My Turn For Scanxiety

SFBob
SFBob Member Posts: 33

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

«1

Comments

  • APny
    APny Member Posts: 1,995 Member
    Best of luck to you and

    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.

  • aamdsi
    aamdsi Member Posts: 284
    A glass of cheer to you!

    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
    SFBob Member Posts: 33
    APny said:

    Best of luck to you and

    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.

    Thanks--and You Too!

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

  • SFBob
    SFBob Member Posts: 33
    aamdsi said:

    A glass of cheer to you!

    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. 

     

    Congratulations on Your Results

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

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    SFBob said:

    Congratulations on Your Results

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

    {{{{  BOB  }}}}}
     
    Hugs to

    {{{{  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
    SFBob Member Posts: 33
    Jan4you said:

    {{{{  BOB  }}}}}
     
    Hugs to

    {{{{  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

    Beautiful Prayer

    Thanks--beautiful prayer.

    Good idea about that report!

    Bob

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    SFBob said:

    Beautiful Prayer

    Thanks--beautiful prayer.

    Good idea about that report!

    Bob

    It is always a stressful

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

    Hugs

    Jojo

  • Allochka
    Allochka Member Posts: 993 Member
    Jojo61 said:

    It is always a stressful

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

    Hugs

    Jojo

    Plenty of NEDs here lately,

    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!

  • Phredswife
    Phredswife Member Posts: 162
    Scanxiety always sux

    Praying for NED.

  • foroughsh
    foroughsh Member Posts: 779
    SFBob said:

    Beautiful Prayer

    Thanks--beautiful prayer.

    Good idea about that report!

    Bob

    Wishing you a NED report.

    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

     

  • Dembel
    Dembel Member Posts: 32
    Same here.....

    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
    SFBob Member Posts: 33
    Dembel said:

    Same here.....

    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

    May NED Visit Us Both

    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
    Jojo61 Member Posts: 1,309 Member
    I feel for both of you, Bob

    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
    APny Member Posts: 1,995 Member
    Jojo61 said:

    I feel for both of you, Bob

    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

    Also thinking of you both and

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

  • Dembel
    Dembel Member Posts: 32
    Hey Bob,
    Yes they did check

    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
    SFBob Member Posts: 33
    Jojo61 said:

    I feel for both of you, Bob

    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

    Thanks Jojo

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

    Bob

  • SFBob
    SFBob Member Posts: 33
    Dembel said:

    Hey Bob,
    Yes they did check

    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

    acetyl cysteine

    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
    Dembel Member Posts: 32
    NED

    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
    APny Member Posts: 1,995 Member
    Dembel said:

    NED

    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?

    Great news Dembel! That

    Great news Dembel! That champagne was well deserved :)

  • Allochka
    Allochka Member Posts: 993 Member
    APny said:

    Great news Dembel! That

    Great news Dembel! That champagne was well deserved :)

    Excellent! NED trend is

    Excellent! NED trend is holding on! :-)