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Heyker
Posts: 36
Joined: Jun 2016

Hi all!

I've scheduled my first 3 month post op for the end of this month. I'm already in knots. How do you handle the emotional side of having checkups every 3 months? I'm doing OK physically but emotionally I'm afraid to plan anything long term. 

Kerry

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I try to stay optimistic but it's difficult. Honestly, I don't think my life will ever be the same as it was B.C. (before cancer) when I didn't interpret every little thing as OMG it must be mets. I go every six months, not three, and my next check up is next month, and I do stress over it already, no matter how futile that is. I know that at stage 1 I'm so much more fortunate than others with more advanced stages but I take nothing for granted. This is a sneaky disease and can come back at anytime, to anyone, regardless of stage or grade. I'm hoping once I'm past the "magic 3 years" my anxiety will lessen. Wishing you all the very best with your check up and just know you're not alone in being anxious.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Kerry, I have monthly checkups and 4-6 month scans, and frankly, I look forward to them.  It helps, I guess, that I have doctors that I really enjoy seeing. And my wife accompanies me on every visit, which, I think, really helps lighten the load. 

One thing I've learned is that I've never successfully self-diagnosed any of my symptoms. It's kind of amusing: if I feel bad, my labs are "great!"; if I feel especially good, then something's wrong.  So I just relax and go with the flow. When I'm in the "scanner" I just pretend I'm in a spaceship (childhood fantasy).

Relax, with a good perspective, there's more good news than bad.  Go ahead and make your long term plans.

Kangaroorex
Posts: 45
Joined: Jul 2016

To be honest I try and forget about the fact until its right on top of me.  I do my best to find things that keep me busy and occupy a lot of brain space, particularly in that time between when the scan is taken and when the result is given.  I used to be on a trial and I would get a scan and have the results that afternoon.  Now its 5 days between when i am scanned and when I get the report, by that point everyone that i have ever known has been talked to and every report I can do for work is up to date.  Then I get the results and return to a near normal life again.

Thats my coping mechanism.  It helps me through the rough spots

Roo

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

I went for yearly checkups after my nephrectomy. First year was fine, second year the CT scan showed something in a lymph node in my chest. That was distressing. I had not even seen an oncologist up to that point. Found a good oncologist, and scheduled a biopsy with a thorasic surgeon. The thorasic surgeon went in and took two samples for biopsy. Both were negative, but he said that it looked bad to him and that we should get it treated. Had another scan at 2 months after the first and it showed growth. Then went to a radiological oncologist and she scheduled radiation therapy over a 3 week period. Had the radiation, went to Barcelona with my wife and about three months later had another scan that showed significant reduction in the tumor. Started on Votrient about a month after that and have been on Votrient for about 18 months. I have had scans every three months since the radiation therapy the last one being just about three weeks ago. The tumor has continued to shrink and is stable. My oncologist and I decided to go for four months before the next scan. If there is no change will go to six months. 

I know that it is stressful having the scans so often, but it is better to know what is going on and be able to take the necessary actions to keep progressing in your treatment. The worst thing for me personnaly is not knowing what is going on with my condition. I would rather have all of the information that I can get so that I can deal with facts and not my imagination. 

I know that this whole experience is stressful for you. The only advice I can give is try to live for today and plan for the future based on what you know to be true, not what you fear may be true.

I wish you the best of luck and hope that your results are good.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

"... try to live for today and plan for the future based on what you know to be true, not what you fear may be true."

-- Nice!

Kangaroorex
Posts: 45
Joined: Jul 2016

I cant think of a better reason for knowing.  And the high when you do get good news is usually worth it! :)

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

My scans are coming up in October and I am on Votrient.  Praying for a good report. :D

louis99
Posts: 3
Joined: Sep 2016

Hi Rob,

What stage was your cancer  at time of Nephroctomy?  Thanks!

Louis

Rob57's picture
Rob57
Posts: 25
Joined: Aug 2016

I know that it sounds kind of weak, but I have no idea what stage my cancer was at the time of my nephrectomy. I know that the tumor was 5.5 cm x 3.5 cm. It was contained within the kidney and near the center of the kidney which was why my urologist recommended that we take the whole thing. I did not have any other problems until 2 years later after my annual CT scan. A lymph node in my chest showed a tumor. Had a thoracic surgeon do a biopsy and it showed it to be non-cancerous, but in consultation with him and my oncologist decided to treat it as cancer anyway. Had radiation and started Votrient and have been on it ever since. The mass in my chest has shrunk to about half the size that it was and has been stable for about a year now. Nothing new has shown up in the time that I first saw the mass in my chest which was more than 2 years ago. Again, not sure what stage I was at diagnosis or would be considered now. Sorry.

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

My cancer is somewhat under control.  While we fret over the quarterly scans, they have become less stressful.  At the start, everything is crazy.  As things settle in, confidence is gained such that you may even get to the point of expecting good scan results.  Give it time.  Worry is normal.  If you are blessed with a couple of fairly good reports, the anxiousness diminishes somewhat.  I hope that your worry level goes down over time.  I agree with the comments of the others which have preceeded mine. 

Best wishes.

Dutch

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

First it's 1 appt. Then another. A test here and there. Few hospitalizations. Radiation.Change of drugs and different side effects. Who has time to worry? 5 1/2 years of  looking forward to being here because of all the medical visits. One thing for sure is that you will be watched carefully. You will also become your own advocate. And lastly you will learn more about stuff you wished you didn't have to know. About yourself. And life goes on.

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

Is to try to stay in the now, sufficient to the day are the trials thereof etc. In reality I try to approach everything with equanimity. Good news or bad news its all the same, and I try not to let it effect me too much either way. As Fox says, who has time to worry, I would add who has time to hope. Life goes on.

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

That I dont sleep a WINK in the week before a scan. I also dream that my cancer is a very disruptive student in my class who wont shut up, sit down,do his work, let anyone else do any work, let me speak, or leave. And no one come to help. Sometimes he resembles an actual student sometimes a very big burger.

I have the worlds least subtle subconscious.

What was so special about Freud anyway?

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

We understand. My belief is what does worrying gain us? Not knowing is unpleasant to say the least. Do you know the words of the Serenity prayer/poem?

(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. Use your faith, no matter what they may be, in your doctors, in science, in your religious beliefs if you choose, your family and us. WE will walk along side you through out this journey, if you choose us.

Sending you calm and serenity so you can enJOY each and every day we are given.

Warmly, Jan

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Don't allow it take over your every thought.  Most likely it will be a visit from NED.  In the event something awful is found, it will have been found early and like your first experience with cancer, you will find a way to deal with it.

If you get too overwhelmed, try xanax.....helps me a ton during those times.  Also, I read an article that these feelings are not so unusual for cancer survivors, so you are not alone.  That helped me a lot to realize I am not alone in my thoughts.  I think as time goes by, it does get a bit easier too Kerry.  Keep us posted on your results.

Donna~

P.S.  Can you please enter your profile, it would be nice to see your history.  Thanx!

Heyker
Posts: 36
Joined: Jun 2016

I entered my profile. 

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

Makes everthing a lot easier

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I can't see it. We used to have a problem with updating profiles. I wonder if it's still happening. I went to your profile and it's blank.

Todd

mrou50
Posts: 389
Joined: Mar 2013

I try not to think about it, I just live my life day to day and enjoy each moment the check ups will take care of themselves one way or another no amount of worrying will change the outcome, so I guess just try to enjoy your life.

Mark

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Kerry,

I like Donna's (and others') comments on how you're "not alone." That's for sure!

On the plus side, having a scan every three months means you have a great reason not to say YES when the local animal rescue group asks you to please consider fostering 47 feral cats for six to nine months.  Also on the plus side, having a scan every three months is a great reason / excuse to plan something really nice for yourself (or for you and yours) that's going to happen the month or so after your scan, on your 6 month anniversaries, and on your annual anniversaries. 

Jerzy

Heyker
Posts: 36
Joined: Jun 2016

I've decided to go see a counselor since I have previous diagnosis of ptsd and anxiety. I don't want to be a mess every 3 months and want to learn early how to cope with this. I may never have anything else happen but I want to feel as normal as possible for me and my family. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

And maybe the wisdom you gain can be of use to the rest of us.  :-)

Best wishes to you,

Donna~

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

I do my best to take this one day at a time. It is all I can handle. Most of my stress comes from getting the IV for the tests. Strange, I know but I am a "hard stick". Every 3 months for me. Hey, Praying for good results for you.

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Wish you a good results with your check up! 

 

What helps my husband and me - we don't know too well in advance when the check up would take place. In our country we ourselves make an appointment with ultrasound doc, and usually our doc is avbl pretty soon (Works in expensive private clinic, majority of people prefer cheaper options, but my husband has good insurance). So we simply remember that once in six months we must have a check up. When approx 6 months pass, we are like "ooops, time for follow up!". So husband calls to make an appointment and usually gets a visit on a very next day or so. So we have only a day or two to worry. Not knowing in advance that day X is approaching helps me greatly.

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Heyker, smart seeing someone on how best to manage the anxiety. For me a low dose Xanax works wonders.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

This has been a problem for me too all along. I'm also on a 3 months CT/bloodwork schedule and with what I was told is a 2/3 chance of mets in the next couple of years, I still get very anxious at scan time. The other issue is I used to get scans in the morning and results in the afternoon. I can't do that anymore. Now there is a 1 week delay getting my results. Funny thing is I don't get anxious until I've had the scan and I'm waiting to see the doctor. Then I get really, really anxious.

It does get better with time.

I'd say do all the stuff they talk about doing to help reduce anxiety. Exercise. Get enough sleep. Meditate, pray. Do something you love to do and stay busy. I still turn to a little ativan when I can't sleep. I don't take it all the time (it's habit forming) and I take the smallest dose that will work (for me 0.5 mg usually works, but I'll take another if I have to).

It is hard to make long term plans. I agree. I'm still having a big problem with this. This diagnosis has really affected my attitude about living into old age. I used to think I was going to live a long time. I just assumed I would. The diagnosis seems to have increased my urgency to enjoy life while decreasing my peace of mind. This is a struggle. You're not alone for sure.

I say make the plans anyway. I've been trying to do that. Sometimes I'm successful.

There's hope.

Wishing you the best.

Todd

donna_lee's picture
donna_lee
Posts: 966
Joined: Feb 2009

It isn't easy in the beginning.  It does get easier, more relaxed, and more like a routine to check out the stuff inside---good or bad.  Read my most recend post to find out what 10 years can do to you.  I won't say I'm blase' about the tests, but they do

Stay busy, focus on a reward, get involved with life, play with a pet or a child or a grandchild.  Clean out a drawer, a closet, your workbench  It won't change the world, but it will keep you busy and focussed.

Best Wishes and Good luck  on the test,

donna_lee

Heyker
Posts: 36
Joined: Jun 2016

Thank you for all the comments. Yesterday was my birthday and I can remember thinking when I first found out would I make it? I'm off tomorrow to the beach by myself until friday. Both therapist and doc feel it's a good thing to go and recharge. It's been a hellish year and not just with my cancer. I'm so ready for these few days. I'll be back.

 

Kerry 

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marosa
Posts: 333
Joined: Feb 2015

Wishing you all the best this year and many more to come!  You mention you filledi in your profile but it's empty!  This is a bit complicated but it's so helpfull, please try again!   Some of us mention this from time to time, please fill in your profiles, its difficult to keep up with you if we don't have that info to go back to. It's also of so much help forl us all.  We look how others with similar cases are doing.  Its helps in so many ways!  Thank you!

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