Venting.....

Pure

I am just being hormonal and venting but this bc is so hard and so scary.

Recently, I just heard that not only is year 1-3 the highest rate of reoccurence but so is 5-8 and now I heard even up to 13 years in ER pos women. 

So, yes we get more time but do we live everyday with a knife to our throat. We just live everyday waiting and wondering? Thinking of our odds trying to live the best we can until they tell us it's back and our time is limted.

So it seems our odds go up over time not down?  I don't get it and I am not sure how to mentailly battle the fear.

Anonymous

I know Pure,  I get very afraid when I hear about these numbers and especially when I'm depressed or hormonal anyway.  Just vent away baby girl,  we are here to listen.

caaclark

Pure- I completely understand your fear!  I had such a hard time with the fear when treatment was over. 

I asked my rad onc. at one of my appointments a couple years ago if I should be thinking that the further out I get equates to just being closer to a recurrence.  He said, "NO!"  The more years under your belt the better, no matter what.  I don't know if you have seen any of my older posts about stage and recurrence but the same oncologist told me (when I asked him about my prognosis) that he has people with stage I who go on to get mets and die and he also has people who are later stage III who he still sees once a year and they are decades out.  For me, the unpredictability of breast cancer sort of evens the playing field.  In other words, whether you are stage 0 or stage III you still really have the same prognosis.  Either it comes back or it doesn't.  Living in fear will just diminish your life.  I don't say that like I have all the answers.  It took me tons of time to come to that conclusion.  I remember being where you are now and spending lots of time trying to make sense of it all.  Of course, none of it makes sense so once I acknowledged that it helped me deal with it. 

I wish I could say something profound that would ease your fears but it takes time to figure how to live with it.  Now, almost 4 years after being diagnosed I think I have a handle on it most of the time.  I do have more fear during checkups, during my diagnosis anniversary date in Jan. and also around the holidays.  For a long time I felt like if I just stayed on guard I would not get blindsided again if I was re-diagnosed.  But I finally came to the conclusion that even if I stayed on high alert (which was exhausting, btw) if I ended up being diagnosed again or with mets I would still feel blindsided.  Which, then led me to the idea that I was just wasting my time letting the fear take over.

I hope I did not ramble too much and maybe there is something in my response that will help you.

Also, I know earlier in the week you were worried about delivering early.  My now 12 year old was born at 33 weeks and was over 5 lbs, breathing on her own with good lung development, and is incredibly smart.  She was also a great baby who slept through the night at about 1 month.

barbe1958

Pure, I cannot imagine what agony your emotions are going through with being pregnant and the cancer diagnosis. My heart breaks for you!

I like the stats posted above.... 50%....you get recurrence/or you don't!

ElaineD

Or- 0% you don't, 100% you do. There's just no logic to this disease at all, and we could all go crazy trying to make sense of the statistics. You are you, and what applies to others may be very different for you. In time you'll learn to put these worries to the back of your mind-they'll never disappear completely, but they will become less important in your daily life. It would be impossible to maintain any degree of normality focusing on the fear of recurrence. Even at stage 1V I can go quite long spells without worrying excessively-I'm absolutely determined that this horrendous disease is not going to dominate my mind. It has my body in it's grip-it's getting no more of me......

apple

shoot.. we're all gonna die..

i don't worry about it.. a life well lived is the way to cheat death.   

Mamita49

apple,

Well said............. BRAVO 

jenn3

When I was initially dx I was worried that I wouldn't be here for my family.  Then when TN dx came - my fears became worse - thinking I had even less time.   Then........... somewhere along the way I decided to get out of that thought process and enjoy each minute.  I quit reading the negative stuff on TN, haven't looked at a statistic in months and quite asking the onc for my prognosis.  Besides he always says it good and to live my life - he wouldn't feed into my need for the years I had left.

After learning more about BC, my odds are as good as anyone.  And............... even before breast cancer I hated statistics because I felt and still feel they can be manipuated and have flaws.  I say don't look at the statistics and tell yourself you have a very long time ahead of you......

barbe1958

I think I only get scared at milestones...I had two of my kids get married this year, one in May and one in August. I was worried I wouldn't get to one or the other (one a destination wedding in the Domincian). Then I relaxed, then with Christmas coming I started to worry again and Hallmark came through with flying colours! My kids know I want grandchildren (both weddings were planned before my diagnosis thank God, or I'd feel guilty) but don't have any on the horizon. I got the two new wives a Christmas story book that I got to tape myself reading. This way if I never hold a grandchild in my arms, they will still hear my voice.

It was a very emotional purchase and took me weeks before I could read and tape. I wanted to record them before I got results of my latest tests which I told my doctor I didn't want until January 5th so I can go through the holidays blissfullyl ignorant! The only thing he did phone me on was to get me on a prescription iron pill as my red blood cells are tanked.

Pure

Apple-Yes we are all going to die-I am not scared of that. I will take death I just don't want my kids to know the pain of loosing a parent. I also want to be there for them -I guess I want them to have a family growing up. At the same token I tell myself I will fight for everyday b-c of them. And quite hoestly-this is the hard part-I feel so healthy and normal.

Barbe-you have such a great prognosis-your stage and age is so in your favor.

barbe1958

Pure, I know my stage is in my favour, but there is a woman in the forum who started with DCIS who is now a late Stage IV and has already arranged hospice!

And thanks for the age factor, I do feel a very young 51!

Pure

barbe-women 25-35 have a higher risk of recoccurence and poorer prognosis. There odds are different then those outside of that age bracket. That is what I meant.  It weighs heavily on my mind that I was diagnosed at 36.

Also-yes that is sad about the dcis progressing so quickly but that is in the 1% of all cases. I could very easily go on with my life if my odds were 1%. I wouldn't waste a minute focusing on not seeing my children grow up.  But I am thankful for agressive treatment and pray everyday for peace, sterength and grace. I also am throwing everything at my cancer for my kids sake.

YATCOMW

I remember reading a post from a woman who was coming up on six years....she had read that this was the time that many started reoccurring.....and her comments were.....I have wasted the last five years being terrified about getting to year six.

This fear of hers really stuck with me......I don't want to waste the good days----where yes, I feel normal and healthy------worrying about what might come later.  Won't we really regret that?

No one including our doctors have a clue......we just have to work hard enjoying this moment today because we feel good today. Not always easy for sure....altho.it does get easier with each day.....

Jacqueline

barbe1958

Pure, we are all just one mets diagnosis away from stage IV...

Pure

thats encouraging.

barbe1958

Not really, but it is the truth.

Pure

yea thks Barbe-I think with that I will be logging off:)

paml

Hi PurE

I have been on the stage 3 thread for a couple of months but havent really posted much lately.

Today marks my 1 year anniversary since my mastectomy and I noticed that you and I are the only stage 3 B. Was wondering if you could share your stats with me because I really don't see alot of 3B girls. Mine( 5.5 cm/ 2 nodes positive, lobular carcinoma)

It would be good to talk to another 3B girl. Hope to hear from you

AnacortesGirl

Pure -

I'm just wondering something.  In your original post the last line is: "I don't get it and I am not sure how to mentally battle the fear."

So what I'm thinking is that stats can't and won't give us the answers of our specific lives.  No matter how many times we ask the questions about ourselves in 3, 5, 10 or even 20 years we can't get any difinite answers.  We have no control over that information.

But we do have control over mentally battling the fear.  I believe this.  But this is where I fall short because I'm not really sure how to do it.  Right now I'm in control of the fear because I'm actively in tx and my goals are short term.  Making it through the week and on to the next week of chemo.  Countdown.

But when the chemo's done I want to continue to battle that fear.  Will I be able to just search into my soul and figure out how to ignore the unknown so I can concentrate on living my life for me and my family?  I sure hope so.  But if that doesn't work then maybe I'll need to look at alternatives.  Counseling.  Support groups.  A mentor who I can call.  I'm not sure.

It's a good question.  Lots of ladies have managed it and it sounds like they had to search for their solutions, also.  We'll figure it out.  Just hope it's sooner rather than later.

apple

i suppose Jen.. that one becomes 'comfortable' with the thought of a  POSSIBLE shortened lifespan.

i guess that's what happened to me.  after the initial cancer diagnosis shock, i just steeled my brain to ignore the fear.. i found it better to be cheerful and optimistic.  writers tell us (at least in the many cancer books that I've read) that a positive attitude is so important.  You've really come a long way in the short months that you've been here.  as you regain your hair and hold and your baby and get on with your life in the coming year and following, I'm sure things would get easier.  there is no magic pill we can take.. all those antianxiety drugs make you tired.. and there is a rebound to normalcy.

my little 'i'm going to eat a potato chip at 11 thing' enables me to train my brain to not go there.   something will work for you to decrease your fear.. perhaps just time.

glad your baby's still within you and you don't have to deal with an early delivery. 

Pure

apple-tks for your response- yes time precious time. Sometime I think I am just so stubborn I could never accept the thought. I just hate stats-I really need to not obsess so much I think.

apple

I guess i haven't obsessed about statistics because if I read 'mine' i'd know i'd be doomed.   my first six months were pretty dire for me mentally.. and you have only 'been here for a few months.   

i know my 'stats' not good.. nothing has changed - i guess I'm just used to the idea of being visited by cancer.  it's really really nice to not walk around with the cloud of gloom hanging over my head.   I imagine you'll get to this point pretty quickly.. you're a source of great encouragement to new women here.   

 i just decided that it was better for everyone, particularly my family  that i wear a smile rather than be consumed with worry. 

Anyway,we'll never figure out how we will end up.. stats are stats and we are individuals.  

why not be a survivor?  there is no reason, why you cannot be one of the fortunate, at least for quite a long, long while.  it's the untreated ones who bring the stats down.

barbe1958

I honestly thought when I first started on this journey that we had to travel through the stages from 1 to 4. I didn't know you could start in the middle and/or jump to the head of the line. What we never wanted to know, eh?

I haven't read ANY stats cause I'm not normal... (My cancer is less than 1-2% so there is very little known on it. When first diagnosed there was only ONE hit on Google!)

Pure

Thanks I totally agree.

I live for the day when everyminute of every day is not consumed with BC. I am so tired of the mental battle.

I want my old life back so back-I want to make plans for retirement with my husband,-I want to have dreams and hopes for the future-but now well it's like a waiting game. I think just giving up the above things are so so hard and very painful

everyminute

I am over 18 months out from diagnosis and struggle to even remember what life was like pre-bc.  I was happy then I am happy now.  I try not to let cancer have anymore of my time than it already has taken. 

KerryMac

I too can't remember my old life. All I know is I don't live every day in fear or sadness anymore. I am happy. And I am happier being happy.

DCMom

I'll be two years out this January and I actually find myself planning for the future sometimes.  I have periods of time that are as normal as pre-BC, but then sometimes I sit and wonder if I am looking at life through rose colored glasses and don't have the right to be making long term plans...will I just be setting myself up for disappointment?  Or if I don't make long term plans am I just living everyday with disappointment.  I have decided that I don't want to get to the 5 year mark and be disappointed that I had put my life on hold. 

I hope that something suddenly occurs to kill me like Brittany Murphy because the hardest part about BC is the fear and worry about leaving my family behind.  BC absolutely sucks and I wish none of us had ever had to deal with it, but for now it is in the past and for now that is where I want to keep it.  I need to think I will live a long healthy life or else what is the point?

HairSprayMom

paml and pure,

I was 37 at DX and staged as a IIIb as well because my tumors were on my chest wall and my cancer was very agressive (metaplastic carcinoma), usually the case with young diagnosis. I have that constant recurrance anxiety too. Every cough or pain must be mets! Then I have to just tell myself to STOP IT!!!! My Aunt Sara had the best advice for me when I talked to her about recurrance and stats. She told me,"If you are living your life by statistics, you are not living at all". Of course this makes perfect sense and repeating it often works for me. On the days it doesn't I pop a good old Xanax and carry on. LOL Sorry Pure you being prego leaves you out of the Xany club for now. I am 2 yrs 4 mo post DX and I am starting to worry now. The next 2 yr is the main time frame for Trip Neg recurrance/mets and I have been freaking out about it. I had a PET scan done last April and all was NED! Also Pure you will find some great support at www.youngsurvival.org . This is a site specifically designed for young women diagnosed with breast cancer, it tends to be quite a bit more explicite than this site, which is sometimes good when you really need to say what you feel and not temper it a bit! You will also be able to connect with othe pregnant women facing the beast! Hope all of my random rambling helped!

 ((HUGS))

Regina

AKA HairSprayMom