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"Good Luck?" - Scanxiety - Furious Pete

jason.2835
Posts: 337
Joined: Nov 2014

Hey, all,

Sorry in advance for the long post, but I have a couple things to get off my chest.

So I need a reality check.  Had my one year scans today; they consisted of renal ultrasound, chest x-ray and basic metabolic panel blood work.

I am sure you will agree that the most nerve wracking part of the process is the ultrasound/MRI/CT when you're laying there and the technicians can see what is going on inside your body and you can't.  You think to yourself, "why are they lingering over this area?"  I could not, for the life of me, stop my brain from going to dark places.  She seemed to scan my full bladder for a while, but that could have been because I had drank a 50oz bottle of water and had to pee, so every second felt like minutes.  Anyway, the entire US lasted about 15 minutes or so.  The tech was young; probably not older than late-20s.

After the procedure, this was the exchange:

Her: So, obviously, I can't go over results, but your doctor should have them within a day or two.  Did you have any questions other than results?

Me: (laughing) The results.  (HAHA)  No, I'm not scheduled to see him until Sept 18 anyway.

Her: Oh, ok, then there shouldn't be any problem... Anyway, GOOD LUCK to you...

Good luck?  I don't like the use of "Good luck" after a ultrasound procedure.  It just sounds too much like "good luck... you're gonna need it."

Anyway, methinks I am going crazy.  2 things have happened recently that gave me pause.  The first was on this board when someone had their RCC return after 20 years.  That shook me a bit, because I've always been afraid that the longer I live, the more chance I have of it coming back (but I guess that's ANYONE, duh).  

The second is a YouTuber named Furious Pete that I follow just announced a few days ago that his testicular cancer has spread into the lymph nodes and that he will be undergoing radiation treatment.  He is a not-yet-30, extremely fit bodybuilder and posted an extremely emotional video to his channel about his struggles.  It was just... really bad timing.  He announced his first bout with cancer only a month or so after I did, so his timing on scans is very close mine.  It was another major shock to the system.   

I know that my doctor quoted me a 98% chance of non-recurrence.  I know that my tumor was small and was confined to the kidney.  But will this "scanxiety" get any easier as the years go on?  I have heard that 3 years is a benchmark in many cancer circles as to lowering the chance of recurrence even further... but I actually see it getting HARDER once it goes to the "once a year" scans... You'll have an entire year to put it out of your mind and then it will come back, like an out-of-control train.  I don't know.  

I have a son due in November, I want to enjoy this time of life and be there 100% for my wife (who can be a bit of a worrier at times, but has been insanely strong through all this) without blubbering about my fears.  I suppose I'll feel a lot better after I get a clean bill of health in a month or so.

Thanks for listening,

- Jay 

 

jason.2835
Posts: 337
Joined: Nov 2014

If anyone was interested in watching Pete's video, here's a link:

https://www.youtube.com/watch?v=-Hwo5QSf_xs

- Jay

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

and you can vent all you want.  That's what this board is for.

For what it's worth, my last US indicated the reader could not determine the condition of the bowel because of the fecal material obstructing the view....in other words, I was full of sh--.

Hope the sonographer didn't push too hard on the full bladder.

I usually watch the US screen, at least until I have to turn on my left side to allow checking the left kidney.  And because the left lobe of liver was also removed, they usually do the US that high in the abdomen.  Have to push on everything.  Quite frankly, whoever does the test usually has a hard time because many of the recognizable organs are missing....uterus, ovaries, appendix, right kidney, gall bladder, and left lobe of liver.  Call me the gutless wonder.

The Good Luck comment is just something they say; I wouldn't take it personally.  What should they say?  "Thanks for the BA; or Get some sun."  It does seem like forever while the test is being done, but watching does help you understand that they take 4 marker points for the actual "freeze frame".  and sometimes it's in B/W and then it can be enhanced to red/blue to show arteries and veins.

And I do understand, passionately, your desire to be around.  If you cultivate a relationship with the Oncology nurse, she will usually allow you to call about a week after the test and at least give you a summary.  That can releive a bit of stress for the next few weeks.

This is not a "flippant" post and I'm not saying don't worry.  I've done my share.  But humor and hope have gotten me this far and I want to go further.

Enjoy today, and regards to your wife.

Hugs,

Donna

 

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Hi Jason,

I know too well how hard the scanxiety and waiting could be. My partner had his ultrasound follow up yesterday (all clear), has to have chest x-ray yet, so I haven't posted any NEDs untill x-ray confirms it.

first of all, you are not Furious Pete. The fact that his cancer has returned doesn't mean yours will. This is not an evil omen of any kind.

Second, the member who had her cancer returned had Stage 3. You had Stage 1, it's a big difference, you know...

My partner had almost same pathology as you, is same age with you and we also just had our first baby. So somehow I feel for your situation very much and I'm rooting for you! I've already quoted here what urologist said to us during first visit, when I was still pregnant and very worried. He said - don't worry, your daughter will have a healthy farther for maaaaaany years to come.

I belived him. Same can be said to you. Your son WILL have a farther for a long-long time!

I'm sure your ultrasound and other tests are OK. It is just scanxiety talking, especially when you have a long wait ahead. In our country docs-radiologists are performing ultrasounds, not techs, so results are given right away. Lucky for us.

hold on, you'll be ok, take Furious Pete's and other cases as reasonable precaution to keep on scanning, but don't think their stories signal the same fate to you!

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

And let's say cancer returns after 20 years for my partner or you - well, you both had lived 20 wonderful years more, got much older, kids have grown up. 20 years is a long stretch of time to worry now about what happens after all these years. Let's start  worryingbabout about possible reccurence at 20 years mark in 19 years, OK? :-)

jason.2835
Posts: 337
Joined: Nov 2014

Allochka,

I KNOW all these things... 99.99% of my issues are mental.  It sounds trite to say that "cancer wasn't on the menu of life," but I guess when you can get so surprised at my age with an initial diagnosis, it can give you some pause.  I appreciate the kind words.  

I've never really been one to imprint others' stories onto my own... but I guess the last month or so has been a lot at once.  It has made me think.  But I've already started to come down from it all.

To be honest, reading my pathology report makes me feel better.  It was extremely positive in the margins, the size, the grade, etc... It actually calms me down to read that stuff every so often.

- Jay

jason.2835
Posts: 337
Joined: Nov 2014

Donna Lee,

You're right... what WOULD I expect them to say haha?  "So long, and thanks for all the fish?"  (Any Douglas Adams fans here?)  I really shouldn't read into it... it was just the way the conversation went about the results... As if I should be looking for them ASAP rather than just waiting for them... I need to stop haha.  

I was in a bad position to see the US screen unless I was on my right side... the side that there is no kidney.  It seemed like everything looked good in that area.  A whole lot of nothing.  That was reassuring.  

My wife actually recommended that I call them later in the week to see if anyone would give me a heads up on the results or, even, to get in earlier to see the doctor.  Who knows; I'll do what I can.  Thanks for the reassurance.  

- Jay

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

Well, Jay, you certainly aren't alone here with scanxiety. And with the news from your youtube friend, that can be a little intimidating. Plus we have just lost two of our dear friends from this site. It hits home!!

I just went for an ultrasound this week for other issues. I did all the things I am not supposed to do.... I GOOGLED IT! And according to google I have ovarian cancer. LOL. See how dangerous it can be? However I haven't been feeling well, have pain in my menopausal ovaries and feel full all the time. Monday I went for an abdominal ultrasound. The technician worked on me a good half hour. Then informed me that she would be doing an internal ultrasound. ALARM BELLS!! That was not on the requisition. I, too, tried to watch out of the corner of my eye what was on that screen. I may as well have been looking at a lava lamp, for all that I could see. When she did the internal US she pulled the screen very close to her. When she was done, she left the room, while I dressed. She was standing outside the door when I left - and she said TAKE CARE. So I know EXACTLY what you felt like. Super analyzing any comment, expression, etc.

So I, too, am anxiously awaiting to see if Dr. Google is right. I am sure it is something minor, but it did need to be looked at.

Hoping you get good news, hon. September 18th is a heck of a long time to wait. As Donna suggested, maybe call the nurse in a week or so. (love the "gutless wonder" comment, Donna!)

Hugs from your Scanxiety-Hypochondriac-CSN-friend,

Jojo

jason.2835
Posts: 337
Joined: Nov 2014

Jojo,

"TAAAAAKE CARRRRREEEEEE..." It almost feels as if it's slow motion, doesn't it?  And your US experience is textbook to what I'm talking about.  When I told my wife, she said, most sensibly, "I'd want them to be thorough, wouldn't you?"  LOL.  I guess that makes sense.  And something to hang your hat on as well.  They were probably just being thorough in your case.  

What's funny is that I went into this thinking to myself, "no matter what happens, don't read anything into it.  You are a Stage 1 patient.  Think positively."  But it's the times that I let the dark thoughts creep in that I cause a vicious cycle, because then I get down on myself for thinking the thoughts in the first place.  If that makes any sense.  I just know that there are many more who don't have as good as a prognosis as I did and I don't feel like I have the right to think that way.  I know I'm wrong, but still.

- Jay 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Well it sure seems WE can appreciate your mental state and how these tests and technicians can make us read more into a situation.
Yes it is wise to be aware and prepared, but not to give up much needed energy in worrying.

So ask yourself, Jay, what do you gain by this anxiety? What can you do about it?

For one, I always get my own copy of my radiology reports or other tests results ahead of my appointment.
That way I have a thorough medical record file in case I see another doctor who would not
have access to all my records.

I come prepared with my own copy to ask pertinent questions of my health care provider or clarify terms/results I do not know about.
The other thing I do is use my FAITH to alleviate any anxiety best I can.

Also, I use the "Serenity prayer" ...know it?
(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.

The other way, come on here and ask those who have been through all this.

I choose to live my life and not worry about the "what ifs"... Trust me I used to be a "worry wart" as a child.
Yes we've been giving a shocking diagnosis, but there are good doctors and treatments (surgery) to help us.

Lastly, I do my "gratefuls".. for all I have, all my blessings.
I concentrate on the good in my life and not the "what ifs"
Others have it worse than I, is my focus in life. So I volunteer to help others.
You'd be surprised at how helping others
gives back more than we could believe.

Sending you a caring hug, hoping for a collective sigh of relief...
Jan

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

Tongue and cheek response coming . . . .

So you have a female in her 20's rubbing your lower abdomen for 15 minutes or so and you think about furious Pete?   Even with the warm gel?  C'mon, man, enjoy the ride!  I remember asking my technician (who was in her 50's or 60's) if I was going to have a boy or girl, and she did not laugh at my bad joke.  I cried when she rebuffed my lame attempt at humor.

Now for some serious comments and advice.  Septmber 18 is an awfully long time to wait for your results.  You should ask your doctor for an earlier appointment, or schedule your appointment for scans and results closer together if this is possible.  I have said before that the worst 30 minutes is the time spent in the waiting room of the doctor's office to go over your results.  I was able to peek at my results which were posted online, and I had some comfort--except for a couple of cryptic question marks ont he radiogist's report.

Statistics are on your side, my man.  Reading and thinking about other people's problems and recurrences is fine, but don't let other people's problems become your problems.  I think the 20 year recurrence you refer to is a person who was stage 3--I think you were stage 1.  I think Foxy has had some sound advice about worrying.  It is unhealthy.  Push the negative thoughts out of your head.  You are at one of the most special and beautiful times in life waiting for for your first son to be born.  Vigilance is good, but there is a fine line between being overvigilant and paranoid. 

 

Evil thoughts creep into my head once in a while, and I quickly do something to push them out.  After all, I am Positive Mental Attitude--I someimes which I had not chosen this screen name---but it is ME.  Last year sucked in more than my cancer diagnosis.  This year started off great, but I just learned that about 50% of my business is going to disappear at the end of this year.  I was upset for about 10 minutes.  I shrugged it off and said F- it, we will make it up.  Life is too short for worry.  Got to keep moving forward in a positive direction and not look back.

Sorry if this sounds like a rant or preachy.  I hope some of it is helpful--or at least you laughed at the first part.    

jason.2835
Posts: 337
Joined: Nov 2014

PMA,

I DID think that, for a second... But then I had to pee so ad that it precluded my ability to enjoy it!! I hear you, though. I have been thinking that a month is a long time to wait... What happened was that I'd made the appointments to do the scans and then the Doctor's office got all back up and it got pushed to the end of the month. Originally it was supposed to be much earlier in September. But I'll try to snag a copy of the report at least, or get an earlier appointment maybe

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

Compassionate care? .   . . . . .

Overall, I am thrilled wih my team, but I have to say that where they could use improvement (and your team could too) is understanding that making us wait more than one week for results is not nice.  Yeah, they are busy, and they are dealing with patients with much more dire situations than ours, but they should know that having us wait so long for results it torture.  Heck, wouldn't it save them time if the results were 100% positive that the nurse or admin could just call us and tell us "you are all clear!" right away?  They could give us the option still going to our follow up appointment to see the doctor.  As indicated, I sort of knew my results were OK in July before I went to see the doctor.  I got a bonus in a prostate exam because the US showed a slightly enlarged prostate--so good things come to those who wait? Cool

By the way, I like your new avatar a lot.  Great picture-- you guys look so happy.

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Scanaxiety is part of the condition.  We all get it to one degree or another, and of course every extra aches, pains, coughs etc...make us more nervous. More than two weeks is a ridiculous wait, I agree with many above about consulting with the nurse is worth a try.  In regards to what Jan4you said, do get copies of all your reports and CD's of scans.  My MRI tech suggested that I get a thumb drive for future scans the files sizes are get quite large. Anyway press on,  and good luck.  Jack

APny's picture
APny
Posts: 1947
Joined: Mar 2014

100 percent understand the anxiety and the reading into things the technicians say. After one of my US scans the technician asked "Have you been feeling well? Everything ok?" Scared the hell out of me. Why did she ask? Did she see something wrong during the scan? Turns out it was just her way of trying to be nice. My scan was fine. I agree with PM; September 18 is way too long to wait with anxiety. I'd call in a few days.

jason.2835
Posts: 337
Joined: Nov 2014

APny,

I think we need a new thread for "Dumb things our scan techs say."

- Jay

APny's picture
APny
Posts: 1947
Joined: Mar 2014

I'm sure we could all come up with some good examples. I get scanned by Sloan Kettering and I have to say the techs at the Long Island branch are all fantastic. The ones in the city are a mix of good and not so good. Now I schedule all my scans on the island for that reason.

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

Jason,

What a beautiful photo, LIKE

I think it's mind play, whenever it got close to my checkups , i paid attention to all news related to cancer, and even if I hear someone had died of cancer at age of 90 i thought i would die within few months!!!!! I would actualy listened to bad news, everytime i went for ultrasound or ct, i tried to understand what was going on by staring at the technitians face or reactions, and geuss what, i always interpreted wrongly. I always thought they had found something but didn't want to tell me!bur saw the report it has been always good since surgery. But sincefew months ago i've worked hard to stay positive, if. We've heard bad news once it doesn't mean we have to hear it again. If it has metastazied after 20 years for stage three it means you have almost 100% chance it never comes back.

I had appointment for my first year checkup on sunday but they called and changed the date  so I'm also in the waiting period and fully understand how it feels, i'm sure you'll have great news for our board.

Forough

 

 

 

 

 

 

Nn

 

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Speaking about dumb things ultrasound docs say... I had my first breast ultrasound a year ago. By the end of the exam docs's face was rather sad, and he signed... I was troubled and asked "why"? And he replied very sadly - "you know, normal breasts, again  nothing for me to report..." :-) I swear I've got grey hair seeing his face :-)

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

If it were me, I might have punched him in the face. 

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