How do you get past the fear of recurrence?

cp418

LtotheK - love your posts from another cynical Virgo here!  Colts - I feel the same as you describe where certain days are like negative waves if I run across a certain article.  Although I don't like to quote numbers there are approx 2.6 million breast cancer survivors in U.S.  This population has increased and continues to do so.  After I completed my treatments and hair had returned I decided to reward myself with a vacation.  We had not been on one in several years being so caught up in work deadline, hectic pace, and other obligations leaving our needs behind. So I decided it was time to make myself a priority.  It was about ME and I needed to move on and learn how to heal myself emotionally, pychologically and physically.  So do what ever will make you and your wife feel good to start on that new path to healing and moving forward.  We can never erase what happened to us but we cannot let it us rob our future enjoyment of life either. 

doxie

ali68, 

Please PM me if you want to.  I have a lot of experience dealing with this as a mom of someone with a serious eating disorder, and recovering thank god.  

LtotheK

I tend to be a little cynical about the FB "community" and lament not having more face time with folks.  However, this online community is a lifeline in a way that can't really be measured.  You all probably don't realize how you have made my recovery possible, from managing lymphedema, to pulling me out of my panic and slumps.

Though we never wished to be here, what we do for each other definitely exposes the depths of human kindness.

Colt, I did some further research, and the above statements seem to be on point!  Younger women have slightly worse odds given the fact their cancers tend to be more aggressive.  It's about a 10% greater chance of return than the 50+ cohort.  That is still no where near the stats you indicated in that original post!

shoppygirl

Peggy,

Thank you for your words of encourgement! I feel much better today!

Take care!

InspiredbyDolce

Hey everyone,

I'm chiming in here!  )

Colt, I read the article you referred to.  The problem with the article, is it doesn't mention anything specific.  That 50% not surviving part .... could be 50% late stage were able to survive 15 years.  Since they don't tell us the size of tumor, number of lymph nodes affected, stage, or age of patient. And 15+ years at a certain stage might be comforting news to that group.  Also, as someone else replied, some of these articles are based on very old data, with older less effective treatments. 

Shoppygirl, I can say that for me, that the fear of recurrence will subside some the further out you are from your diagnosis.  Especially as you approach and receive good news at certain milestones.  

PeggySull mentioned something that is so true as well, and I feel many don't realize the total impact of exercising.  Exercising will help you feel much better.  Now, unless you were an exercise lover before this, exercising may likely not be very appealing to you. Exercising releases endorphins which will help to balance your emotions.  But what PeggySull said, was really even more right on about how powerful exercising is ... and knowing that there is great research on how extremely beneficial exercising is, once you complete your exercise activity for the day, you will feel more in control of things.  

Ali, Find a member on here who has the same diagnosis that is still here 15, 20, or 30 years later. The thing I wish I can stress more, is that environment has everything to do with how well we feel, and the quality of our life.  I went to two Oncs at one point in time for a second opinion, and there was a huge difference in the ambiance of the office, the mood of the staff, etc.  One office I felt like I had one foot in the ground, the other office I felt like I could accomplish anything I wanted. I had the same diagnosis, but one office made me feel well and the other office made me feel sick. We need a positive circle of influence to get through this, and so I'm glad you are on here, where everyone can be the cheerleader for you and help you through this. 

Ingrid, your post was so touching!  That was so heartfelt, and I know there is something special waiting for you just around the corner.

"Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction"

- Exercise, Nutrition, TNBC and Exercise

shoppygirl

Thank you for your response, I love all your advice! I do tend to be very obsssive about looking things up and comparing them to my situation. Really quite silly considering every journey is individual. I also love the advice about exercise. I have also read about how it helps. Not sure about 90 min per day between going back to work and the kids but I will manage something! Thanks again!

Colt45

@InspiredbyDolce:



You're my angel today. God bless you.



My life is forever changed. One of the changes is a remarkably good one: I cannot keep count of the number of times a total stranger has saved me with a kind word and / or some pearl of wisdom.



If I could do anything to help anyone of you, I would. I walk with you, hand in hand. My heart is with all of you.



Bless you all.

TeamKim

Colt --



Mrs. Colt is one lucky lady -- you absolutely nail the gentle support that all of us so badly need at each stage of this journey. I am holding you and all of my new BCO friends in my heart as I approach surgery on Tuesday -- I am so grateful to have found this site for the very reason you gave. Since my diagnosis in late June, I have come here again and again for the uplifting support of people who really "get it." Thanks to all of you angels!



--TeamKim

Claire_in_Seattle

Inspired.....  Interesting what you said about Lance.  I still think that cycling saved my life.  So many forget that he used the whole cancer experience to make an important difference in the lives of so many.  Doping????......a game of Sucker's Choice.  Don't dope and you lose, dope and you get found out and publicly humiliated.  DUH!!!

I still think that the question is not recurrence, but living the best life possible.

I am doing something new career-wise this week and scared to death.  But I need to do this, and it's all about growth.

So I am proposing using this fear to energize oneself and move forward.  Because we go this way only once.

Apart from exercise, I use a personal "to do" list.  I have three lifetimes worth of things to do.  But this keeps me moving onward.

Plus, the mundane.  So wonderful to have a summer dinner of Chicken Francese, vegetables, and wine tonight.  And savor every bite.

Still think that is what life is really about.  Plus friends and family.  Too much to do.....too little time to worry.

But I do have a heightened awareness of how lucky I am to have all this bounty.  I think that is the ultimate learning. - Claire

IngridJ

Colt;

Four kids, a dog and a cat so I do have love.. Thanks..



Inspired and Claire;

All wise words thank you both for articulating with honesty the grace and potential for moving forward..



TeamKim;

Like you, I have found so much reassurance here, kindness and hope.. It really helps. Best of luck for your surgery on Tuesday.

Colt45

Ingrid, you are blessed.

InspiredbyDolce

Thank you everyone for the kind words!

Claire in Seattle:  How much cycling do you do?  Maybe I should hop on the bike at the gym?  LOL  I do the EFX for 10-12 miles, and then I do the treadmill, at a hill/fast pace for the remaining 30 minutes, which gives me another 2 miles.  I've tried to find out more about what Lance's treatment consisted of, since he only had about 4 months of treatment, from what I recall.  I just remember thinking it seemed like a light treatment considering the extent of his diagnosis. 

Also, I have wondered if it was the blood infusions that helped.  My father-in-law went on Provenge, after prostate cancer, and with Provenge, they withdraw the blood for a couple of hours, then they spin it, and separate white from red, one of those goes back into the body and the other ones gets infused with something, then goes into the body a few days later, and it jumpstarts the immune system, so that it can fight cancer on it's own.  My father-in-law results have been amazing, so I've wondered now, if maybe the rebuilding/circulating, etc of blood is the key.  When I'm so tired and don't want to work out, I often think of Lance's amazing success and that helps me. He really has done so much for the support of cancer.  Whenever I research something, quite often the foundation he started, their website will be one of the first ones to come up in search results, and with a detailed answer.

And now, you too have had the same success.  It is so interesting!!

InspiredbyDolce

Shoppygirl: I'm sure you don't need as much exercise as me!  You get plenty between work and your kids.  You can do other things, like parking your car far away from the entrances of buildings, climbing stairs instead of taking the elevator, vacuuming longer or more often, etc.  You can be creative with how you are able to get exercise on a busy day. A few weeks ago, I cleaned the whole house, then went out and washed and waxed the car.  I was disappointed I missed my weekly goal by 24 minutes, as I didn't workout that day.  Then I figured that the heavy manual labor that day ought to count for something!

Also, has everyone had their D3 levels checked? There is new and emerging evidence that D deficiency is a cause of some bc.  I had mine checked and I had a level of 12, and normal is between 30-100, but I've read that some Oncs prefer it to be at least in the high 60's with a TNBC history.  I went on D3 supplements, and 10 months later I'm at a level of 45.  Still trying to get it higher.  I taked 5,000 i.u. a day.

- Exercise, D3, Vitamin D Deficiency

Claire_in_Seattle

Hi Dolce....

First of all, I use the gym to get my sorry hide outside.  Right now, I try to cycle about 50-60 miles a week, normally on weekends.  Two weeks ago, I did the Seattle-to-Portland which is 200+ miles over 2 days.  I do it in order to make sure I train enough.  I did a personal best.

BUT.....I walk a minimum of a mile each weekday.  This spring, I learned to run and now do 2-3 5k runs per week.  I walk on the days I don't run or cycle.  I also do a ton of crunches on an exercise ball and a routine with 10 lb free weights each weekday.

I try to plan my rides ahead.  A 25 or so mile group ride on Saturday to see the air show.  Not sure what on Sunday.  The following weekend is a group ride of ~30 miles and also the Tour de Peaks.  That has a couple of butt-kicking hills in in, and I will do the 50 mile course.

You get the idea.  In ski season, I do long x-country treks.  I hike too when I get a chance.

All of this works extremely well for me in managing my emotions and feel on top of my game.  Plus all the other benefits.

So much wonderful stuff to see, and so little time.  I will do the Olympic Peninsula mid-August.  Next year, I want to cycle in Idaho.

Great stuff......and so thankful I can do all of this. - Claire

ahdjdbcjdjdbkf

Thanks for starting this post, Gai. I am usually pretty positive but I'm getting into a depressed and hopeless state today- and yes, "statistics" are bringing me down. I too am a mathematician and am familiar with all the tricks of the trade when research comes into play. At this point, I believe in just giving myself the best chance each day by doing the best I can and also enjoying. But, today is not my day. A recent infection in an implant sending me back to the O/R just has me worried about what other unexpected bad things and bad news is in the offing for me. Plus, everything I have been through has inhibited my exericise. I've packed on a bunch of weight in recent months. My profile picture was shortly after reconsruction when I'd been feeling great prior to surgery, had my weight where I wanted it and my new boobs looked great. Now I'm an overweight uniboob and my hair looks like shit!! There were some pictures of me from a party the other night and my boyfriend didn't want me to see them...he was looking out for me. He loves me but he knows I've gone through a bad metamorphises and I'm not at all happy. But, for tonight I will eat healthy and not overeat and get out for a walk - no running, cycling, or weights for me since I just had surgery 10 days ago. I'm scared I'm going to get really, really depressed before this round is all over. I do try to remember I'm still NED and that is pretty much everything. With that things can still turn around. But, I'm kind of tired at even constantly fighting to see the bright side!

Claire_in_Seattle

Maria.....I know all about the hair thing.  Takes forever, and now I think someone fertilized it!!!  You will get there, but I soooooo get how long it took to get my "look" back!  I love it now.

Reminder that makeup is your friend.  I got a number of makeovers, and now look much better that way.  Plus colors that do something.

I am off in a few for a run.  That is, if I don't expire first from the heavenly scent of the duck legs I am making.

Don't throw out the clothes you like.  I didn't gain weight, but I did lose some of  the flexibility in my feet.  Running has cured that, so I can now wear my fun summer shoes.  I am SO glad that I hung onto them. - Claire

PeggySull

Mariasnow,



It is very hard to get through the journey from dx to end of treatment. When bodies/doctors throw a curve ball and there are complications it is so much harder and I think that's where it's been lately for you.



It can happen to me as I approach my revision surgery (implants).



Because so much seems out of my control I hang on to eating right and exercising because those are things I have some control over. It usually takes six weeks of daily exercise to become a habit and to motivate motivates me. if i can get there then i miss exercising. i also joined the Wednesday weigh in thread on this board. it. Feels like a fee weight watchers group with no judgment.



hang in there!



hugs,

Peggy

InspiredbyDolce

Mariasnow,

It's okay to have a down day once in a while.  And if that is today, then go ahead and do whatever makes you feel good today.  Whether that is ignoring all your phone calls, or having your favorite treat, or crying.  Just know that today is going to be your challenging day, and know, that tomorrow, will be a better day.  It usually is.

As far as changes, don't make any committments now.  Wait until you feel better, and then start a list of what you would like to do.  Then each day pick a couple of items from that list, and mark it off as you complete them.  This will help you feel like you have accomplished some goals for that day.  Each day you can repeat them, or build upon them.  A sample list:  eat brocolli / walk around the mall 5 times inside / find a new easy to make recipe from the internet / get sunshine / eat two pieces of fruit /.  Then pick a couple of items that are easy to do that day.  And then just keep doing this every day, until you get to where you want.

So I know the list sounds cumbersome.  But it's a way of remembering what things you can do to help prevent a recurrence, while reminding you that you don't have to do everything.  Just one thing helps.

Regarding your look, just know and realize it's only temporary. The main thing here, is that you no longer have cancer inside of you, and that brings you more happiness in and of itself.  Everything else will work itself out in time.  Your hair will grow back, your reconstruction will be revised, and you will be back to feeling great.  Visualize how you will look in 12 months time, and then each day do something small to help you get there. Let all the things you are unhappy with, be a victory to you that you have surpassed what was needed to get healthy!  You did it, and you took action, and you are healthy now.  And each day that arrives, you are one day closer to having the image that you want.

Don't reflect too much on the past of how you look, but rather shift your focus to how you 'want to look' in 12 months.  I say that because it will allow you to take more control, and becomes more of an active pursuit, rather than a wishful one. 

If the stats are worrying you today, find a member within one of these forums with a similar diagnosis as yours, who is 10, 20 or 30 years out.  Use that person as a reference validation to keep you looking forward.  And remember stats are usually compiled in terms of disease and treatment, so a base reference point.  Anything that you do to improve health, can reflect any of those percentages, into a better percentage.  Use a stat as only a starting point, knowing that each thing you do can improve that number.   

Have faith, as you are also being treated pro-actively with Herceptin. That has to feel great knowing that you are on a medicine that is known for reducing recurrences.  You are in good hands with your treatment, past, present and future.  You will make it through this, and you will be a long-term survivor.

Sending you a hug ... but you don't have to accept it, because today is your day to do whatever it is that you want!  )

ahdjdbcjdjdbkf

Thank you so much Claire, Peggy, and Debra! I am having a rough go of it and pretty much no one around me can take it anymore. My sisters, friends, and boyfriend just want everything to be OK and they all want me to be the old Maria. I was angry about the lack of support but I'm going to take the subtle and not so subtle cues that I need to get a bit more positive and not talk about my hard times so much. I went shopping on my lunch hour today and it broke my heart. I was so fit before my diagnosis. I have never seen my body look anything like it looked today - completely out of shape, cellulite, a big stomach, one boob, and my hair just looks awful. I tried on clothes a size bigger than I have worn for the past 5-6 years and even the bigger sizes looked horrible my stomach is so distended. Still, I did get off my but and walk for an hour and 45 minutes last night down by the beach and looked at the sunset and tried to generate a few positive thoughts and ideas for positive actions amongst my fatalistic hopeful thoughts. Because I don't have cancer I can rebound - this is all just kind of a hard pill to swallow. My boyfriend has not so subtly let me know my looks have gone down hill although he is so sweet and tries to be positive too because he is so happy I'm alive and wants me to stay positive. He had LOVED the super short haircut on me but now he doesn't think it would look so great again and I should grow it...that was after telling me for months to keep it - translation, it doesn't look good with your weight gain. It's hard to envision a year from now and that I will look better ever....but I will work on that one. I really will. I was scared of what would happen to my body from cancer and treatment but in terms of my appearance and aging it is SO much worse than I even imagined. Surgery is now just a week away. I'm grateful I don't have to stay in this state longer. I pray surgery goes well. I'm really struggling with all these changes and hardships right now. I'm staying out of dressing rooms for a while. That was JUST AWFUL.

ali68

Mariasnow, my heart goes out to you because i felt the same. I had cold cap to save my hair and it didn't work well so looked very funny indeed.

My whole body looked and felt like an 70 yr old and i was very depressed. My face looked so ill and i had terrible side effects from all my treatment.

12 months later and my body is looking like it's old self. I can't walk and as much but i'm building it up everyday. I now have eyebrows and lashes and a shoulder length bob which is thin but growing well.



What i'm saying is yes it horrible but you will be your old self. Give yourself time and walk everyday.



My DH was the same and he told me to stop giving up. It's bloody hard but you can do it.

Colt45

Mariasnow:



A BC diagnosis makes you go through SO much. There are so many hurdles you have to get over, it can just get overwhelming.



There were times during my wife's journey where it it was like: "geez, what's going to happen next!!?"



There were times when we couldn't catch our breath. This was going on... That was going on... And then something else.



It felt at times like we were in a tailspin we wouldn't get out of...



I can relate to the "who the HELL is that in the mirror" syndrome.



15 years ago I was experiencing paralysis from a car accident. I needed anterior spinal fusion as an emergency surgery. I was scarred, jacked up on Percocet and demerol and steroids. I couldn't walk. I could barely hold a pencil to write. Ugly, swollen scars and skin. I was a stranger in the mirror and was a shell of my physical self.... At age 31. Slowly, I recovered and crawled out of the abyss.



You are on a journey, Maria. A scary journey that tests your sanity, trust, beliefs----your resolve. But you are coming back. You are pulling out. Every day is a day closer to you reclaiming your life. Just keep moving forward. Another day survived? Another day closer.



There IS a finite amount of days you have to survive this.



It won't always be like this.



It will get better.



Push FORWARD.



Another day closer.



This is a bump in the road with a bunch of lousy, crappy little bumps around it. It's amazing how many crappy little bumps there are!



But you will survive them all. And the hair will come back and the scars will fade.



And you'll be on the other side of this horsesh!t eventually.



It will come. You will get there. This is just temporary. This isn't you. This isn't how it's going to be. You will leave this chapter of your life behind.



Hang in there. Finish today. Start tomorrow, then finish it. Each day you are closer.



God bless.

ahdjdbcjdjdbkf

Thanks so much Ali and Colt. You guys really came through when I needed it. I had such a hard day but I did some positive things anyway. I went for an 80 minute walk down by the beach to get my endorphins up and get my body a bit stronger before my next surgery. I also tried to just let go of some things. Right now I am where I am. It was unexpected when I was doing so well back in February after my exchange but it is July now and a lot has happened. I am going to do my best to look forward. A month from now I will be 3 weeks past surgery and able to get walking again.

smo23915

Mariasnow I wish I could crawl through the screen to come over to hug you, but instead I will keep you in my prayers tonight.  And send you a hug.
It is hard, I know I also have good days and bad days.

Colt, your the best in your words and support of all of us.  Your words are very wise, thankyou for sharing them.

Sharon

Colt45

@smo23915:



Any wisdom I share has been bestowed upon me mostly by some very smart, compassionate ladies who have come to MY rescue (from myself) countless times here.



Intermingled with that are some life experiences that are relatable on some lower level.



My greatest challenge is to TAKE MY OWN advice.



I just keep coming back to the fear. I know what I say to others to comfort them is real... but the fear is still percolating. Then someone comes along and pulls me off the ledge and I'm ok... for a while. Right now that "while" is a couple days----at best. Sometimes just an evening. Some day, that "while" will be a week. Then a month. Then 6 months. And so on. But right now I cycle between fear and hope daily. Hourly.



I read on some thread here that a woman asked her oncologist: "What do I need to start feeling better?"



The answer was simple.



"Time".



I get that. We are RAW. It doesn't take much to plunge me deep into fear.



But I realize that climbing out 'emotionally' takes time.



So I take it by the hour. By the day. And I hold out hope it gets better. With time. There are plenty of ladies here who would tell you it absolutely does----and even more who don't come here who would tell you the same.

Lily55

Colt - I do think I AM better than I was, just a few months on from feeling life just was not worth living with such a level of terror and panic......but now I really do realise that none of us know how long we have and if I spend now feeling so anxious I am doing it twice over and before I may "need" to, if I ever do need to to........for me the key was to talk to someone and i am lucky enough that my therapist encourages e-mails between sessions so I get to offload to someone who I know "gets it" whenever i need to..........and I no longer feel I am living with PTSD as I was, yes I get the odd days but notthing like before, of course I took myself off hormones and am now back on some different ones so am hoping they don´t generate problems........and I exercise hard for four hours per week and if i don´t I know it in my stress levels.....

Big hug for you....xx

LtotheK

Heard something really helpful the other day.  In order for a bad experience to retreat, we need three good ones to replace it.  I am thinking about all the good things that have happened since treatment: tenure, exhibitions, trips abroad, a general sense of gratitude and less stress.

The issue is trauma.  Trauma is a record, it's a lived experience, it is a trigger, among lots of other things.  I have PTSD, which I've shared here.  That is different than an "aw shucks, that sucked" experience.  It's the fight for life.  So...my question is, how many good experiences do I need to replace that trauma?  Probably I will never know.

What I do know is time has helped.  I feel less obsessed than a year ago, and some days, I even forget about it for a while.  But it is with me all the time.  It is with me every day that my phone doesn't ring with an adoption placement--is cancer the reason??  It is with me every time I plan a trip--should I book it after my mammogram in case I have cancer again??  It is with me every time I am with my young peers--will I live as long as they do??  It is with me every time I think of my success--will I live long enough to write that book/finish that film/do that grant??

That is what trauma does.  It turns an experience into a fight or flight response.  It has no logic--I can't override it with my general feelings of gratitude for everything amazing that has happened in my life.  It's just the raw, chemical stuff of being human.

Talking and helping here helps, and that's what we are here for each other to do.

Srh242

 Hi :

  First post here, I agree with Ltothek this fear never totally goes away. I have a one year old and it breaks my heart that this happenned.

wildrumara

I know this probably isn't what some of you want to hear, and it certainly isn't profound or compelling,  but I go back to the words from my oncologist, who is also a cancer survivor....she looked me in the eyes after all my treatment and surgery was complete and said "GO LIVE YOUR LIFE".....I hold on to those words when I am thinking too much about the what ifs??     We are just dust in the wind.   I have to keep thinking that suffering, illness, and tragedy are all part of the human condition.  All of that didn't make much sense to me before my diagnosis, but it does now.  I love my children and there is nothing more that I want than to grow old with my husband and my three kiddos, but maybe its just not in the cards for me......but maybe it is??   All I know is that the more time I waste worrying, the less time I am living.   Love to you all! 

B123

Gai, I stumbled across this forum you started and I cant thank you enough... brings tears to my eyes because I am now 2 years out and still very guarded and very scared.. I just wait for the shoe to drop.  I hate living my life like this and worry at every new ache or pain.. I dont know how to move on??  I dont know that I can?  I have children who need me and I need them and want to enjoy every minute with but I have such a wall up??

doxie

I've been reading this thread from the beginning.  It's been running concurrently with my decision to get nipple reconstruction.  I wouldn't consider reconstruction until I felt that cancer wouldn't recur in my breast.  I had a partial mastectomy.  I've been amazed how getting the reconstruction has helped me move on.  I feel I've crossed a bridge and I'm ready to take on the rest of my life.  

I've taken a lot of little steps towards this, but the big step of reconstruction pushed me past the fear of recurrence.  Now I really believe it won't return.  

We need to be patient with the process of recovery.  I'm almost two years out of my diagnosis.  I was afraid I wouldn't get to this peace ever.  It feels so good.  And I recently had to get an xray to check for mets in my hip - clear thankfully as I believed before the xray.  Didn't freak out over it.