, today I learned that there was more cancer than we thought and it was found in 11 lymph nodes, making my stage a 3c. I am completely freaked out. I am 33 years old, married to a great guy with a 2 year-old little boy at home. This is probably the first time I've been truly scared since being diagnosed....thank you for any words of wisdom you might have to share!

Kelly

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  • Pure
    Pure Member Posts: 1,796
    edited January 2013

    I am so sorry... I know the feeling... I collapsed when I found out... But here I am 3 and half years later and doing great. I had 12 nodes. There are SO SO many women I know with 10 or more living 7,8, 9 even 10 years and more.. Hang in there... It takes time to build back your faith after a blow like this... You will find your hope again-because honestly there is a LOT of hope...A lot of excellent txs...You will be ok:)

  • hopefour
    hopefour Member Posts: 459
    edited January 2013

    So understand how scared you are....we' ve all been there when we received our path report! Please know there are so many wonderful woman here that will give you encouragement, hope, wisdom and strength...you are not alone!! Lots of us thought we were stage ll only to be told stage lll...still lots of hope for the future.

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2013

    Kelly, I was diagnosed more than 2-1/2 years ago and still can't look at all my medical records.  I couldn't bear to hear my specifics for months.  I kind of knew, but still, hearing it, then seeing it in print, was as if I had been drenched by a bucket of ice-cold fear.  I had a 2 year old and a 3 year old when I was diagnosed, I know that makes it harder, I do.  There is nothing more important in the world to me than my kids, and I want to be there all the way through to launch them into the world.

    The best way I found to deal with the fear was to remind myself that although the words were new to me, nothing had changed in how I was doing.  My hearing those words, or even just the words, didn't change whatever was happening in my body.  I still had to just keep doing everything I could do to maximize the chances I will be around a long time.  Just keep working at the little things, and remember there's no way to be perfect at them with a little kid, you just do what you can do.  

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited January 2013

    Hello....I was shocked too. Then they told me they were waiting for the last test result to see if I was actually stage four....I was tearfully joyful when I was told I stopped at 3c. Honey, don't let this damn disease take away your passions. Don't let it take your happy. You got through treatment and no matter what stage, there are no guarantees. Big hugs to you!!

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited January 2013

    Hello....I was shocked too. Then they told me they were waiting for the last test result to see if I was actually stage four....I was tearfully joyful when I was told I stopped at 3c. Honey, don't let this damn disease take away your passions. Don't let it take your happy. You got through treatment and no matter what stage, there are no guarantees. Big hugs to you!!

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited January 2013

    Hello....I was shocked too. Then they told me they were waiting for the last test result to see if I was actually stage four....I was tearfully joyful when I was told I stopped at 3c. I guess I Could have gone without knowing the stage because I just listened to whatever they told me to do!

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    {{{HUGGS KELLY}}}
    I did neoadjuvent chemo, it stopped working, had the surgery, 10/10 nodes cancer. Just started more chemo, different recipe.  Had a ct scan, clean :)  I send you strength, love and courage and tell you, you can fight this "thing" and win :)

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    Kelly, my path report sent me for a bit of a spin too. I "only" had 7 nodes, but given that none of them showed on scans, that only one was palpable after neo-adjuvant chemo and that I had a good response to said chemo, it was still quite shocking.

    The thing is that this stupid disease is a complete crap shoot either way. You get people with no node involvement and a tiny tumor who suddenly present with metastasis. You get women like my sister-in-law who had 20+ nodes and is still trucking along quite happily 20 years later.

    It is difficult to process, but you WILL get to a better place.

  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2013

    So sorry you are dealing with this, Kelly! Like most of us, I, too was shocked when my MO said stage III. It really hits you in the gut, doesn't it?



    My daughter is a bit older (12 at dx); for me, having her see me go through this was hard, I felt so sad for her, but also (again, for me) thinking about her and my DH gave me the inspiration I needed to keep pressing on when things felt overwhelming.



    But you will get more used to the idea with time, and there are so many tools they can throw at this thing. My prayers are with you--you can do this!

  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2013

    Hang in there ladies!

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Kelly I'm in the same situation. I'm awaiting the path report. I have kind of assumed I was stage 3 and even though the path report is clear when it comes to lymph nodes after neoadj chemo we cannot really know. It might have been stage 3 with complete remission... Try not to think too much of the statistics. I know I do it as well but better look at the chances than the risks; There is still more than a 50 % CHANCE of 5 year survival. And this is just with standard treatment. I strongly believe there is a lot that can be done besides that. But yes it's scary and I have been scared all the times during chemo when I had a headache or pain in my bones...

  • Ihopeg
    Ihopeg Member Posts: 399
    edited January 2013

    I know exactly how all of you feel! I was floored when my doctor called and said I had so many nodes and that it was ILC. But here I am 6 years later and I am doing well. You will get through this!!

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    new, am I reading this right - you had no positive nodes at surgery? If so, that is great.

  • mary625
    mary625 Member Posts: 1,056
    edited January 2013

    Same here.  I thought I was Stage II.  I had the neoadjuvant chemo.  I knew I had a positive node prior to chemo, but I thought that chemo would take care of it all.  I ended up with 10 nodes at surgery, and I was beyond shocked.  Here I am a year later doing well!  I plan on being here many years from now.  I hate that BC has touched someone as young as you, or any of us.  FUBC!

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited January 2013

    I have a similar pathology to urs. I just had my 6 mo check up and I'm all clean. Treatment sucks my son was 16 mo at my DX but he is doing well. Also I had complete response with the tumor that was left after mastectomy. Most of us do really well. Mda statistics say 78 % survival at ten years. Being young also helps. Your healthy and ready to fight. Big hugs. Pm whenever u want we are all here to support each other.

  • lkc
    lkc Member Posts: 1,203
    edited January 2013

    Darling Girl. I was dxed with a Stage IIIC Her 2 positive BC 7.5 yrs ago. and now am perfectly healthy.

    The cool thing is HER 2 positive BC  Disease is driven more by the HER 2 mutation then Hormones. So... us Gals have Herceptin in our arsenal, which has totally changed our prognosis.

    You will be fine.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Momine - I WISH... I don't know yet. I just meant even with zero nodes we can't be sure how many was positive. So guess it speaks for a great response but stage is unknown in any case.

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    Ok, sorry, I wasn't sure. 

  • kelly279
    kelly279 Member Posts: 55
    edited January 2013

    You ladies are awesome and bring tears to my eyes with encouragement. Throughout this I have been pretty optimistic, what else can you be? But this has been hard to handle. It makes me feel so much better reading how many of you have been stage 3 and are doing great years later. 

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    momine that's alright.
    Kelly I agree. HOPE is one of the most important things in all this.

  • kelly279
    kelly279 Member Posts: 55
    edited January 2013

    MiniMac- My son was 16 months when I was diagnosed...I was 32...and now that he's getting a little older he's starting to understand a little more. Are you finding this too? I had comfort in knowing he had no idea what was going on and that he wouldn't remember. But since the surgery I can't lift him and I need to be suer careful and less hands on and he has definitely picked up on it. All he knows is that Mama has a boo boo and I can't pick him up. It makes me so sad.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    I was actually a little surprised that lifting things should be avoided FOREVER...

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    New, take that ban on lifting with a grain of salt. I was really bummed out at first, but then I started reading and going to physical therapy. I would strongly urge you to start PT as soon after surgery as possible. Don't wait for a problem to start. The base of the lymph massage is a system developed by Vodder, a slightly wacky Dane, so you can definitely find a qualified person in Denmark for this. Make sure though that the PT specializes in BC patients.

    You can lift things, but not right away and you need to build up to it slowly, slowly. I have been back in the gym since May. I wear a sleeve and gauntlet and I use low weights, but I am already much stronger and able to do far more than I imagined possible back when I had the surgery.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    momine - thanks for the info which gives me new hope! I saw a physical therapist yesterday and have gotten an exercise program and am also joining a class in 2 weeks. I thought about having a compression band for the arm now - before any given problem arises. They said that was never used but in my mind it just made sense to try to prevent the problem as much as possible. Especially when radiation will mess the whole area more up...

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    I did wear a sleeve during rads, every day, all day, and both the PT and the docs thought that was a good idea. But I did already have some swelling at that point (the last chemos set it off).

    Another thing I found useful was to do a simple neck lymph massage I found on the web. I have changed computers since, but I will see if I can find it. 

    Lastly, stay hydrated, make sure to get rest as needed and try to incorporate some anti-inflammatory foods (turmeric, cabbages, fatty fish, greens, raw onions - sildemadder! ;) ) every day. Both chemo and rads tend to cause inflammation and although they don't really understand the mechanism of lymphedema, I found that it helped to keep the inflammation in check as much as possible.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    momine haha sildemadder. I feel quite good about that part about the food. I almost have a food ritual going already. It feels so good to stay on the right track.. Helpful advice about the sleeve, I must get one before the radiation. Would like to do whatever I can to prevent this problem so if you find the link at some point Id love to see it!
    About antiinflammatory food you probably already know it but I also eat raw garlic every day. I just chop it up and take it as a "pill" with water along with all the other stuff in the morning.
    I met a woman while I was hospitalized who said that she "stroked" her arm many times during the day and that had kept lymphedema away for over 10 years... Don't know - but made some sense. I guess I will do it all :)

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    I found the video:

    http://www.youtube.com/watch?v=Q9FP6AHj9Eo

    It is easy and doesn't take very long. I used to do it 2-3 times a day when doing treatment.

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013
  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    yes thanks for the link.

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited January 2013

    Kelly, I definately found that there are some consequences with the little one.  They may not seem noticable to others but are definate to me.  Some I love and some not so much.  For instance, he is SOOO compasionate.  When a baby is crying in the store he wants to make sure its ok.  When mommy gets an ouchie, he wants to kiss it and give me hugs.  More so than some other kids I have seen.  On the down side he tends to be more moodie.  For instance we went to TX for 3 days for my check up and my mom came to stay with him.  He had fun with my mom but he has been cranky and clingy since I got back.  Its been a few months since momma disapeared so I think he was getting used to his new normal.  We had prepared him for us to leave but when we would call he would hang up on us.  Its normal from hwat I understand, but annoying. 

    When I had my first surgery he was 15 mo I could only let him sit on my lap at first, no holding.  Then gradually moved up to holding after about 2 weeks, with approval.  I had help with my first surgery, my second I didnt.  So we tried to prepare in advance.  He was around 22 mo for the second surgery so we deconstructed his crib and put the mattress on the floor with the toddler rail up.  He has done really well with that.  I wasn't able to lift him for 2 weeks, but I was on my own, so we improvised.  We got lots of stools so he could climb in his chair easier and wash his hand.  It really helped. 

    D is super cuddly but also very self sufficient.  When I was on chemo and really sick and alone I would "talk" him through how to get to things. So he is really great at figuring stuff out. 

    You do what you have to do to get through it.  Will there be issues he has to deal with, YUP but I was told by a child therapist that as long as they are loved and surrounded by love nothing that happens is insurmountable. 

    Other quirks are my hair, he didn't care about my hair when I had long hair but after being bald and now with short hair he loves to run his hands through it.  Mostly just a bunch of little things.  But he is also 2.5 now so a huge part of the problem is his age as well now ;) 

    It sucks and their are no guidebooks for kids this age, just do what feels right for your family! 

    At first we just said mommy had an ouchie boobie, now we are starting to define it more as mommy has a cancer boobie.  We were told that around to they start to need to know the difference in ouchies or they will think they have to have surgery if they get a small cut :(  it helps to define the severity of ouchies.  Its weird but he does seem to understand.  And when other little kids ask I always make sure to say I have a cancer ouchie but its not contagious.  Gotta love the little things! 

    Sorry, its alot of info, but we have learned a lot on this whole journey.  :)

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