Overwhelming
This is all new and still very scary. I have surgery (BMX) scheduled for March 11th. We'll get more answers after that. I have been doing a little better - trying to stay positive. My husband is having a very hard time - today it is like he is grieving. He has been so strong most of the time. I find as soon as people around me start weakening, my fears really crop up and I have a really hard time. This morning a concerned friend was questioning why they scheduled my surgery for 2 weeks out when m tumor is a grade 3. That got my mind going too. Maybe I just need to stay away from people for a while (not including my husband of course.) It is just so hard when I see people the first time since diagnosis and they look at me like I am dying. Not their fault, it just makes me scared.
Comments
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I am sorry you are going through this. My tumor was also a grade 3 and I found out on January 8th and didn't have surgery till Januar30 th. That was a really hard time for me but now I am doing a little better I am going through the expander part and now waiting on Oncotype DX test to come back. The waiting is very hard. Hang in there. If you have any questions let me know. I may be able to answer them.
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I understand how you feel. I also had a grade 3 tumor. I was diagnosed on Feb 3 and did not have the tumor removed and started chemo on March 13. My oncologist said even at grade 3 a couple of months would not make our situation any worse. Just take a few deep breaths and try to remain calm, easier said than done. Next Tuesday one week will be here before you know it. It is ok to be anxious. I am anxious as well I have surgery March 10 so I am right there with you.
Stay with your BCO sisters when you get down they will help you by just understanding and not just sympathizing or judging.
Praying for patience and peace while you prepare for your upcoming surgery.
((((HUGS))))
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MissyK,
It is difficult, people try to be supportive, but they say the dumbest things. I got so sick of, "just stay positive". Like if I did this would be easy.
You are in for a roller coaster ride, so be self-centered and put yourself first. We seldom do that. I think we stay tough for our families, I know I tried hard to push myself so my adult kids did not worry excessively.
Posting on this website can help with anxiety and to get info from ladies that are going through the same treatments....
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I always say
Put that princess Tiara on ladies.
Let everyone else figure it out. DH's are so trying to be strong for us. They aren't used to having things not be in order. I just sat on the couch, another evening...the bed and we cried together....a good long cry. Then we forged ahead. I still cry but he is my rock and keeps things in perspective.
It IS all about you right now and for a while into the future.
It is difficult, to make the understatement of the year!
hugs
Eve
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I am sorry you are going through this. My tumor was also a grade 3 and I found out on January 8th and didn't have surgery till Januar30 th. That was a really hard time for me but now I am doing a little better I am going through the expander part and now waiting on Oncotype DX test to come back. The waiting is very hard. Hang in there. If you have any questions let me know. I may be able to answer them.
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I remember the looks of pity, and fear in their eyes, for me, and my close cousin and she,s also my best friend didn,t even come see me thru all of this, couldn,t face me, but it hurt me that she didn,t. I am the strong one in my family and she couldn,t see me so vulnerable, but I forgive her and love her.So stay Posituve and HOPE and my Faith kept me saying"I will beat this cancer, and cancer you will leave my body", Hugs!!!!!!!!!!!!!!!!!!!!. msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)
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Hi Missy,
I'm very sorry that you have been diagnosed - it's such a scary thing to hear, and none of us knows how we're supposed to deal with it & that goes for the people around us too. I'm going to tell you the first thing that my breast surgeon told me - he said, Breast Cancer that is confined to the breast does not kill anybody. That helped me understand what the treatments are and what they are meant to do. When they do your surgery, they are going to remove all the cancer cells from your breast & possibly nearby lymph nodes. They are going to check to make sure that they got 'clear margins' and if they didn't, they'll do a re-excision to make sure. The treatments after that will be 'just in case' treatments, Just in case there are some cells they missed, you might have radiation, just in case some cells made it out into your body - you might have chemo. These treatments are really quite effective - none of them are easy, but you will get through them and we will all be with you every step of the way no matter what.
In some ways, it is probably a good thing that you husband was grieving - some guys just stuff their emotions away and ultimately they come out somehow. I noticed that many people were very concerned at first, then as soon as treatments were over expected that I would be 'all better'. (and you'll end up learning to roll with it). Take the next couple weeks to treat yourself really well and prepare for the surgery (get some stool softeners, get a bunch of sizes of pillows together. There's a lot of good advice on the threads here. Being proactive helps, and if people offer help then tell them exactly what they can do to help - if there isn't anything right away, you can say that you don't know yet what the long term treatments will be but that you might very much need their help and would it be okay to call when you know better what you might need help with. This initial part is really tough, but you will get there. One other thing - anxiety meds - if your doc hasn't prescribed them for you make sure he does. You don't have to take them, but it's good to have them on hand.(((hugs)))
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I cannot thank you all enough…I feel so much more calm. Thank you Ziggypop….You are right - I am glad my husband is not stuffing it. Thank you also for your explanation of BC and all they will do. I think I just exhaled for the first time today. I am so grateful for this site. I feel like I am not alone, and have found friends who understand. I still can't believe this is my life. what a difference a day makes.
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The best thing you can do for your husband is talk to him. I just assumed my husband was coping well- he was taking care of me, the kids, the house and still working. He constantly would pat my hand and say everything will be alright. This was the only emotion I got from him. This really angered me and one day I blew up, screaming at him "how do you know everything will be ok"? He screamed back, " I don't know! I just don't know what else to say! I am busting my butt trying to help you, but you act like it's not enough" Well this really hurt me. I realized I wasn't helping him- emotionally. I told him to please not pat my hand anymore, but just hold me while I talked or cried. After that we were both able to cope a bit better. If you have kids, don't hold off telling them either. They are clever and know when something is wrong and they worry. I'm so sorry you are here, but welcome.
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MissyK7 - Sorry you're going through all this. I hope that you are able to talk to your husband while letting him grieve. People take news like that differently. I know you're scared. Sorry you have to be part of the club no one wants to join. Big hugs. Take care of yourself.
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I am done with my chemo treatment as of 1/10/14 and waiting for my exchange surgery on April 9th.
I'm afraid of it coming back...so what do I do? I try to find on the internet all the success stories of women with TNBC and don't find that many. After reading, it seems me to a dark place and I get so depressed. I'm always promising myself that I will not read the horror stories, but I find that I still do it. I'm just angry because initially Pathology said I had DCIS, ER/PR positive and Her2 negative. Then after the mastectomy I also had IDC triple negative. I am so insecure, but my MO says my prognosis is excellent, those were her words. But I am still afraid. I am 59 years old and happily married for the past 5 years. I don't act like an old woman, but my body feels it. In fact, I feel mentally young. I am finally happy in my life and now I have to worry about whether I will be around for the next 5 years. Fortunately, I am taking Lexapro for depression because of this, but sometimes in my mind I am so afraid.
I don't find too many success stories and that makes me anxious. I'm sorry I am being a Debbie Downer, but I am so afraid.
Maybe I should just stay off the internet reading about TNBC and just stay here.
p.s. TifJ...I found some hope in reading your stats. You were triple negative and are still blessed to be here. You have given me hope. Thank you!
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Good explanation as usual ziggypop. I think its SOP to be afraid of what's to come. I was in a fog/shock until the Path report came back after my lumpectomy. That's when I got my wake up call so to speak as in reality really set in and I was terrified. I did the same thing some of you guys did with our families and friends...kept the proverbial game face on especially with my youngest son. He was so afraid. I didn't fall apart though until I got my Oncotype results. That score meant chemo vs rads....I was blessed it was low.
Sorry I divert...my husband is quiet and laid back. Good thing is he isn't emotional like me and the bad thing is - he isn't emotional like me. He is an engineer so if you know anything about engineers its all about function and effectiveness and is what it is...the joke is you ask an engineer what time it is and he tells you how the clock is made...haha. That is so flipping true. So he suffers in silence and I told anyone who would listen. We both react to a crisis in different ways. I think we both need to be less of what we are sometimes. I also think its a good thing that your husband is grieving and talking about it; so many of the women I know who have BC either have husbands who are dismissive or don't want to deal with it...so they don't. They don't know how to be the camp director like us. They are so used to us just taking care of everything they don't know how to do that role reversal. Prayers coming your way Missy. Keep the faith. Diane
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my mother had BC when she was 40. Now she is 66 and been BC free since then. I am waiting on Oncotype test too. I called lab today and they said that sent my result to oc Friday. So now every time the phone rings now I'm nervous. Ugh.
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Shorfi--It is awesome to be done with treatment, congrats on that. I too, am triple negative and understand your fear. I think it's very normal to worry about a recurrence especially so soon after the dx and tx. You say that you haven't seen many success stories of triple negs on line but there are plenty of them. You can find many at TNBCfoundation.org. where there is a forum specifically for long term survivors. Triple neg isn't a death sentence. It looks like you were diagnosed with an early stage and you have received excellent treatment. Try not to despair; this is survivable. I wish you well.
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Shori- In my opinion, cancer is a crapshoot. No matter what type you have, it can come back or not. It follows no rules so I don't put a lot of faith in statistics. Most info online is outdated and does nothing but scare the crap out of you. If it returns, we can only just deal with it and keep moving on. Does it mean I am not afraid of recurrence? Absolutely not! The fear is still there, but after 3+ years, it no longer consumes my life. I still worry about every ache and pain, but attribute them more to my age(48) than cancer. I do get any pain lasting longer than 2 weeks checked out though.
I see that this is your second time around. Do not put a lot of worry into the fact that you're TN this time- it is treatable and responds well to chemo.
Like Catherio said, TN doesn't equate to automatic death! You probably don't find that many long term survivors on the discussion boards because they are out living their life! You will get to the same point, it just takes time. hang in there.
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Nothing is easy now. You cannot expect your dear husband to cope and comprehend. Just take one day at a time and remember someday you will look back with a clearer perspective…I did not get a chance to have a mastectomy because I was stage four from the get go. Hard to believe but there are people like me who would have liked to have a cure….Just hang in and keep your faith close and you will do well. blessings to you and keep faith. Carolyn from Tn/Fl
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OH I loved your post…It expressed it well. I am a medical professional and I had done it all. to no avail…still got tricked. I was one of the few that a mammogram did not do anything for…I was stage four 8 weeks after a mammogram found nothing…YOu are so right….like your advice.
Carolyn from TN/Fl
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Hi, Missy -
Sorry to barge in here, but I just wanted to say how glad I am to see that you managed to find yourself a bit of calm! This whole experience is a bit like trying to jog on quicksand some days :-)
I also wanted to mention that I think most women are far luckier than most men when it comes to something like this, because our instinct seems to be to share our fears and worries, while theirs seems to be to crawl into a head-hole, as ziggy pointed out. Maybe the nature of our bodies just sort of prepares us in some way to accept our vulnerability, or maybe we're just more willing to be unsure out loud.
My husband was really thrown by my diagnosis as well, and found it overwhelming and very difficult to figure out how to process everything. Maybe yours is an exception, but mine would never, EVER think of hopping online and trying to find a forum for significant others where he could share his fear or grief, or ask for information or advice. I encouraged him to find people to talk to about it, so that he could ask the questions he needed to ask without worrying about how they might affect me. I imagine it would be pretty difficult for him to ask me things like "Will I ever be able to still see you as pretty again after I've seen you bald?", or "How will I get past the fear that this is just the start, and that cancer might come back again and again and I'll spend the rest of my life taking care of you when you're sick?"
If those are questions he has, he should feel free to ask them without worrying about upsetting me, you know? Most families go through cancer together, even if it's only one person who is getting treated for the thing. I'm just saying that I think it's a good idea to encourage the people in our lives to find answers for themselves, whether that means an in-person support group, or a therapist, or friends who have been where we are now, or religious sources, or online forums. It's not selfish of them at all, and they're allowed to have worries of their own. The better care my husband takes of himself, the more he'll be able to help me when I need help. Everyone wins.
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