How do you get past the fear of recurrence?

sweetpickle

Ang- Forgive me for sticking my nose where it doesnt belong but it sounds like you need to have an intervention with your step son as a family and have your daugter be a part of it so she can see the truth. Dont let his misery drag you down, addicts are masters at taking hostages emotionally. What about your husband? Can he intervene?

PeggySull

Hi, I'm reading the original post here about fear of recurrence. I have it, especially being a triple negative but I use it to better my life and health. It forces me to eat right and exercise daily. It keeps my life's priorities in mind when making decisions about how to spend my time. I say "yes" to more opportunities, I don't put of using nice things instead of saving them for special times,...I could go on and on, but like my new breasts that are actually nicer to behold than my others were (childbirth and age and genetics leading to sagging), my life is now better because of the fear!



Anyone have a similar experience?



Hugs,

Peggy

sweetpickle

Thats how I feel Peggy.

Timbuktu

Claire, what an inspiration you are!  Thanks for being you and sharing,  Now let's make it a great day!  Today will not come again! 

Gai

Hi Peggy

You have touched on an important point.  

We generally view fear as "bad" or negative but in fact some fear is healthy.  It is this fear that got you moving instead of standing still.  It is this fear that got you to go to the doctor when you found the lump.  It is this fear that allowed you to step back into life again.  It's the positive side of fear and the original reason I wrote this post, as it is the way to move beyond the cancer experience and allow it to be one of the many experiences in your life, which is hard to imagine when you are in the midst of pain.  

What a wonderful opportunity for you to experience life in a different way.  

As for me I walked away from a very high paying executive corporate career  because I needed a dramatic change in my life.  My new style of working was to be able to wear jeans to work and work from anywhere in the world.  Since then I have lived in 5 countries, traveled to 12 countries/ 30 cities meet amazing people and had experiences I would never have had.   And I did it all while being authenctic - true to how I really am!  

I did it because when I was diagnosed I had ticked all the boxes - house, marriage, career, friends, family - but felt that I had never really lived, really lived the life that felt true to who I wanted to be.  I love life and bounce out of bed every day. My goal is to provide an avenue for more women to live their truth.  

Thanks for inspiring us today

Gai

Gai

Ang7894

I hear where you are coming from and the pain you're feeling.  The positive step you have taken in talking about this will help you find your way through it.  Your next step may be to find someone you can work with to help you break it down find a way through for each of the issues so that it lessens the imapct that you are feeling right now.  Action is truly the best way to get the help you need and find a positive to reclaim your life.

Tare care

Gai

Gai

Claire

I think you are right there are segements.  From my experience the younger you are when diagnosed the higher the impact of fear of recurrence but you can use it to move you forward not backwards.

You have also touched on a couple of the positive sides of fear to get you moving in a direction that feels authentic with the work you are doing. If you live an authentic life (true to who you are) you lessen the fear because it started to break the cycle of fear.  Doing work that feel authentic to you starts to bring balance to the cornerstones of healthy living. 

I felt that I wasn't really living my life when I was diagnosed and really my deepest fear was dying before I felt I had actually lived.  From that point on I set out to change that perspective.  I realised that I needed to create a life that felt authentic to me.  So left my husband and traveled the world and have never looked back and never worried about recurrence again.

Well done and cheers for a long healthy life.

Gai

Gai

Hi Colt45

You do sound like you have a lot going on.  One of the tools I have used to get to the base of the fear that I have used over and over sucessfully is to write down the fear or the problem and then keep asking why? it is troubling you.  And keep asking why until you have no more answers.  

E.g when I was diagnosed I did this exercise why was i scared of dying? - which was a very real possibility for me.  My base fear was not death but the fear that I would be forgotten by the children in my life.  From that point I set out to be the best aunty I could be and the fear slipped away.  Each time fear arose I did this exercise and the fear didn't last because I was starting to understand what I was really afraid of then I could deal with base of it rather than what I was feeling on the surface of it

Try this it may help you get a deeper understanding of what is going on for you

Gai

mfml

Hello all - I am glad I found this thread tonight.  There is some history here - I can't follow it all.  But - after a very long haitus from breastcancer.org - I found myself perusing the site tonight - I had my last rad today.  So strange.. I never shed a tear through surgery or chemo or rads.  Today it hit me like a ton of bricks - I cried alot - and I am sad tonight.  Sorry for the morbid thought... but as I sat and waited for my turn at rads I wondered which of these people I talk to every day would be here in a year. I had an overwhelming "who is gonna watch me now" feeling.  I started planning how I could finnagle a bone scan or MRI - as I understand they wait for symptoms... they say early diagnosis of a secondary cancer doesn't affect outcome ?!?!?  Really?? ugh... big giant sigh.  A small pity party for me tonight.  I feel like I can't spend a penney - my husband has MS - though he has yet to have a relapse.,, he could any day... and my cancer could return any day.. and we have two little girls.. and not much family.. YIKES.. the anxiety!!  I wonder how I have ignored these things for months while I was on treatment??  Well - I feel like a big debbie downer here tonight - forgive me all.  I hope I didn't ruin the positive vibe on this site.  I know this is alot of ranting and raving I am doing.  I know this is just a dip in the road and tomorrow will be a new day.  

 If any of you experienced ones can give me a tad of advice - it would be appreciated. 

Colt45 - your wifes 2nd opinion RO sounds like the guy I went with!  He told me "you need rads for two reasons - you are very young and your cancer is very bad".  When I had a horrible oozing burn halfway through - he told me "try not to think about it".  He is the top of his field...  so I decieded to overlook his horrific bedside manner.   Glad I was at a good place by the time I got to rads... wouldn't want to meet him at diagnosis.  I am happy I decided to rads. Even though I have the "what now" feeling - I am satisfied I gave it all there was to give.

I hope you all have a pleasant night and that I haven't ruined it for too many of you... you are all so strong and brave.

M

GemStateGirl

mfml:  Congratulations on finishing up your active treatment.  My oncologist's nurse warned me that I would probably feel worse emotionally after active treatment ended and she was right.  As far as I can tell, most people experience what you're describing but luckily it gets better.  In my case, I spent about 4 or 5 months after my treatments ended being absolutely terrified about recurrence but after that it lifted and life got pretty much back to normal.  In a way, I think I needed that time to face my fears and I eventually got more comfortable with the idea that I can't know what will happen.  I wish I could say I never have these fears anymore but at least they're much less frequent and much more manageable.

My oncologist initially told me they would wait for symptoms rather than do regular scans but I told her I really wanted to know as early as possible about any recurrence and she agreed to do a yearly CT scan and tumor marker blood tests on me.  My diagnosis was more advanced than yours (Stage 3C) so this may be why she agreed but I say it's worth talking to your oncologist about.  My insurance covered the tests when I did them recently.

The other thing you might consider (if you haven't already) is getting a prescription for Ativan for the anxiety.  It's a fairly mild medication but can give your mind a much needed occasional rest.  I haven't used my prescription that often because just knowing I have it helps.  I also found relaxation tapes to be very helpful.

I'm sorry you're going through this but know that it will get easier.  Take care.

MNSusan

mfml, you sound like I felt a few days ago.  Active treatment is over and its time to get on with life and yet all I wanted to do was curl into the fetal position and rock.  I hadn't shed a tear either.  I've been upbeat and positive and put my family and friends at ease.  So much so that they don't look at me and see a cancer diagnosis.  That's a good thing but you know what?  Sometimes I want someone to put their arms around me and say, "you poor thing, let me take care of you."  In my life, that's just not going to happen.

Ultimately, I had my pity party, shed a few tears, gave in to the "poor me" for a couple of hours, and then it was done.  Next, I made a list of everything I was grateful for and sonuvagun, I felt so much better.  I heard someone say once that you can't be grateful and angry at the same time - our brains just won't let us do it.  So staying in gratitude is a great place to be for me.  Some days, all I'm grateful for is the roof over my head and food in the cupboard.  Other days, my gratitude is deeply spiritual.  Most days, its somewhere in the middle.  An attitude of gratitude keeps me going.  

Many hugs to you.

slv58

MNSusan, you so eloquently said what I feel! When I was diagnosed and told I had triple negative, my husband told his aunt who phoned me right away. She told me that she had BC and that one thing that helped her was keeping a "grateful journal" to look back on and realize how much she had to be happy about. I loved this idea and downloaded a journal app where every day I find something to be grateful for. I can also put pictures in it because sometimes a picture is worth a thousand words! I truly believe what you said about not being able to be angry and grateful at the same time. I admit there are a few days that I just was not able to find anything to be grateful for and in that case I wrote why, but overall I find there is always something I cherish during each day of my journey. Keep smiling!

sweetpickle

I have to echo the gratitude and journaling, it helped me tremendously.

Abby20

Ladies,

Could you please elaborate a bit of how did you do the "gratitude journaling' thing? I have been trying to start something but didn't know where to start from

Cheers,

Abby 

dogsandjogs

You could also just do an old-fashioned diary where you write down your daily thoughts. I have one of those. Amazing how bad by handwriting has gotten though----

jessica749

FWIW to query about 'how long' to fear recurrence-- I too wanted to know when the curve graph ends...when can I stop fearing recurrence? In response to this question my oncologist said that the statistical odds of recurrence go down to those of an "average" woman about 20 years after diagnosis. TWENTY YEARS. And of course that isn't eliminating your risk, it's just that your risk of a diagnosis becomes the same as the 'average'. While risk may remain at some varying level above normal through year 20,  I think most E + recurrences do occur before year 15...not sure of the varying levels. Info must be somewhere. 

jessica749

But at the same time, reading these posts after a little absence makes me think: STOP! hold on! Get off being 'online', and get thee to the gym to exercise! Following the good advice above.  Signing off now to go and  work out.  Thank you for the thread and thoughts, Gai.  

sweetpickle

Abby- My process is more like a diary. I write what Im feeling that day and then try to write down something Im grateful for. Some days its small things like being able to see my kids laugh and play or for being able to bath myself without help (i had surgery). Everyone is diffrent but I always try to find something positive to end my journal on. Some days all I can write is a string of random curse words and thats ok to. Whatever feels right to you, do that.

slv58

Abby, I'm the same with journaling. I have an ipad mini and got the free app "Maxjournal" I really like it because I'm always on the ipad anyway and it allows you to include pictures. Most days I just write a few sentences including something that brought a smile to my heart. I notice that during spring, birds seemed to make me smile and I would note the different types I would see returning from winter. Sometimes it was enjoying a conversation with my kids or a favourite meal. There were only a few days where I was truly miserable (almost always after not sleeping due to taxotere pain) which has really put this journey into a positive perspective. The fear of the future has subsided because I'm trying to really live and enjoy now!

Colt45

My wife's breast cancer diagnosis has hijacked my thoughts. It's at the center of everything I think about.



My WIFE appears to be churning forward better than I am. She does not spend time researching recurrence and survival odds. I did most of the research for our (her) treatment decisions, so I subjected myself to the survival data and articles, etc.



She kept it simple. She assembled a team she trusted. She did what they recommended. She tries not to look back. They said her prognosis was good, that 'the odds are strongly in you favor', that 'you will be ok', etc., and she believes it.



She has modified her diet and aims to exercise more regularly.



She plans on living a long time.



Of course, I want a GUARANTEE.



But there is no such thing.



I have a story to back it up. 30 years ago, I was in a bad car accident. 15 years later, I had bad disk degeneration in my cervical spin. There was disk herniation and my spinal cord was being slowly crushed. I had loss of sensation up to my chest. I had emergency surgery and filled out all the living will documents. My supports around me in my dire hour were all healthy. I came across paperwork in a file from that hospitalization recently. The neurosurgeon who saved me? Since passed on. The witness to my living will, my then on and off again girlfriend? Since passed on. My supervisor at work who was also a good frien----who signed all of my disability papers? Since passed on. All 3 gone. I'm still here. Minutes before that surgery, I would have traded places with any of them. I was in deep sh!t. That was 15 years ago. And I'm the only one left.



So I say, don't worry about what bad might happen ---but probably won't... and instead focus on what GOOD will probably be in store for you. You never know who's time it is----even if you'd swear you trade places with someone else. You might be the soul survivor when it all breaks down.



Now I just need to take my own advice.



God bless you all.

JennaJMU

Colt I like how you think. Your wife is lucky you are so involved in her treatment and care.

MNSusan

Abby, I have a little book and write the numbers 1-5 for every day. I force myself to come up w five things I'm grateful for every day. The cool thing is, pretty soon you start looking for them and that in itself is pretty darn amazing. A smile, an expected kindness, an ice cream cone, great weather, a phone call from the grand kids. It can be anything!

sweetpickle

I have to say......Amen to that husband!

jessica749

Colt I love this story. Thanks for sharing.

jessica749

PS My oncologist once, in response to my voicing anxiety about a recurrence free future, gestured to the people on the crowded city street outside the office window and asked, "what guarantee do any of those people have?"

jessica749

Thank you too Claire. Agree w.Tmbktu that what you wrote is inspiring.

LtotheK

I am extremely sensitive to this topic, as I am ramping up to get my annual MRI and mammogram after my chemo, radiation, and Tamoxifen breast cancer circus which happened exactly three years ago.

I have a few thoughts, and thank you all for your input and feedback--you all are a real comfort in those dark days, believe me.  

Jessica, while I certainly agree that we all "don't get out of this alive", by first-world standards, the guarantee that my non-cancer friends have is that they will, in all statistical likelihood, live longer that I will.  The chances of me dying from my original cancer--or another one--are so much higher than any of my yoga-loving, organic eating friends dying of just about anything for a long time.  I'm sorry, but I'm envious, bitter, and afraid on some days (usually when I get good test results, I can resume the next 9 months going back to my life carefree).  

To know what you will possibly or probably die from is completely different than having a carefree "we all die of something" dread. I just don't think my friends are thinking about possible random car accidents in the same way I am overwhelmed by my tests every year (the other issue is, many of us often need follow up biopsies for suspicious areas after cancer, and that adds another level to the testing--I've already had to go through a biopsy and full body MRI because of my background and findings).

Part of the reason I feel so raw about this is I was diagnosed at 39.  I feel this frustration and fear among those of us diagnosed early.  The fact is, many doctors describe breast cancer in young women as a separate disease.  There are very few stats to support us.  We get more aggressive cancers.  And the truth is, my chance of living to 80 is, well, not so fabulous.

I also have just hit my career stride!  I am loving life so, so much.  I got tenure, I have grants rolling in, and I am waiting for an adoption.

How do I get past the fear of recurrence?  Simply put, I just can't.  I have severe PTSD from my treatment with panic attacks, guilt about every glass of wine and brownie, and anguish about leaving my husband childless and alone.

So, now that I'm in a state of tears, I guess I'll close with I'm not doing well at all with my fears.  I wish I had a BC "big sister" who could come with me to my tests in August, which frankly, have ruined my summer.

Claire_in_Seattle

LtotheK.....

First of all, I want to congratulate for all the wonderful things in your life.  Wow!!!!  The second thing I want to say, is not to sweat the wine and brownies unless you over-celebrated as I did last night.  This was because the Seattle-to-Portland last weekend was a personal best and also because the data white paper I wrote with two male colleagues was bought by a firm and published online.  I walked home from the wine bar so was safe that way.  The Muller-Thurgau sparkling wine was great as was the 2005 Syrah.  Amazing.

The latest scoop on wine drinking is that it's no longer the evil once thought.  This was from a study done in the UK last year (Cambridge University) and another here in Seattle this past April.

http://www.cbsnews.com/8301-204_162-57579167/moderate-drinking-may-increase-breast-cancer-survival-rates/

I was talking to my oncologist about this last Friday, and mentioned that this should not be news.  If wine drinking were the scourge once thought, you would have much higher recurrence in wine drinking countries such as France, Italy, and Germany.  This isn't the case.

My own take is that Seattle is such a wine drinking city that SCCA people must have noticed that wine drinkers were doing just fine, hence the research.  Anyway good news, and so glad I chose not to abstain.

This from the UK study (Telegraph story).  Dr Pharoah is on the Cambridge U faculty.

Dr Pharoah was speaking at the National Cancer Research Institute (NCRI) Cancer Conference in Liverpool, where he was presenting results from a study conducted with the South Egypt Cancer Institute.

They looked at 13,525 women who had been diagnosed and treated for breast cancer, who they followed for up to 15 years.

Those who drank seven units a week cut the chance of dying from breast cancer in a decade from 20 to 18 per cent, and those who drank 14 units weekly reduced the chance to 16 per cent.

Based on both these studies, I would not be sweating wine drinking.  Not unless the wine is foul.  Because it should also give pleasure as well as be life enhancing. - Claire

LtotheK

Claire, you are part of the reason why I love these boards so much.  I am off to the gym and I am buying a bottle of wine for tonight!  I consider myself pretty up to date on research, and hadn't seen these studies.  So my thanks to you.  I also thank you for your support of my accomplishments.  That is a great compliment coming from someone who is not only enjoying, but also contributing to society. xo

indenial

LtotheK, where do you live? Maybe there's someone here who lives nearby & can go to your appointments with you. I'd be more than happy to go with you (although as a "little sister" not "big sister" since I'm only 30! LOL) and I'm sure there are many more here who would as well. 

I agree that it is very hard facing this as a younger woman. It's one thing to think you might die from BC a few years sooner than you'd hoped to live, and another to think you could die in your 30's or 40's. That's less than half a normal lifespan. We all know we will die someday but when you've had cancer, you are acutely aware that "someday" just might come sooner rather than later... and just when life is starting to feel good.

I have a young son and really long to adopt. I want my son to have a sibling, especially because *I* may not be able to be there for him as long as I'd hoped. At the same time, I am terrified of adopting because I don't want to leave 2 children motherless. It would be bad enough to leave my son but to leave an adopted kid too, who has already lost one mother, just is excruciatingly painful for me to contemplate. But I want to live as if I will live a normal life. I don't want to die with regrets, and I don't want to feel like I never really lived. I really don't think that my similar-age friends are dealing with these kinds of thoughts day in & day out. 

I am still new to all this, just a month out of active treatment... and I can see already that there will be good days (weeks... months...) and bad ones. Some days I feel calm & carefree. I can focus on living in the present, keep my anxiety down, live almost like a "normal" person. Other days I lie awake at night wondering about the pain in my back, the soreness in my neck, the numbness in my jaw, the statistics, the freak recurrences I read about that seem to come out of nowhere, the stories I've read that have ended sadly... it's overwhelming. And then I try to pull my energy back to the here-and-now, except the present (aches/pains/etc.) is exactly what is feeding my fears. I was a hypochondriac before all this and now I'm in overdrive!! It's easier to feel less fearful when you're not in physical pain. 

I'm talking in circles, I know, but I just wanted to respond to your post somehow because it really moved me. There are so many uncertainties and contradictions in all this, that all we can do is make the best decisions we can with the information we have, and hope for the best, while still trying to enjoy the life we have, and the little things like brownies & wine.