How do you get past the fear of recurrence?

Claire_in_Seattle

I am just far enough out to appreciate that I have been able to do things I only dreamed of doing a few short years ago.  Not things following chemo, but things prior to the end of my marriage, move, and start of my life here in Seattle.  Things like the fact that my two colleagues I wrote the data linkage analysis article with are willing to do this a second time!!!

Plus, a personal best in the Seattle-to-Portland a week ago.  In fact, I did a group ride on Saturday with a major hill and my friends were amazed to see me take on the hill with no problem.  I couldn't do this prior to taking up running, so not even six months ago.

One major milestone in recovery was getting my dreams back.  That was 2 years ago, or roughly one year out from finishing up radiation.  Then a lot of rebuilding and a couple of surprising twists in my career.

Another thing I think happens is that we eventually overlay what happened with new, more exciting events.  This takes time.

But shock is no joke.  I think that recovering from breast cancer treatment has taken less time than recovering from my marriage did.  I still have nightmares about that.  No, not anything physical, but not healthy for me mentally.  So I got to do BOTH at the same time.  I can't tell you how much fun that was.

I am so thrilled to be on the other side. - Claire

wintersocks

I cannot work out what I think or indeed what I feel or what I need. I know I am at high risk of recurrence, just look at my stats. I still feel in a state of numbness, flatness a kind of inability to'feel' much at all.

I wonder if others feel the same? Additionally, the pressure to 'live every day to the full' feels an alien concept to me? what does that mean? unless I go around 'whooping' every 5 mins I am not 'living?' I don't want that kind of strain. I want to be 'ordinary' like others who are disease free. I don't want to feel I am having to watch myself living and checking if I am doing it 'properly'or 'deeply' enough. I have already spent so much of my life doing that. I don't feel an 'awakening' as to what is precious in life - I already knew. 

Also, it strikes me that how we each cope with fear of recurrence is inevitably predictable; our personal disposition/outlook/coping mechanisms will dictate.  I don't believe coping with fear of recurrence can necessary be seperated from the backdrop of our pre-bc lives. Our childhoods, our previous/present illnesses breakdowns/divorces/other deaths - our previous fragility or robustness,  bc is just another test, for some of us it is simply a test too far, and we maybe have little to call upon, our resources used up.

Writing this it seems pretty obvious, yet complex at the same time. Think I am musing to myself.

I feel neither moved to elation at each 'new day' nor have I paralysing fear of an early death from thiis disease.   The fear is for my children who still need me. 

TeamKim

Hi all -- Gia, thanks for starting this thread.... Very interesting topic. I am so in awe of how articulate and heartwarming your posts are. What a courageous group of women (and men -- Colt, you rock!) I have discovered!



I am just starting my treatment journey, yet I feel like I can identify with so much you all have said so eloquently. Much of my fear has to do with those I would leave behind when I die and even as I begin treatment, I am feeling around for a role for myself, as I have always been the caretaker of everyone else.



Many of you have commented on your fears for your children, and I have an only child DS who graduated from HS this year. As part of his graduation gift, my husband and I wrote letters to him and I made him an inspirational quote book. This was about 4 weeks before my annual mammo showed microcalcifications that set me on this current journey with my first Dx..... But just today I read what I had written to him and it resonates now in a new way. Maybe because I lost my father to colon cancer when I was 16, and I have continually felt his presence in my life since then, the ideas I shared with my DS bubbled up. Anyway, I thought I would share a little bit of what I wrote in hope that for some of you it might provide a helpful perspective. In light of the Dx I now have, it has taken on deeper meaning for me......



...................................



Now, and forever, I want you to know that you are part of me.

Ever since you were conceived, I have made every decision with the thought of what would be best for you. I have shared everything, given all of my imperfect self, to provide the most that I could for you. Now it is time for you to make your way in the world. But you do not go alone, because this same process which has made you part of me has also made me part of you.



I have always been, and always will be, there for you -- no matter what. There will be times in life when you are down and discouraged, but concentrate, and you will feel my comfort. I will be that voice in your head encouraging you to hold your head high and walk through the storm. I will be in your heart when you do great things, when you fall in love with people and with ideas, when you embrace new experiences -- and you will feel my pride as your own. I will lend my courage to help you face challenges and my wisdom to help you make tough choices. As long as I have breath, if you need me, I am here and all you need to do is call. But even when I am no longer living, you will never be alone. For my voice and touch and spirit will always be a part of you..... Never forget that.



....................

lisa2012

This is a great discussion. I also get antsy when people think they know what "caused" their cancer. My sister had it 7 years ago, in the midst of an awful divorce. Many suggested that stress was probably what caused it. Stress and misery are bad, for sure. But when we found out she had the BRCA gene a year ago, she stood in the parking lot and said, "So now I know that it wasn't just the divorce." I think it is terrible to suggest that you did something to cause it, genes or not. Another friend, who has lung cancer, always explains "And I never smoked!" as if people will immediately assume that she was careless.

Just my two cents. I know it's emotional and we go all over with it,at least I do.

Colt45

My anxiety is multiplied by the fact that we have 2 young girls. When we met for the 1st time with the medical oncologist, he started right out of the gate with "you're going to be OK"... My wife just collapsed and cried out "I HAVE to be there for my girls"!



It is what weighs most heavily on both of us.



My girls need their mom.



That's what makes this crap most scary to us.



I also like Ann's perspective that the original cancer has been obliterated. If something else happens, then it's something else-----and it's not here now.

Colt45

@TeamKim: That was beautiful. My eyes welled up reading it.

Colt45

@Wintersocks: I understand you. Our life was great before BC. We do not look at the BC diagnosis as some opportunity to pass through a portal where we finally realize the beauty of a life we were previously failing to recognize and cherish.



We 'got it' without the BC diagnosis.



The only thing BC is for us is a threat to a great life we were already living the hell out of.



My idea of living a full life isn't to now climb Mt. Kilimanjaro because we loved our life before BC and climbing Mt. Kilimanjaro was never a priority.



Living our lives like we're living normal lives is being defiant enough. It's our way of telling BC to go eff itself-----we're not changing.... Yes, we are trying to be healthier with diet and exercise together-----but that's a general improvement not just BC specific. Yep, my wife is limiting sugar eating better. I think it goes with the 'doing what you can to help yourself' mantra because so much of this is out of our control.



But we're not going to become people we were not. We like who we were... and we're gonna stay those people.



We really enjoy our lives. My love of life is so closely tied to love of my family. It's my purpose. I love it. My wife and my girls are my everything. I have great in-laws and great extended family.



I enjoy this life. I'm not changing. We're going to live to 99 or go down swinging living this life that we love. Forget you, BC.



That's how I feel.



I am so happy for others if they start living a life they love after BC.



We were already doing it. I have been blessed.

Colt45

This site has helped me so many times... but some days I hate myself for coming here.



I clicked on a thread that announced 'New hope for hormone resistant breast cancer'...



The I read THIS:



"NEW HOPE FOR HORMONE RESISTANT BREAST CANCER

 

MEDIA RELEASE: 23 Jul 2013



Seventy percent of breast cancer patients have oestrogen receptor positive cancer, and most patients respond well to anti-oestrogen therapies, for a few years at least. Within 15 years, however, 50% will relapse and eventually die from the disease."





FIFTY PERCENT?!!?



That sounds REALLY high.



Can anyone talk me off the ledge?

I had been in a pretty good place mentally the last few days... and I decided to read this article here----and I'm in shock again.



Where does this figure of 50% come from?



It doesn't SEEM to come from the survival calculators (PREDICT or Life Math).



Anyone?

PeggySull

The percentage here sounds really high! I've read a number of studies and none of them have had this bleak an outcome.



Even if this is true (and I don't think it is) there is so much research going on in BC treatment and prevention of recurrence that these stats would have to change accordingly.



Try to be selective in what and how you read studies. It could be that there are details of a study that aren't included in summaries (number of people studied, stage of BC, age of BC patient,...).



I hope this is helpful. I am triple negative and have a one in five chance of my cancer metastasizing in the next five years. I''m determined that the lifestyle changes and a little help from a type two diabetes drug that I do daily will put me in the 4 out of 5 people grouping.



It's harder on families because they can't "do" anything active besides support at some point. The patient can



Stay positive and cherish everything everyday together with your wife!



Hugs,

Peggy

TeamKim

OMG Colt, these statistics can be so slippery. I think critical reading is necessary because the goals of the study, the sampling, the uncontrolled factors and the statistical analysis can make such a difference. Multiple studies need to confirm and support any ultimate conclusions. That's why research takes so long.



I read this morning that eating at least one mushroom and drinking green tea daily would decrease your chance of getting breast cancer by 89%. I hate mushrooms, but sign me up, if that is the case, right? Still, I thought if that were precisely true, along with an annual mammo, mushrooms and tea bags would be on the counter in the regional breast center as parting gifts. Closer reading of the actual study (past the sensationalized headlines in news sites) revealed it was a analysis of the incidence of breast cancer in Asian countries versus US. There are so many other uncontrolled variables between the cultures, that it seems impossible to pinpoint mushrooms and green tea as the only factors. Nonetheless, overall consensus among lots of studies show benefits of mushrooms and green tea, so I have added them to my diet. But the statistic of 89% -- I think that is unreliable.



So take a deep breath and a grain of salt, and if it still is bothering you, read lots more!

Colt45

This article had today's date on it... but the 50% figure doesn't jive with anything else out there.



If 70% of BC cases are hormone receptor positive (another claim made by the article), and half of these result in recurrence of the disease within 15 years and eventually death----then before you even start factoring in any hormone receptor negative cases, you're already at 35% of all BC cases resulting in eventual mortality from the disease.



This goes against the claim made elsewhere that 80% of women survive breast cancer.



Saying that HALF of all hormone receptor positive BC cases eventually die of the disease simply CAN'T be accurate.



So why then, is an article released to the media TODAY, saying it IS?



It's freaking annoying!!!!



Who proof reads this stuff!!?



This is a new article. Why is it espousing inaccurate garbage?

ali68

My surgeon has given me terrible out look and told me do things now not later. I had chemo first so when i had surgery no cancer there. They think i had a lot more cancerous nodes than 9 or 10 but we will never know.

My DH thinks i will never get cancer again and tells me to forget it happened.

Bless him, i wish i could but i do think about it maybe once a day.

I have given up booze because i think it may help me. It won't but at the moment i'm doing everything possible.

Yes stage 3 grade 3 ER+ is not good but we live in hope.

MNSusan

Many years ago on this site, I read some words that changed my life.



Don't bleed till you're shot.



I know it's hard. I've been there, but I can't borrow trouble. I've gotten two new primaries, my fears were realized. So what? I'm sorry if this sounds harsh. I've got to do the best I can, trust my caregivers and let the rest go. To do anything else will cheat my family out pleasant memories. I can worry and fret my days away or just go and enjoy them. The sun is shining even when it's hidden by clouds.



I intend to be here to dance at my grand kids' weddings!

MNSusan

I made a not-very-sensitive post here the other day.  I've removed the post but if any of you read it, I'm sorry.  No excuses; I was having a crappy day and let it out here.  

Colt45

@MNSusan:

I don't know what you said, but you're entitled to feel down. I hope today is better.

Colt45

Sometimes it's hard pushing the bad thoughts away. I get to a place where I feel good-----then I read 1 more thing, and I'm floundering under the waves again.



I've been clinging to the notion that my wife's odds are good.



Then I read something bad that COULD be about my wife because something in her pathology matches what the article is about and I'm in the dumps again.



I have to take my own advice... listen to what the doctors you trust tell you about YOUR BC, not somebody else's...



...and what a friend here told me: "At some point in this whole nasty mess, you just learn to trust.  To have faith that you (or your wife) will be okay."



I gotta let it go.

Lily55

The radiotherapy article really threw me today...

ali68

Susan, hope your feeling better we all have crap days.

I shouted at my middle daughter to eat ( has eating disorder from me having cancer) it makes me mad when I'm trying to stay alive for her and the rest of the family.

IngridJ

Hi

This is a quick message for Colt; I've come to a conclusion after reading many of your posts...

That I can only dream of being loved by someone as much as you love your wife..

Really...

IngridJ

Hope that didn't sound soppy..

ali68

What a lovely thing to say! I wish more men were more open about feelings.

Don't get me started on or i'll never stop.

doxie

ali68, 

I hope your daughter is getting sufficient help for her eating disorder, which includes helping you and your family.  It can be very difficult to recover from and very hard for the other family members to endure.  I'm speaking from years of experience with this situation.  

So sorry this is an added burden for you.  

shoppygirl

Ladies

I am having such a hard time and need some encouragement. I just completed 6 rounds of chemo three days ago and will start rads in a month. I cannot stop worrying. I feel like I may never feel normal again. I am so tired of not feeling 'normal'. To add to my worry during my pre chemo scans they found a tiny lung nodule that I have to have followed for the next two years. All of my drs have said this is a common finding and does not look like cancer but I am obsessed with it! I even spoke to a ct tech and they said that they see this type of thing all the time too. I cannot relax and do not feel the happiness I thought I would after completing chemo! Any words of advice? I would appreciate it.

LtotheK

Hey gang,

I want to help our friend Colt come down off the edge--believe me, I know how you feel!

Approximately 20 - 30% of BC survivors will succomb to the disease.  BUT, those stats are based on treatment groups that preceed many of the current guidelines.  There is plenty of reason for hope.  I truly believe they will get better treatments on the table even in the next five years.  And that's a cynical Virgo talking!

Colt45

@IngridJ:



That has to be one of the most dear things that has ever been said to me. I don't know your situation, but I hope the love you dream of finds it's way to you always.

Lily55

You could write a book about how to be gently supportive Colt, you come across as so warm and caring...

Colt45

@Lily:



You know you are one of my favorites. I hurt when I see you struggling. You always show up to say something when I am having a tough time. Thank you so much for that.

Colt45

@LtotheK:



You are my friend. I am back off the ledge again. What you quoted is more in line with what I've come across more routinely.



You are another who always seems to show up when I need help. Bless you.

ali68

Doxie, thanks for that yes it's so hard with my daughter. She is under my GP and the hospital but I'm the one treading water. They don't seem to be very active and it makes my blood boil.

PeggySull

Shoppygirl,



You have a very good tumor profile (better than mine). But I think this is more emotional than rational for me and many of us. Certain things "trigger" our fears and that often leads to depression. The end of chemo leaves us in a debilitated state, making it easy for fear and sadness to linger.



When you feel physically stronger, exercise as much as possible as this counters the fear and depression and also decreases your chance of recurrence.



In the meantime keep reassuring yourself that "this too will pass." It is a temporary state. Many distractions don't need physical energy, like going to the movies. And distractions help. What has helped distract you in the past? Plug into those resources.



I hope this helps!



Hugs,

Peggy