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sarabrown021 View Drop Down
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    Posted: Nov 11 2013 at 7:14pm
I was diagnosed with TNBC in Sept 2012 at age 37. No family history of cancer & BRCA neg. I was stage 2 with no node involvement. I immediately had a bi-lateral mastectomy followed by 6 rounds of Taxotere & Cytoxan. I am 6 months out from my last surgery (reconstruction) in May & started seeing a physical therapist for all my new aches/pains - my new normal, I suppose. I spent most of the past year in great spirits with a positive outlook for my future and, in general, have been doing pretty great. However, two weeks ago my sister in law was told she has bone mets. This news has essentially shattered everything inside me. All I ever think about is - her cancer was not nearly as aggressive as mine, was hormone positive & had the added benefit of hormone therapy, and was a much smaller size when she was initially diagnosed. To hear it has metastasized in less than 2 years has triggered an overwhelming sense of fear in me. I realize everyone's story is different. My HEAD tells me that but it doesn't stop all these crazy feelings I am all of sudden experiencing.  I have never posted on a site before but I'm starting to feel like a support group may be what I need to help cope? I see my onc on Thur & will be talking to him about this too. In the meantime, I'm curious how others have coped with the fear? I feel like a failure every day because I'm letting these thoughts consume me....I can't seem to shake it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2013 at 8:08pm
Sara,
I am so sorry to hear about your sister-in-law.  I do understand that most anything can bring on the anxiety and fear.  I know that despite being three years out, any ridiculous ache or pain brings on the fear that it has spread.  I can tell you that this year is better than last, and I am much better than I was two years ago when I was less than a year out from treatment.  Time does heal, but it never takes away the fear.  I found that I needed some anti-anxiety meds to help me through the scary times.  I need them much less now, but just 1/2 a 5mg Atavan will help me sleep through the night during those anxious times. 
 
Time does heal, but that doesn't help today.  Don't be afraid to turn to whatever support system you can find.  Most people don't' understand the fear you feel, because they just assume you have moved on and are fine.  We all know better.  Just about anything can send us into a spiral. 
 
Again, I am so sorry about your sister-in-law.  It will be difficult to watch what she is going through.  But, as you said, we are all different.  Your treatment could have been exactly what was needed to wipe out yours, while hers may have been more aggressive than there was any way to know. 
 
Hang in there.  Choose your support sytem wisely.  Your feelings are so normal, and don't let anyone brush them off. 
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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sarabrown021 View Drop Down
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Thank you so much Lori for your words of encouragement. Knowing that I am not alone with these thoughts & doubts makes me feel better. Surprisingly (or not so surprisingly), I felt so much better after I wrote my post. Letting out my fears without the worry of someone blowing them off as silly talk. "You're done! You're all better now." Ugh. I'm done hearing that. I'm starting to realize that I don't really share what I'm really feeling all that often & maybe that's why its starting to consume me. I'm afraid of bringing others down. I don't want them to worry, or feel sad. So I only verbalize the positive knowing that I don't always feel that way inside. It makes me feel like a fraud. Embarrassed
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debB View Drop Down
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Hi Sara,

I am so sorry to hear about your sister-in-law. Even if it is a different kind of BC, we are all sisters in this mess. I surely wish I had magical words to make it all better. All of us here totally. Understand. Some days I just grit my teeth when I hear 'you look great' because, like you said, I feel like they are saying you are all better/done and I don't know that we will ever be done with the fear.

I did chemo first, then surgery and radiation. Then I was scared to death. Then I did a clinical trial and was seen monthly after infusions were done and I was taking the study drug. I thought the visits were almost silly, I was *fine*. Well, I am still fine, but now seen every three months. Every ache that isn't gone right away starts the 'what if' nagging demon in my head. I vacillate between 'you are fine, stop living with the fear in the back of your mind and just go LIVE' and between being convinced that I have known all along that it would be back (it isn't).

My way of combatting some of this is making sure that my good friends, and anyone else that cares to know, I make sure they know that our kind of BC is different and that our chance of recurrence is highest in the first three years. So while I am trying to BE fine, the concern is always there and will be for a while. Some folks chose to say 'you'll be all right, I just know it' to which I tell them I surely hope you are right. And those who say that they will keep praying for me, I say thanks, I can use all the help I can get! If there is a Young Survivor group in your area, you might consider going to some of their groups since you will be able to identify more readily with them.

Know that you are not alone and you are always welcome to vent!!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2013 at 11:30pm
Hi Sara. I think I can say that I know how you feel. My sis was dx'd in '05 with bc. I was dx'd in July of '08. Then my sis had a recurrence dx'd in November of '08. Then my other sister was dx'd with uterine cancer in January '09.
 
It just feels like you can't escape...you're trapped in this strange carnival of moving parts where everyone else has the directions on how to get home.
 
I don't have any magical supportive answers on how to deal with the fear, the anxiety and the helplessness. All I can say is take baby steps. The emotional and yes physical ambushes will happen. When they do, don't do just one thing to counteract them, do everything you can think of. Yes, go for a walk, hug a loved one and let them hug you and go directly to your doctor for a script of anti anxiety meds. Eat a salad with that piece of cake you're having to soothe your nerves...but the main thing is to fight the anxiety. A good yell at the sky never hurts either.
 
There's a survivor group in my area, I went once. They told us to bring an object that represented our feelings about cancer. The leader brought a box and she said we could all get inside and she'd put the lid on it so we'd be safe. Mmmm, didn't appeal to me much. I brought my trekking pole because it helps steady me when I'm hiking and gives me the assurance that I can catch myself from falling (or tripping, haha), so it lets me go good places; I can use it to threaten to whack the docs when they don't laugh at my jokes and give me good news; and it gives me the security to keep going ahead. I gave up on the survivor group and their box. I guess they did help me in the end because I discovered new hiking trails in the weeks afterwards.
 
I hope you find your own power. It's there you know
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Hi Sara,  So sorry to hear about your sister-in-law!!  This must be very hard for her, you and your family.  I totally understand the fear and anxiety that goes along with TNBC.  Just yesterday I hit the side of my foot on a chair and the pain I had........and I thought - geeze.....that foot has been hurting on that side for over a month........could something be wrong.......do I need to see a foot Dr......talk to my onc???  (My next appt. isn't until March).........It is hard when you have TNBC to have everyone say things that seem to minimize the disease like it is no big deal.  We all know IT IS A BIG DEAL!  I actually was shocked at a recent gyno appt. that my gynecologist did not know the difference between hormone driven BC and TNBC........I feel like I am educating many along this journey.  Every once in a while you talk to someone who gets it!  I do think bone mets are really the worst fear we all have since that is not curable.  I can't imagine having to see and hear all that will be going on with your sil over the next months/year.  I pray that you can find some peace and realize we are all different.  You had a good response to the chemo and are doing well.  Each day get up and be thankful and try to fill it with enjoyable activities and try to focus on other things.  Sending a big hug!!! 
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2013 at 6:44am
Hi Sara,
I'm relatively newly diagnosed, but I'm already projecting about how in the heck I'm going to deal with the first three years  after my treatments are done.  Some days, particularly in those hours when I'm crashing from the pre-infusion steroids, I feel COMPLETELY consumed with fear and that I'm convincede I'm already a goner....it's just a matter of time before the mets come.  So, I can totally relate to what you are talking about even though our circumstances are different.

I noticed that you felt like you really couldn't talk to the people around you about it.  I also feel like nobody around me truly gets it either (except possibly my husband and I can only wear him out so much by talking about it with him).  

I say the above about myself all as background information for what I'm about to say next.  

These forums are starting to help me a lot with the fear....just knowing there are a boatload of women out there that truly get it validates that my feelings/fears are par for the course with TNBC!  

The other thing that has helped me tremendously over the past couple months is that I started the practice of  journalling three handwritten pages every morning.  Journalling has become such a sanctuary for me.  Journalling is a safe place for me to vent, rant, cry, cuss, complain, express my deepest fears....whatever I want without someone trying to talk me out of my feelings.    I have no rules or agenda about what I am going to write about each day....I just start writing and let out whatever happens to come out until I've written three pages.

I am really coming to understand (through the wisdom of the wonderful people here and on other cancer forums) that we each have our own individual journey on this road of life and what works for me may not appeal to you at all....I'm just putting the concept of journalling out there for you to take or leave as you want.

I'm glad you have chosen to post here.  Your honest post, and people's responses have helped me in ways you will never know.  

I'm so sorry to hear about your SIL.  My heart goes out to both of you.

Hugs,
Kay
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Oh my goodness. I cannot tell you how uplifting its been reading all your responses. Thank you for taking the time to respond with your stories & what has helped you move forward.  I was feeling like I was going down a dark hole....depression?.....but after posting & reading all your comments I feel so much better. I'm much more encouraged, less sad. I still think some anti-anxiety meds are in my future though! Ha, ha. My husband has been wonderful & I can talk to him about anything. But of course I feel for him. First his sister, then his wife, and now his sister again. So I've been trying to spare him with my feelings of "certain doom"

@Deb - Thank you. Just your response...the empathy, the sisterhood, and the 'me too' are magic words to me. Helps to hear I'm not crazy & that you too have the same thoughts. Not that I want anyone to have to have these thoughts! ...but it does help to know its normal.
@ MainSailSet - Love the analogy of the carnival. So very true! I usually like carnivals but I'm ready for a break, for sure. So sorry about your sisters. I've told my SIL I am going to be there for her no matter what & don't "spare me" by not talking to me about things as we move forward (as she suggested once). But you're right, I definitely need an outlet for myself if I'm going to be strong for her too. I WILL find it.
@ MLindaG - You are so right! I feel like I'm an educator on cancer sometimes. Even my SIL & inlaws are so uneducated about BC even though they've been through it once before. Its surprising to me. Personally I feel knowledge is power. Of course, knowledge can also be a curse when going through the dark times as the mind can wander to some dark places. Your response helped give me some light.
@ Kay - I worried about my post bringing others down but ultimately I felt I need to share. I'm so glad I did! And I plan to continue to share & peruse the forums now. I can see the benefit. I agree about no one really getting it. I have a wonderful husband & some amazing friends and they all WANT to get it but deep down, I know they truly don't understand. Its a daily struggle. The precious innocence of it can't happen to me is gone. So as I mourn for the person I used to be, I simultaneously try to push myself forward. Its exhausting! My SIL, the one person who I thought would get it, never did. She stuck her head in the sand. I hope I can be there for her in ways she wasn't there for me. Cause I know how important it is to be positive. Which brings me full circle to where I am now. I NEEDED to share in order to move myself forward. I'm so glad I did. Girl, keep up the fight. You're going to rock this!

Prayers & hugs go out to all of you. You have lifted me up in ways you can't imagine. Now....off to get some of those meds. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ams Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2013 at 4:42pm
Hiya,
Just reading & hope you are feeling a lot better - meds, pep talk & all that stuff.  I start my chemo tomorrow but already had a lumpectomy last month & no node involvement.
I find praying, even if it sounds more like some monk chanting at times 'cos it is pure desperation so I can function, or get some sleep, helps.  Actually, I think this whole business has increased my faith & though I'm new here, & in the area where I live, so find talking about faith & cancer hand in hand, tends to freak some people out a bit.  Like the cancer has tipped you into the loony category, & as if the faith is blinding you to some nasty truth that would be right in your face if you weren't talking about the faith.
Soz that you SIL has her diagnosis, & that she has her head in the sand.  I totally agree that knowledge is power, more people need to be educated about TNBC, but I tell you, my surgeon & breast care nurses had these big smiles on their faces when they told me it was trip neg - so I went into this with a totally different mindset about TNBC than most people.
Anyway, I tend to ramble (talk & type lots) but the basic gist of it is, yes the fear is crippling at times, but find the thing that works for you & do it, every time you are scared.  Apparently our BC has a much lower chance of recurrence if you get past the 5 year mark.  Like even lower than people who have never had BC, so that is one positive.  Also no 5 years of awful hormone treatments (have a friend who is living through the worst days of her menopause, again & again & again 'cos of the hormones she's on)... 
Take care, God bless you & yours & hope to see you around here again
Cheerybye for now
x
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