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More Frequent Scanxiety

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Now that I have Stage IV, even though NED at this point, I'm now on a 3-month scan schedule. I have scans a week from Monday. No symptoms to speak of, but starting to feel the anxiety of upcoming scans to start.

I think I'm starting to get addicted to anxiety. Even when I hear I'm clear, it doesn't bring much relief. I keep expecting the other shoe to drop. I'm getting tired of the expectation of the return of my cancer. It's not like finding a met will make me feel less anxious either!

The solution is obvious, but hard to practice. Gratitude for today. Do the next indicated step. Keep things in perspective.

I have this other annoying "habit". Once in awhile I just wonder, so what will it be like dying of cancer? Or I wonder, what will it be like telling X (insert name of family member or relative) that my cancer is back? Or I wonder, do I want to tell people? Or keep it to myself? Do I want to do treatments, or accept my fate and not take the death of a million cuts?

This is the only place I can talk about this and get anything like understanding. You people are my heros. My heart is with you.

Todd

angec's picture
angec
Posts: 923
Joined: Mar 2012

I understand, Todd. I think once you get cancer then all of the things you do are logical.  ptsd is a common thing too.  I guess we just have to take one day at a time and try not to overthink it.  it's funny,  but how often do we say, what if there is a cure tomorrow?  What if there is a cure tomorrow?  Don't worry, your scans will be ok.  change your thought process and move onto something to take your mind off of things.  A cure tomorrow, anything is possible!

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Todd, I understand you. 4 years ago I had my first miscarriage, which was traumatic to me. After that I developed some strange symptoms, which lead to believe Icould have MS. I was terryfied at that time, and due to that experience I became a hypochondriac. I also was living every day expecting shoe to drop. I was not trusting my body. Fear consumed me. I lived like this for 2 years. Then I just got tired of this, simply tired And disgusted. I was wasting my life... After that realization I started to get better. 

My hypochondria returns from time to time, but not as severe anymore. 

I believe that you will also get tired of your menthal condition soon, and will want to get better. Perhaps getting rid of constant cancer thoughts would help? When I suffered from health anxiety, I was readind books with technics how to get rid of obsessive thoughts about your health. Could you benefit from these technics too? They could teach you how to swifch to smth else... Every day spent without cancer thoughts will be a good day.

good luck, it is sad that you are struggling, but it is possible to make things better.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Makes me think of Tex's perspective. It is worse when flirting with NED. When one knows of current mets and gets a scan, the unknown is less scarey. The scan kind of confirms our status. My last scan and mri was a bit different because I had been so sick I couldn't expect much change. It was more like, "how much worse can I get?"

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

First of all, Todd, I am sorry you are going through this anxiety. So I ask, what purpose does anxiety offer us?

Maybe, for some of us, it is because we want to have a PLAN, a goal so we have some certainty.

That security is such an important part of being human, right?

SO.. not having control can wreck havoc on our mind and bodily systems.

Don't we need that ENERGY and SPIRIT for living anew?

Odd how crappy things can force us to think differently or take another road on our path.

For me, whenever anxiety gets in the way of my peace, I say over and over again, the Serenity prayer.

Now if one doesn't believe in GOD/PRAYER think of G.O.D as good orderly direction is just an alternative.

 

(God) Grant me the serenity to ACCEPT the things I cannot change

the COURAGE to change the things I can, and the WISDOM to know the difference.

 

Yes of course we want to be PREPARED, so we can have a concrete plan right?

Maybe try breaking it down into smaller steps, not only a day at a time, rather embrace moments.

For me, I  will  have those 'human moments" of fear, anger, hurt, frustration, but limit it to a FULL 10 minutes

of yelling (into a scream jar) hitting a pillow, doing the silent scream (when at work for example)

then move on to living with a new plan.

I try to focus on what I still HAVE, on my "blessings' are..for all those little things, that nature, love, people

environment offers.

Too preachy? Sorry..but as you know, once your life has been turned upside down, we often DO

appreciate life even more.

 

Hugs to you and yours my dear one~

Jan

RMolinaro414's picture
RMolinaro414
Posts: 43
Joined: Sep 2014

I have my 2mth follow-up for my liver lesions tonight at 6:30pm. Yes, 6:30pm on a Saturday. Want to know why I asked for such a bizarre time? I'm "trying" to make this a positive experince. My husband and I are going shopping for my sons 4th birthday beforehand - hitting up the MRI as if its part of our datenight and then going to dinner afterwards. My new intention is to try to keep this bug (that's what I call my RCC) as part our norm. If a shoe is to drop I'm going to reorganize and find a place it can fit in. Its not easy, but I was letting it consume my life. I'm still considered stage 1, but these liver lesions need to be watched because they do not show a clear pattern of anything. I don't know exactly what to say because I can only imagine your thoughts being Stage 4, but what I do know is that beautiful word NED. Try to swim the that and focus on what makes you happy. I wish I had something to say that would make your anxiety melt away. Hoping another clear scan for you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Except perhaps a cure. How wierd is that?

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Thank you. I wanted to hear other perspectives. It's why I post!

Todd

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Scanxiety, anxiety, worry, its all so exhausting!  Cancer steals the illusion of security.  No one knows what lies ahead.  Sometimes I think not knowing is better-more peaceful.  Once cancer is introduced that illusion is gone.  It is only human to worry when we have no control.  We have a friend whose two year old daughter has cancer.  No longer can they tolerate in the same way the mundane complaints of parents who haven't walked that walk, their illusion is gone. Their senses are heightened, not something they'd choose.

The serenity prayer has helped me greatly! 

I get what Footstomper means about not being ready for a cure--would be so joyful I think cancer patients can't imagine that relief and letting down their guard so much.

God Bless One  and All

Arleen

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

What you said about keep expecting the other shoe to drop. I hate that feeling. Especially with NED. It's such a hard thing to deal with because for all intensive purposes you should be feeling great but then you feel guility for NOT feeling great. It's such a catch 22. And nobody understands. Everyone expects you to be happy because you don't have cancer, it's gone, whoo hooo. But it is defiantly not that simple. 

I got a lot of this from my parents initially (they lived with us for a bit helping out after my husband's surgery,  I was a WRECK). They just didn't understand why I was so upset all the time because he DIDN"T HAVE CANCER anymore. 

My therapist is worth every penny. Even now with a good grasp on my anxiety (post traumatic stress quite frankly) I still go once a month. I need to make sure that I can cope with what may come along someday. After my mammogram scanxiety issue which resolved, I was very glad I had kept going. I had good coping strategies in place and didn't melt down and go nuts over it. 

Srashedb
Posts: 482
Joined: Dec 2013

Todd:

it seems like this cancer follow-up has a variety of protocols; my husband's oncologist didnt change the schedule which had been moved to ct scans every 4-5 months.

despite the additional mets to his spine which were treated with cyberknife, the follow-ups will be full body MRIs and CT scans to the chest. The oncologist sees this cancer as unpredictable but with spectrums. Although the cancer could go to other organs, his experience views it as remaining in the bones. Because it is unpredictable, the ct scans will continue but the bones will receive more intense follow-up.

he also explained that although the cancer can and does recur, the first two-three years are the most likely time-frame.

you are stage 4 because of the adrenal gland, right? Would the proximity of it to the kidney not mitigate the likelihood of more mets? My husband 's surgeon routinely removes the adrenal gland when he does the nephrectomy. This would indicate a strong likelihood of it being in the adrenal glands or is that not true? It's hard to believe that a gland would be removed absent that.

it's great that you can safely share thoughts about your death safely here; are your sons being more involved? Ours are very involved with their young families and truth be told, adults lose their parents so maybe this is just normal behavior.

our oldest was most attentive when I had breast cancer (he was a teenager) and our youngest is extremely sensitive and recently told his dad how scared he had been when he was going through the surgeries and hospitalizations.

your scans will be a relief to you; it seems that the adrenal gland greatly affected you.

Sarah

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

As I recall, you had a solitary met to the adreanal...which was removed, so nominally, you went NED.  I had a solitary met to the lung, which was removed in early 2013.

My first few scans were nerve wracking.  But what I found in time was to realize that all of life is uncertain.  What we do know is today we are good.  And, we are lucky the cancer was caught.  These are Bonus Days.  Treasure each of them.

Covey_748
Posts: 7
Joined: May 2015

I too am stage IV and I am getting my next scans tomorrow afternoon.  I am nervous and I just want to know if I am still NED or if my cancer has decided to rear its ugly head again.  I have not been a member of this forum for very long but I have follow you and few others on here and I am just amazed at your will to fight, your compassion and understanding.  I want to say thanks!  It is nice to know to know that you can come to a place where people truly understand what you are going through.

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

The only frame of reference that I have is before my first scan back in Feb/March.  Between my neph and that first scan, I remember having a lot of mental issues with hypochondria... I had this back pain (which is gone now, and was most likely from the downtime after surgery and then returning to work and stuff) that made me afraid for spinal mets.  Every little ache and pain was a "met."  "Do I have mets?"  

I can say that the first scan after that was a huge relief and my doctor's consistent belief in my low odds of recurrence have really put me at ease.  BUT, it doesn't ever really go away.  Above, Footstomper said he was prepared for the worst mentally except a cure... that's a really ironic statement because it's true that cancer just turns you into someone who is constantly thinking about the worst.  It's truly amazing to me how cancer can be the furthest thing from your mind, and then you get it...

And, yes, sometimes you think of lying in a hospital bed, looking up at your loved ones, and apologizing to them that you had to put them through this, that you weren't around for longer.  My wife is pregnant and that has been a double-edged sword.  Mostly it's taking my mind off of the bad stuff while I prepare.  On the other hand, I know that this "passenger" will now be with me forever and I have to find a way to accept that there are things that may be beyond my control.  

There is no way that it will truly ever be "over" for me.  

- Jay 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Todd, it is difficult to learn to deal without having scanxiety. Thing is you probably had control over some of your fears by the time you had the cancer show up again. I know it seems that you finally let your guard down just a little bit and then it gives you a reminder again. Trick is to show it who is boss! I always try to remember that it isn't just your physical health that is endangered by cancer, but your mental and emotional health. It can rob the best parts of your life if you let it. You are doing all the right things...have meetings with other cancer survivors, go to a therapist, participate here....but remember that worrying about it won't keep it away - in fact putting that extra stress on your body could weaken your system to have it reappear. Who knows?

Hoping you have great scans. I will be thinking of you. Please keep us posted!

Hugs

Jojo

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

It has been mentioned here that cancer steals feeling of security. I 'd like to add that not acancer itself does it. these are our minds who play rhis trick. When my hypochondria was at its top, I had no sense of security at all. Zero... I was sure I was doomed and obsessed about it. And I didn't have any physical illness then.

this leads me to believe that everything is in kur minds. We have the power to worry abd obsess, and we have the power to rewire our thinking.

scanxiety is normal and understandable. Constant obsession - not so, and should be fought against. I compare myself with y fiance, who was sick among us 2. He is much more relaxed and confident. It is me whois freaking ourt.

that is why I think we should take care about our mindsets, which can be improved

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014



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Todd

Since last August that I was told about my 10 cm cancerous tumor, my whole life changed, a dramatic Irreversible change. I spent first three months crying, hopeless, frustrated and depressed. I couldn't spend even one or two minutes without thinking about the worst possible future consequences, even at nights. After my first CT with NED report, I could laugh for the very first time after the diagnosis  So became little hopeful  but those terrible thoughts were still in my mind almost all day long, my next CT with NED report did not help me feel better either. So I finally made my decision to talk with a therapist, a great decision I'M PROUD OF.

His first question was very simple, what is a fun thing you do daily? I looked at him and cried, all of the sudden I remembered that I have spent last 7-8 months not doing anything but going to my office and sleeping, I didn't even work, I spent minutes and hours staring at my office's window and cried. So I had nothing to answer him!!! And the worst part was that my mind was too busy thinking negative, to remember how I used to live before the diagnosis. I used to be a very athletic, always laughing, every week camping girl who read, dance, told jokes, did jogging, went to theater and cinemas on a regular basis!!!! BUT in all those months post surgery I hadn't done any of them.

He told me that if we don't decide to spend our energy levels on something positive then our minds decide to spend it on obsession which leads to depression and as long as I am obsessed with this cancer, I can't live my life and seize the moment.

 He suggested me to look for what makes me happy, something which I like doing it without expecting to gain any results from it, It's what "fun" is. It needs to be on a regular basis, daily routine is the best. For example learning a new language or studying at university isn't fun because you expect a result and that expectation brings "stress". So in this case our energy finds its way to get out of our body in a positive way. I did so; I started writing my previous journeys' itinerary with all details I remember to put it on my weblog, so it might be useful for someone else. I also registered in a dance class so I listen to happy energizing music daily and rehearse my dance almost every day. My hubby and I started jogging every evening which makes me tired enough to go sleep without any "What if"s. I read books  on my way to work so I don't have any free time to think about that "C". ,……

 I'm a 37-femal so my interests are different from yours but what can helps us I –I think-  is to find our interests and go for them. I'm still thinking about what has happened to me and what the future might hold but it's much less than earlier. By the way I do something else, "not"  to think or day dream about those "what if" questions, the moment that any bad thought comes to my mind, I say "Stop", even sometimes I say it loudly. It has really helped not to continue having negative thoughts. Now, after almost two months of working on my thoughts and interests I feel brave enough to plan for the next 5-6 months, I've come so far as I was so depressed and not even able to imagine next month or so in the early months after my diagnosis.

Wish you peace of mind and Sorry if my English isn't good :D

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Foroughsh, you can do better. It takes practice but you can program yourself to better thinking. It sets the stage for everything. How are you today? Not bad, you say? That is just wrong. Avoid ALL negative verbal statements. Make it a lifestyle change. Say you are great. Or awesome. You'll see the other person light up with good feelings. That comes right back at you. And Voila! There are 2 happy people. It's amazing how contagious it becomes. Just don't take my word for it. Many here have learned to do it.  Second, if you want to get back to normal, do normal things. Jog, go to the movies or dinner. Doing things you are most familiar with and have enjoyed, will reproduce the enthusiasm that made you enjoy them the first time. Most importantly, remember that every minute you waste worrying is not recoverable. It is gone forever. When you catch yourself depressed or worried, put a spin on it. It is not that your future is shortened, it is that you get opportunities to tell people you love them, investigate options and treatments, or complete projects. Maybe travel, or whatever. Do something productive. We all die sometime. But you aren't dead yet. So live every minute. You are not dieing of cancer. You are living with cancer. Big difference. Let me just add that if I didn't practice what I preach. I'd be dead by now. Especially after this past winter. Not many expected me to live through February.  Instead, I am golfing, playing my guitars, riding my motorcycle, camping, and more. I don't have problems doing things. I have challenges. I'll also admit that when my number comes up, I don't believe that I will be depressed. But I will be pissed. I've got plans and I persue them. Live forward my friend.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Always thinkng about cancer is like having a song stuck in your head and you can't get it out. Learn to change songs. I whistle or hum, "It's beginning to look a lot like Christmas, everywhere I go."  If that tune doesn't make you feel happy, find one that does. The fun part is whistling that tune around other people and watching and listening to them suddenly doing the same thing. I feel good and it cracks me up. It's all about generating positive thoughts. Good luck to you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Because if you wander around in June, whistling happy Christmas songs, somebody WILL kill you!

a_oaklee
Posts: 447
Joined: Nov 2013

Todd.  All I can really say is that you aren't alone, and are quite normal to have these feelings and thoughts.  Everyone here is a unique individual, and has their unique personality.  What's best for one, May not be what's best for you.  I think you are self-aware and very good at expressing yourself.  You also are thinking clearly, and are fully capable of getting help if you think you need it.  

Keep posting.  I, for one, truly appreciate your ability to express yourself, and your willingness to be open and honest and share with others.  Your posts always help me.  

Stage 4 is a tough place to be, but from reading posts here, it almost seems like stage 1 people don't have peace of mind either.   I remember reading a post, a number of years ago, where a very ill Stage 4 patient, said he was glad he lived all those years not knowing he had cancer.  He enjoyed all those years without worry or concern.  He actually found a way to look positively at being initially diagnosed with Mets to lungs, brain, and bones.  An amazing individual.  

 

annie

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

We dread the test only because we are afraid of what the results will be.  And, oh yeah, the test ain't so much fun, either.

And having had to tell family and friends more than once that the RCC was back, I guess you cry some and then get your stuff in order (again), and decide to get on with life.  There's no time to waste worrying about what might happen, or if the surgery doesn't succeed, or if the drugs make you sick.

All you want to do is survive!  People like Fox have more experience from the treatment end, since all I've had was "Palliative Care"-i.e. Major surgeries.

So pull up your big guy pants and get on with what you want to do.

Donna

APny's picture
APny
Posts: 1949
Joined: Mar 2014

“it almost seems like stage 1 people don't have peace of mind either”

No, we don’t. Or at least I don’t. I’m grateful that it was “only” stage 1 and I’m humbled by the courage and strength of people in stage 4, but I take nothing for granted and will never be smug, thinking I’m “cured.” Perhaps with time the anxiety will lessen but right now I’m still very concerned with every test, checkup, or ache and pain. It’s not lost on me that our beloved DJ was also stage 1 when initially diagnosed with a small 3 cm tumor and for 10 years was fine. Then wham! This is a horrible, sneaky disease and no matter how positive I want to be the dread still sneaks in. Especially at night when I wake up and can’t fall back to sleep.

Todd, I hope you continue to be NED! You’re in my thoughts every day. But your scanxity is 100 percent understandable.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Glad to report to you all that my scan was AOK. There was a new punctile spot on my lower left lung, but I have a number of those that haven't changed in 3 years, so I'm putting that in the category of "nothing worth noting".

No symptoms. Nothing on the scan.

It doesn't take away my cancer, but that's ok. I really enjoyed all the posts. I'm remembering Fox's "I'm living with cancer", and the advice to say positive things, be positive, and do the things that make me happy. Working on that. It's helping.

Thanks everyone.

Hugs,

Todd

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Whew.. Todd, glad to hear this good news !!

Fox=LUV your outlook, appreciate you every day.

Can't whistle, but now I am humming that Christmas song..

Cancer/illness has a way of making you notice, appreciate and LIVE LIFE~

Gentle hugs, Jan

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Great news, Todd!! Congratulations.

I was diagnosed as stage 1.  My 1 year scans are in mid-July.  Like apNY, I am anxious.  I will remain vigilant and a little nervous each time my scan appointment comes up.  And after my 3 years of scanning, I would like to say I will not worry, but folks do have recurrences 10, 15 or 20 years after their initial diagnosis.  Maybe I will not worry, but I will remain vigilant. 

Srashedb
Posts: 482
Joined: Dec 2013

Todd: 

great news! my husband has had those punctiles on his other kidney and was told the same thing "nothing to worry about ",

so, you can take a deep breath and follow the Fox Method 

Sarah

angec's picture
angec
Posts: 923
Joined: Mar 2012

Good news! Great to hear it! Now go out there and live!  XXOO :)

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Yes! Glad to hear it. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

So happy to hear about the good results, Todd. May they continue!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

But then you always knew it would be. You can deal with anything. You know this. You can deal with anything coz youve got no choice. None of us have. So bring on tomorrow! Its just the fear that haunts us even though it cant harm us.

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

Try to relax if i am correct you would be considered a local spread stage 4 not a distant stage 4 which i believe is a huge upside

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Great NED news! Keep them coming!

Big hugs

Jojo

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