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My Turn For Scanxiety

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Hi Everyone,

I've been back a few times since my surgery in February (some of you here were really helpful with that), but life got busy--which I guess is good. But now it's two weeks from my first scan, and a well-known visitor to this group (starts with "Scan", ends with "xiety") has tracked me down and encouraged me to return.

My tumor was 4cm, confined to kidney (although in a location that forced a complete nephrectomy), grade 3. The surgery itself was amazing--6 weeks later I was back to my regular running routine (badly addicted runner) and the minimal scar (they used super-glue) was already fading. One thing that's been a minor pain has been having to switch blood pressure medications from the 10mg/day Lisinopril that had been working wonders for years. (Apparently there have been some recent questions about it adversely impacting kidney function.)

My last few days before the scan I'll be accompanying my wife to a conference in New Orleans. Hopefully plenty of distractions there (starting with the liquid ones :) ).

I gather from the experiences of many here (e.g. BellaBinksMom) that it's typical for a CT scan to generate a bunch of "inconclusive" results that require further follow-up--trying to prepare myself for that.

One thing that helps is seeing some of the awesome fighters in this group--and thus knowing that even in a worst case it would be the start of a fight, not the end of one. But especially with that grade 3, forgive me if I say I'm hoping it's not a fight I end up having to join.

Bob

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

Best of luck to you and hopefully you'll hear that magic word NED! I'm with you; totally admire those who bravely carry on the fight even in the face of daunting side-effects but being a grade 3, I too am hoping to sit out at the sidelines instead of joining in.

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

And the same to you! (Ready your latest post after I wrote this.)

aamdsi
Posts: 284
Joined: Apr 2014

Just got results back from my scan...4 days after I had it 8-(.  But NED so am NOT complaining!

So I am starting that trend for the week and am passing that baton off to you! (from one runner to another)

Have a great time in New Orleans.  I am sure there are planty of distractions there to keep your mind occupied. 

 

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Thanks--and congratulations! I guess good things are worth waiting for. :)

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

{{{{  BOB  }}}}}

 

Hugs to you and yours!

Do you know the Serenity prayer?

(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!

 

I'll be thinking of you and praying for you.

BTW, I always pick up my copy of the report from the place/hospital medial records department.

It is usually a a day or two after the test.

Let us know how you are doing.

Jan

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Thanks--beautiful prayer.

Good idea about that report!

Bob

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

It is always a stressful time. Wishing you a NED report! It seems to be a good trend these days!

Hugs

Jojo

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

Plenty of NEDs here lately, so you and Apny will continue in the same way! Keep us posted. It is stressful, but what a joy and relief when you get your good results!

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

Wishing you a NED report. It's normal to become anxious before every scan routine. But don't worry, you have a good patholkgy report and wonderful chance to never hear the bad news fron you doc.

Forough

 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Praying for NED.

Dembel
Posts: 32
Joined: Jul 2015

Hey Bob,

Same here for my partner......surgery end of June, unfortunately tumor 9cm and not confined to the kidney (fat tissue and blood vessels "contaminated", grade 2, and back at work after 6 weeks, back to normal in fact, badly addicted biker.

And now next Wednesday 7 October......the first full contrast scan! HELP!! SCANXIETY! I don't sleep well anymore, I think he doesn't sleep well but he hides his worry, he acts as if it's just a little check-up at the doctor's office. But deep inside he is worried sick, and so am I.
That's the terrible thing, when they found the tumor.....which was big, almost same size as the kidney itself, he was OK until a few hours before going into the ER. He didn't feel anything at all.....and that worries us now, he feels great, as if nothing happened..... but what is happening inside.

But enough of that, this was just to give you the feeling that you are not alone Wink.

Maybe there is nothing! And then all this worrying wasn't worth it! Let's go for champagne soon, celebrating NED! That must be the starting thought!
When is your scan? And will you know the results the same day? My partner has the scan in the morning on 7 October and he thinks he will have the results the same day, I hope so because I took half a day of work to hear what the doctor has to say. I have a medical background (which does NOT help on the worrying side) and really want to hear with my own ears what the situation is.

But I really will put a bottle of champagne in the fridge the night before......

All the best!

Dem

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Hi Dem,

Oh, I'm sorry--very sudden and frightening. I can imagine what those hours in the ER must have been like.

My scan is supposed to be Monday, Oct 12--but there's a possible wrinkle. My Internist (I think after conferring with a renal specialist) switched my BP med (from Lisinopril to Amlodipine) a couple of months back to see if it would improve the functioning of my remaining kidney. This coming Monday, Oct 5, I have a kidney function test to (a) see whether the new BP med made a difference, and (b) provide the reading they need for the scan so they know how much (if any) contrast they can give me.

The catch is that if by chance the change has resulted in a DECREASE in renal function, I might have to go back on the old BP med and postpone the scan in the hopes that renal function will recover after which the scan can be done with more contrast. If that happens, I guess it will be the right medical decision, but--ugh.

You mentioned your partner is getting a full contrast scan. I guess that means they evaluated his kidney function and decided it was OK for that?

As far as hiding the worry goes--I know us men are supposed to be good at that. I guess I keep up a decent front when I'm out in public, but when I'm home I think I've done a lot of dumping on my poor wife.

Here's hoping to NED-squared for you guys on Oct 7, and then the same for me Oct 12--or--whenever.

Bob

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

I feel for both of you, Bob and Dembel. Hearing it from both sides - the caregiver and the patient. The anxiety is very fresh for you both.

Bob - don't feel badly for "dumping" on your wife. I think she will feel better knowing how you feel rather than guessing. She will feel that at least she is supporting you. This extra wrinkle that you have with your blood pressure medicine is not fun - you just want to get the scan done and over!

And Dembel, this first scan is a really difficult one to go through. As the scans come and go and you get more NED reports, it will get a little easier. You are being a great support to your husband. Try and remember that worrying doesn't change the outcome. Try not to put yourself through so much worry - not easy, I know!!

Thinking of you both and praying for NED results for all!

Hugs

Jojo

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

Also thinking of you both and wishing for you to hear the magic word. All the best! The scanxiety and waiting is horrible.

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

You've been so wonderfully supportive to so many people here, myself included. I very much appreciate it.

Bob

Dembel
Posts: 32
Joined: Jul 2015

Hey Bob,

Yes they did check the function of the remaining kidney and that was fine. Two days before the contrast scan he needs to take some medication to protect the kidney though, the prescription says it is 'acetyl cysteine', which is something I take when I have cold.....

Just this evening, sitting in front of the television, he suddenly said "I'm very curious about Wednesday".....that's the first time he does show some worry, but of course the worry was there all the time....

I hope your scan will happen, as I do feel/hope it will give some relief......for both of us.

All the best and keep us posted

Dem

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Just read the Wikipedia about acetyl cysteine--really interesting. I might ask my doc about it.

My internist asked me to ask my urologist how important contrast would be for this scan, and he responded "very important - I support anything your internist is doing to improve your kidney functioning so they can use as much contrast as possible". In a best case I'll find out on Monday that the new BP med has improved my kidney function and this is no big deal. Otherwise I'll try and get the internist, urologist, and radiologist to all communicate while I'm away on vacation--might be easier to try and end the war in Syria. :)

Good luck with your husband's scan on Wednesday--and with mine--hopefully--a few days later!

Bob

Dembel
Posts: 32
Joined: Jul 2015

Three months post-radical nephrectomy for a stage 3 grade 2 tumor, the scan was perfect! Nothing to be seen on lungs or anywhere else, so we had champagne. The acetylcysteine hopefully did its job to protect the remaining kidney, and the next scan is in 6 months from now. So we are kind-off relaxed for a while......we will see how long we can keep the relaxed feeling!

Bob, any news from your side?

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

Great news Dembel! That champagne was well deserved :)

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

Excellent! NED trend is holding on! :-)

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Fantastic news! So happy to hear.

My scan isn't until Monday. My urologist confirmed I will be getting contrast. Apparently there's some disagreement at this point as to how effective acetylcysteine is; in my case they've asked me to just drink lots of water the day before, day of, and day after. This article led me to a contrast risk calculator; if it's to be believed, my risk from contrast with one well-functioning kidney and no other risk factors is only marginally greater than if I had two.

I'll be hoping to celebrate with you (virtually) once I get the news from Monday's scan!

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

SFBob, I think Uncle Ned is on his way to your house. So make sure you have something on hand to celebrate with him! Will be thinking of you Monday.

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

APny, you were right! I had my CT Scan this morning. Three hours later my (awesome) urologist took time out from his vacation day to let me know it was clear! My first reaction was to break out in tears. I guess it was the first moment where I didn't feel like I needed to keep the fear under control.

After thanking my urologist I thanked NED and sent him on his way, since there are so many others who need his company.

Thanks again to everyone here for the incredible support, and if you're waiting for a visit from NED, may you find him at your door soon.

Bob

Texasgranny38's picture
Texasgranny38
Posts: 24
Joined: Jul 2015

So happy for your good news, Bob.  My first 6-month follow-up is coming up in 3 weeks, and am starting to feel a little anxiety.

Hanging in there.

TexGran

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

Fantastic news! And you have a wonderful, caring doctor!

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

Yay, thrilled for you! Go celebrate! I agree; your doctor is a gem.  

SFBob's picture
SFBob
Posts: 33
Joined: Mar 2015

Yup, for me, 3 weeks was about when the anxiety about the scan became worth talking about. May your 3 weeks be as anxiety-free as possible, and may they end with a nice visit from Uncle NED.

Bob

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

So happy for your wonderful news!

 

mrou50
Posts: 389
Joined: Mar 2013

Great report shed all the tears you want that is good news.  Keep up the good reports and stat strong.

 

Mark

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

Well done Bob

Dembel
Posts: 32
Joined: Jul 2015

FANTASTIC!!

Bob, I hope you had lots of champagne :-)

GREAT news, I'm so happy for you!

I feel it here, we are so much more relaxed and happy since the results, it's amazing!!

:-)

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

So happy to hear your news, Bob!! And also for your husband, Dembel! Ned certainly is getting around - happy to hear that he is being so social!

Great news. So happy for you both!!

Cheers!

Hugs

Jojo

 

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