Now that we have this new board, I would like to hear from people about how they deal with the fear of recurrence.

I was declared clinically disease-free back in early August. While this was great news, I find myself increasingly preoccupied with the fear of recurrence. Some of this is tied to the fact that some of the late treatment side effects are just starting to hit -- i.e. radiation fibrosis in the neck, some muscle spasms, etc. Since I don't know what I am supposed to feel like post-treatment, every new twinge or symptom brings up the recurrence spectre. (I was at my CCC yesterday, and all my symptoms are treatment related side effects)

How do others get past the recurrence fear?

Hi Jeff,
If you ever get that resolved please let me know.I am going thursday for my 5 month check up and i am a basket case now. I got things going through my mind that are not good and not smart.
paul

Hi Jeff,
There is a place on this board called coping/anger/fear, etc. that would be best to post this thread on. This one is for members that have been diagnosed with a recurrence. I just want to keep this on track, as I think it would help those of us struggling with this cancer again.
With that said, I went four years with clean results and never had a day that I didn't at least think about cancer coming back. The fear of it lessens over time but doesn't go away.
Minnie

Hmmm..
As Paulie said, if you ever figure this one out make sure you let us all know your secret!

I'm 9 months out and still wondering what's the result of treatment or whats could be the return of my little enemy!

I think i've resigned to the fact that you can't keep worrying about something you have no control over. & you can't keep focusing and being defined by the cancer.
I'm me... not "the girl that had cancer"
So there!

As has been said many times "you can be cancer free but you are never free from cancer". In some ways it's like a bad breakup - the further away you get from it the less you think about it. It was a long while until I could sleep well at night. I still have moments of panic when my dentist tells me I have leukoplakia or develop thrush out of the blue. Even post nasal drip can set it off (the fear). Sometimes I have to take mini breaks from the forum to get away from it (I still visit almost daily to see if there are any fires burning.

I give it far less headspace now...

As Gary states above so well, I don't think that anyone is ever totally free of the fear of recurrence, but it does lessen with time. Here's how I know it has with me - the first time I had to order new disposable contact lenses, which was right after I had recovered from my surgery, although I usually order a 12 month supply if I have had a recent eye exam, I could only bring myself to order 6 months worth... I just was afraid of what might be in a year, and couldn't plan that far ahead. However, when I needed to re-order, I took a leap of faith and ordered a years supply....

But, hardly a day goes by that I don't look in my mouth and at my tongue with my new friend, my trusty little flashlight... just can't help it...

I'm in the middle of treatment for a recurrence. My recurrence comes not much more than a year after my original. It was discovered through my 'one year' follow up PET scan, as a mets to lymph nodes. I haven't even gotten through treatment for this one yet and I'm already finding myself worried about recurrence (MORE recurrence).
There is an Ironman triathlon race next summer that I'm wanting to do (I've done them before) but I find myself wondering if I should put down the money for the entry fee and take the chance that I'll be healthy in June. I'll be done with treatment in about December....so I SHOULD be healthy again in June 2008, but that's assuming no more recurrence.

I'm sorry as I'm probably not helping ease your fears, but the recurrence chance is something we all face and I think sometimes it can be therapeutic to just talk about it. Hopefully you can keep it from dominating your life. I will say that while I think about it a lot, I don't let it overcome me. It's in my thoughts and concerns, but I don't let it debilitate me. I still have too much living to do!!!

Best of luck to you
-Steve

Steve
While I haven't suffered a recurrence (said with all fingers crossed) my battle taught me that I have to keep "living"...that means planning, and doing, things I want to do, and not hesitating or saying to myself "better wait and see".

It gives you a goal to shoot for; that's hugely important in everyone's life, regardless of what circumstances you find yourself in.

The biggest mistake I made during treatment was putting my life completely on hold. When I came through the darkest parts of recovery, I found that all of the things I'd wanted to do a year earlier had passed my by, and I had no plan for "now".

I'm still nowhere near 100%, but I set a goal to return to work, and I did. I am effectively disabled from the surgery to my leg, but I work full days, and travel...now I do it with a cane and a segway to get around.

My father is in end stage lung cancer, and we will likely lose him in the next month or so, and my father-in-law had surgery for aggressive kidney cancer this past week, and the prognosis isn't good. Even with that on our plates, we are planning a trip with our adult children and their spouses to China in November; I plan on having a family portrait taken on the Great Wall for Christmas cards.

That's not intended to sound callous about my familie's bad luck with the beast, and the sorrow it has brought to us; we will go to China because we (I, especially) need to follow through with our life plan. After all, I don't know what next month, or next year may bring, and I would hate to face another round with the beast knowing I'd put something else off in anticipation of more problems.

I say sign up for the Ironman, and use it as your goal for recovery. Think of it as a reward to yourself if you need to, but do it. The achievment you'll feel will be the sweetest victory you've ever enjoyed.

my two cents...your mileage may vary
Wayne

Wayne: You are such an inspiration...Your words remind me that 'putting our lives on hold' is exactly what we are doing. Today that stops! Thanks for the wake-up call!

Lois & Buzz in NC

I worry all the time too ,if it's going to come back or not.If i get any kind of bump sore or anything i'm calling my Doc and going to see him.I have been cancer free for 3and a half yrs.so far.I still have neck spasms all the time.I take ativan to stay sane,i just pray all the time that seems to help me alot and coming to this site helps me so very much,i'm so glad i found it.Hang in there.
friends
lynn

Jeff,

Fear is normal. Ditto to all who have occasional moments of impending bad news. I have always got wound up prior to every follow-up. You will never not think about this again. The frequency, time and recovery from fear will decrease overtime.
Prior to your treatment you were preoccupied with absorbing sooo much information you didn't have time to focus on fear. Now, you have time to focus on what everything you went through was for. Accept your fear. Learn from it. It is a normal part of the whole process.

If you can figure out how to eliminate it, I too, would like to know.

Live, Laugh, Love & Learn!

Mike

The lessons this 67 yr. old have learned are quite simple [to say-not to do] and they are that we need to be preoccupied with each day as it comes and try to enjoy it to the fullest, as if it might be our last. "corney-trite"-maybe- but if we could poll those we have lost- I'll bet they would agree. Amy in the Ozarks

Hi Jeff, I don't think you ever get over the fear of recurrence, but eventually you get some perspective and it doesn't consume every waking moment. It was the worst right after treatment ended because it was the first time we could come up for air and think about it. It felt weird not to have the daily appointments, unsettling.

In the past year we've calmed down a lot and learned to go with the flow. Jack's had 3 biopsies and an endoscopy, things that lit up on his PET scans, unidentified "areas of concern" and more doctors appointments than I can count. Living with cancer is very different than being treated for it and we each have to find our own way of making sense of that one.

You'll find your balance at some point. Regards JoAnne

I'm not sure I have anything to add, but ...

Shortly after my son's surgery, when his surgeon and the RO were sparring about whether he needed radiation or not, we had a lengthy visit with the RO. He gave us all kinds of facts and numbers -- and even used the "D" word (death, die, died) a few times.

At the end of our time with him, I asked, "So, what do we do now?"

He smiled and said, "You go out and enjoy the day."

Ultimately, my son decided against radiation. He goes for monthly checks with The Surgeon We Kind Of Think Of As a God and his first post-surgery CT scan is this Friday. Do I worry? Does He? Yes and YES!

But each time I ask myself 'What If?' I find myself answering, "You go out and enjoy the day."

And, somehow, that makes it a little better.

Best of luck to you,
Darcy (Matt's mom)

I look at it this way:

I'm a tough guy, I'm cured for now, and I can take whatever comes.

When I noticed a lump in my neck a short while back, I wept for a short period of time, then I saw my RO and he said it was fine (just a shriveled up salivary gland) but to keep my eye on it. That was about 6 weeks ago, and all is well.....

So now I'm back to being a tough guy.

Best wishes,

Chris

Jeff (etal),

Since I haven't hung out with y'all as much as I used to I will jump on the soapbox for a bit. Life is never a guarentee so take the time to MAKE THE MEMORIES!! Get your family portrait on the Great Wall, stand on the tip of a volcano in the Andes Mountains, trout fish on Chiloe Island, look at Mount Fuji from an airplane and the active volcano on an island in the Pacific Ocean, visit your best friend from grade school through high school, attend family reunions, go, go, go.

You never will live life as it was but live the life you have to the FULLEST. I just saw a man last week that is in his upper 80's and he rode the Tour de France route immediately after Lance won the last one. He fell and broke his hip but that's another story. He rode the Ideterod a few years ago.

As my wife always points out FEAR means False Events Appearing Real. Don't worry about what something isn't. There are trained professionals that will tell you when and what it is.

Check out Leroy Sievers daily blog. Go to NPR.org and search for him. It is great reading every day and not very long.

Wayne, please reserve an extra Christmas card for my family. I don't know that I will make it to the Great Wall ever but I would certainly enjoy seeing you on it.

Ed

Hmmmm---yup! Decision just made. I feel okay enough, may never get this chance again---no, that's wrong, I WON'T get this chance again---so off to California next month, WITHOUT insurance, because it's 'ungettable' at my stage and the 1 out of 23 companies (specialist ONES!) QUOTED

I can't get cover for my husband, so I've told him if he dies in Spain I will have him cremated and bring his ashes home. ( otherwise think of the excess baggage)
Sunshine (California sunshine) love and hugs
Helen

Helen,

I planned a similar trip right after my surgery 10 years ago. My wife was concerned about the same issue, she was scared. I in my off sense of humor only booked one way tickets and said I'd book the return tickets if I was still alive and if not, I told her to book a return ticket for herself (first class) and give them my death certificate so it would only cost half and book me to fly cargo. I ended the conversation with, "Think of the money you'll save!"

Fear is fear. We all have to deal with it at some time.

Cheers,

Mike

O.K.

I have a new goal. Chinese Christmas cards for my OCF family...

This one's gonna be EASY :^)

Wayne

Hi, Wayne, I want one too. Amy in the Ozarks

Wayne, I'd love to recieve one of those cards or even an e-mail when you are there.

I admire your strength and attitude.

Mike

If you can learn to seperate the fear from the way you approach life in general that's when the battle is won......in my opinion anyways.

I am facing surgery for a new tumor under my tongue. It's going to be tough and no guarantees that it will work, although in my heart I know it will. Even with this facing me, I'm still making my plans for a trip to New Orleans in November for Thanksgiving, New York for Christmas, and a huge trip to Europe with my girls midmay/June timeframe. I refuse to do any differently. I learned that lesson four years ago with my first battle. I just finished looking at motels in New York...........GEEZ, can we say expensive??? But, I want to skate in Central Park, see the tree at Rockerfeller, and see Times Square.........and I'm going to. I want to see the Eiffel Tower, see Spain, Rome, Italy..........I want to see ALL of it. And I will. At least that's how I'm planning it and that's how I'm living it for the moment. Half the excitement is in the planning............so THERE cancer, you can't steal it all!

Live, Love, Laugh.......it's the decor of my home now, I have that saying all over the place and it's how my house stays centered and focused.

Minnie

And Minnie.. I would LOVE to make the 3 hour drive to say hello to you and your family while you are in NYC !!!! CUZ I know You will be there TOO !!!!


Shar

It's a deal Sharlee........and I'm going to hold you to it! Central Park, skating.......you , me, all my kids, all your kids.........it will be grand!
Send me your phone number so we can set this all up, when I make plans I'm relentless and will make them happen!

Minnie

And Wayne ..I too would love an Xmas Card as I am sure I wIll NEVER see the Great Wall !!! Not due to cancer yet due to having 5 kids and NO Finances to accomadate that one !!! LOL !! But for me living meant going back to dancing ..somthing I love ..I could have taken a position as a cheerleading coach , but I will tell you that FEAR kept me from it ..MY what if I get sick again ..then what Happens..the kids will have no one and then what ... Some times I think the fear is the worst part of all this because I dont know how to change it or make it better !

When you boil it all down guys,it is no different for anyone really.I am planning to spend a month in Abu Dhabi at christmas with my brother.
The tickets are booked and paid for,but whose to say i will be here at christmas,or even tomorrow .
Life is a lottery and we all have to live one day at a time with or without cancer

No truer words have been said on here Liz. I'm 46 and who knows if I'll see 47? I could get hit by a bus or could die of a heart attack...........nothing to do with cancer!

Hope our having a great weekend..........mines been fantastic!

I agree wth you both there !! Well If anyone knows me and I am sure you all are gettin to LOL.. We all know that I have the WORST LUCK !!!! SO somthing Weird will def happen to me !! LMAO ..LIke I just started Back Dancing ( and asssitng with coaching cheerleading ) and tried to do a round off , which 20 years ago I could SOOO DO !!!, Well Not so much anymore ... LOL and Now Jumping on the trampoline .I haven't tried that due to fear..I am one of those Jump once FLY OFF !!!! hahahaa

The truth is ..we don't know what tommorrow brings and we have to enjoy as much as we can today, while after having this disease I def have more fear in my life then ever ( over everything) I am starting to build more courage and def trying to enjoy everyday , when I am not laid flat out after my round off attempts LOL , it was quite comical I might tell you though !!!

I have a lot of anger ..

Hi Herson....

My Dad has oral cancer. I know what you mean about having a lot of anger. I could list all the reasons that I'm angry, but that would take too long.

Sometimes when I feel angry I have to turn my focus on what I have to be thankful about. That list is longer than my angry list. You may want to try it and see if it helps.

How is your mom doing?

Joy

Herson,
I suspect you're not much older than my daughter, Megan. She's 23 and she is the one that is so angry about all of this. She's big on keeping journals and writes all her feelings down and then will make sure she leaves it where I can find it and read it. We communicate that way. He anger overwhelms me sometimes and I wish I could help her get rid of it, but it's how she feels. Her biggest problem seems to be that she doesn't have anything or anyone to BE angry at to SHOW her anger to or to take it out on. I think she's dealign with it very maturly and will work her way through it but I just wanted you to know that you're not alone with your feelings. I'm 46 and for her to see me, who is a very young 46,go through this plain and simply pisses her off!

Joy ..

moms is okay, cancer has come back but in her neck, only got confirmed 2 weeks ago .. before this we thought it was all clear .. its been a year since her surgery .. n now this .. there might be traces of cancer in her lungs ..but they plan on running more tests ..


Minniea ..just turned 25 .. i dont talk about it .. jus walk around with it .. im close with my mom but i just cant talk about it, im there, i experience it all but i dont speak about it with mom .. ..

she says this is life ..

Herson,

Sorry to hear that you mom is going through this again. This is a good place to talk about things if you don't want to talk to your mom about it.

Please keep us posted.

Joy

Herson,
If you can't talk about it with your mom honey, have you thought about talking with others that are on your side of it, such as my daughter or another person whose mother has cancer? It's tough keeping all those feelings in. If you are ever interested in talking, email my daughter, Megan, at [email protected]
I bet she would LOVE to have someone to express herself with, she works hard at staying upbeat and optimistic with me. Would do you both good to talk it out maybe??
Minnie

Hi Herson. I'm also 25 and watching my dad (60) go through this. Feel free to contact me. [email protected]

Good luck.

Herson,
I am here for you. My mom is 60 also.... Feeling like you are responsible for your parent's life and well being is harder than I ever imagined. Send me a PM if you want to talk. You and all of the caregivers here are in my thoughts and prayers, along with all of the people we care for every day.

Amy

I just had my check up and it turn out OK. I had chest X-ray scope down the nose. Dealing with the fear of it coming back for me fades in and out, while one is having a good time living the life to its fullest, the site or the feel of a tumor, can put one right back in toilet, I think its because of what we all went threw the first time, the thought of doing it again, or even hearing about someone getting it back makes me angry, and there is nothing wrong with being angry, sad or whatever else goes along with it.
Hearing my Doctor tell me the first time you have cancer, sent emotions flying all over the place. Hearing a second time I think would be somewhat the same as the first. I have a good freind who cancer has come back she is going chemo again having very hard time of it. Just buried another on Monday. I went fishing today, while I was out there I just came overwhelmed with emotions cried for about hour, I think it just all catches up then comes flowing out, I didn,t get any fish but I did feel better.

I am so scared. I am 21 years old. In fact, I only celebrated my 21st birthday very recently. I am going to see a dentist at my earliest convenience. I have not been yet, so I have not been diagnosed with anything. Yet. I have a single white bump on the side of my tongue, and several red bumps on the surface of my tongue. As well as a white coating on my tongue. The possibility of being diagnosed with oral cancer has scared me into diarrhea.
I pray and pray that it is something else.I thought that I was relatively unafraid of death, until I discovered he may be in my near future.
How do you guys deal with the fear, the uncertainty? Life is so unfair. I never smoked, I never drank. Life is so unfair. I wish I at least had a shoulder to cry on. I am a young, black man, and I am supposed to be tough, and never scared. Well guess what? I fell like crying and bawling and not give a shit who sees me.
I wait most impatiently to hear what the dentist will say. Please pray for me.

Hey Scared,

Other people will get on here soon and tell you that you need to get to the dentist or an ENT (ear, nose, throat doctor) as soon as possible -- like today even. There are a lot of things that look like oral cancer, but aren't. I pray you have one of those. But even as I'm praying, I'm warning you:

Your dentist will probably think that it CAN'T be cancer because you are so young. It can be. My son was 21 when he was diagnosed. He had never smoked and rarely drank, and that made his doctor even more sure it couldn't be cancer. Two months went by with my son's regular doctor prescribing this and that before the day he could feel the tumor.

So get to the dentist. Listen to what he/she has to say. If they say it is not cancer -- GREAT!! But if it's still there after two weeks, go back, or make an appointment with an ENT and insist on a biopsy.

Come back here or PM me and let me know what happens, k?

-darcy (Matt's mom)

Thanks for all the support, I havent been on lately .. but .. mom has started radiation and chemo, just finished 4th week .. ..

Jeff if you ever find out how to deal with th fear Please let me know. Dr Ozer checked my tongue where it has been hurting so bad, into my neck and in the ear like the side where the OC was. He says it's possible that I have it again. Talk about fear. Man I have it but am trying to ignore it until I hear from him about fridays PetScan.I know what you fear and respect the fear . If I got it I got it and will do what's needed to cure it again. I was feeling like a whimp instead of some tough old ass . LOL