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Scanxiety

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I'm feeling a little guilty that I haven't popped in for awhile and now it's scan time so my cancer is really on my mind (even though I don't want it to be). I had my scans on Wednesday.

Funny. They've changed the procedure on the CT scans. They used to do 3 scans: one for chest, one for abdomen, and one for pelvis. It meant holding my breath three times. This time they did all three in one pass. At first I panicked because the last time I only held my breath once, the doctor's order was messed up and they'd forgotten my other scans so I ended up having to run up to the doctor's office and get them to correct the order. I'm so used to the procedure that I realized something was wrong right away. I panicked because the drive to/from the cancer center is a good 1-2 hours each way and I'd already taken off work a day and was worried I was going to have to come back another day. So when I only held my breath once, I thought, Oh no! Not again. But then when I asked, they said that they're trying this to reduce radiation exposure. There was some overlap before and that ended up with extra radiation. I'm glad for that!

The other big news (haha) was that I was offered the contrast for the first time in 4 years (since my nephrectomy). The cutoff is creatinine of 1.5. I had 1.55 this time. I said, no thanks. My kidney doctor has a protocol for them to give me the contrast but radiology and my oncologist aren't interested in her protocol. That's a bit annoying. I think she's a great doctor and I really like her. I've tried to share what she thinks with my oncologist but he's never been very interested in what she thinks.

My anxiety is still pretty high this time. I had a lymph node slightly enlarged (a mediastinal) on the last scan so I'm nervous to find out if it's enlarged again. If so, I may be up for a biopsy, which, I'm not sure how easy that is to do. The lymph node is in a place very hard to reach (near my spine among my heart/lungs). My big worry is progression and what that would mean at this point. They said if it progressed within a year they wouldn't do surgery again. However, it's been well over 1 1/2 years so I'm guessing if that's the only tumor they might remove it or zap it. I'm not too excited about the prospect of taking any of their drugs.

The only health issue I'm having at the moment is an issue with my hands. They swell for no apparent reason and are hard to close. I've had this since my nephrectomy. It gets better and worse. Right now it's more frequent and more bothersome. The doctors have no idea what it is. It causes me a great deal of anxiety because I wonder if it's related to a tumor somewhere. It might be as simple as my age and/or weight. Still struggling with weight. I've put on more. Frustrated about that too.

I'm glad to see familiar faces. I'm going to try and catch up on reading up on the goings on with the new people and the old (no insult intended) people.

I get my results this next Wednesday. I'll post when I know.

Wishing you all well,

Todd

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

Well, good luck with your results

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Sweet Todd, it is so good to hear from you. I can appreciate what you are going through, so know i am sending you healing vibes and serenity~

If it were me and my hands would swell up as you described, I am sure a MD would order a diuretic. However I would see my Chiropractor who knows how to "read' the body and know what is trapped, nerves, vertebrae etc and if it is, KNOWS how to untrap such impediments.

Good luck, I am on your side hon!

Hugs, Jan

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

It's really odd. It's not generalized swelling. It seems to be in the connective tissue/joints and it comes and goes. Sometimes it's so bad it's even in my wrists and it's painful when I put pressure on them. It doesn't seem to be generalized edema.

Anyways, thanks and so glad to "see" you.

Hugs,

Todd

Jan4you's picture
Jan4you
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Is it painful? Maybe its gout related? What happens if you hold your hand up for awhile?

Feel better soon Todd!

Jan

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Holding my hands up doesn't help. It's in between the joints. Perhaps it is gout. But I thought gout is not usually widespread and symmetric? I'm seeing a rheumatologist on Friday. Maybe they can get to the bottom of it. My family care doctor did a test a couple of years ago, but it was inconclusive for gout. However, it's worse now so maybe they can tell now.

That's the beauty of cancer. I actually hope it's gout. Lol. :) I just want to know so I can put it to rest. Unknown symptoms make me the most nervous. That's because of my history. I had an episode of severe hematuria a year before my diagnosis and a PA didn't really follow through with looking into it. I later had another doctor tell me that I should've had a CT scan then. Severe bleeding with no UTI and no other symptoms is serious, so this other doc said, and should be investigated until a cause is found.

Now when doctor's shrug, it makes me nervous. They're only human, though. After all. I think the getting used to the unknown comes with this disease. It's not up to me, after all. Some things are just out of my control. Many things. Most things even. :)

Todd

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

I've missed you!!  Praying for good results on your scan.  Not sure what to make of your hands swelling, but then I'm no doctor, so I lack the wisdom. 

Can't wait to hear about your results and I hope the anxiety doesn't get the best of you.

Donna~

todd121's picture
todd121
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Joined: Dec 2012

Appreciate the response Donna. I'll post when I know. One of the things with this diagnosis, I find when I have a visit like this looming over my head I start practicing my response if it's negative and start to think out the possibilities of what will happen. I'm trying not to do that. I know it's not helpful. Anyways, sometimes it just happens. I put an end to it as soon as I'm aware what I'm doing. I do believe that our thinking affects our reality.

Take care.

Todd

daisybud's picture
daisybud
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Sending you good Karma! 

Kim

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Good to see you. How are you healing up?

Todd

daisybud's picture
daisybud
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I'm healing up good. Thanks for asking :)

Kim

 

Allochka's picture
Allochka
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Joined: Nov 2014

Fingers crossed for good results!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I'm hoping for good news for you. The scanxiety truly sucks. I think the issue  with your hand may be water retention. Or it could be mild arthritis. Seeing the rheumatologist is a good thing. Hopefully it's something that can be easily treated. Wishing you all the very best. Hugs xx

stub1969's picture
stub1969
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Joined: Jul 2016

I'm only about a month out of my surgery and I'm already thinking about my first set of scans.  I try not to let it consume me, but it is always there.  I'm not sure who posted the analogy of thinking about cancer is like a bad song that is stuck in your head, but it is so true.  Todd, I do hope your scans go well on Wednesday with good results AND you get some answers to your swelling issue.  You'll be in my prayers.

Stub

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

As Foostomper said, that was Fox I'm pretty sure.

I sing in my church choir. Often times the anthem from the previous Sunday is stuck in my head all week. Even songs I like bug me when they stick around like that!

There's good news, though. I can tell you from experience that at least I don't wake up thinking about my cancer anymore. I did for the first several months/couple of years. It was the very first thought when I'd wake up. Even in the middle of the night. I'd wake up, and the first thought would be "Damn. I've got cancer. This really, really sucks." Might even be a "poor me" in there somewhere.

I don't wake up with that anymore. I haven't in a couple of years. So, if you're new and you have this, I'm pretty sure it'll ease up.

Best wishes,

Todd

Footstomper's picture
Footstomper
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I believe that is a Fox original, and very accurate it is too

Jan4you's picture
Jan4you
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Sending you healing, calming vibes my dear Todd! Why? Just cuz!

Here for you!

Hugs, Jan

foxhd's picture
foxhd
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been a Frank and Nancy Sinatra song. Hey, And as I type, I've forgotten it! Holy cow! The cure is using a keyboard. Damn, I hated that tune. glad it's out of my head. Sometimes I choose diferent song to concentrate on but it never remains. My wife has been whistling a Tom Petty song for a month. Before that we were stuck on Janis Ian and her song 17. Great tune. I liked singing it in my head for a couple months. She was awesome.

Footstomper's picture
Footstomper
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Its got to be Boots or Jackson

hardo718's picture
hardo718
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as an "ear worm"....when you can't get a song out of your head.  Gross huh?  lol 

They also say replace it with the Happy Birthday song and it'll disappear, but then who wants to hear that?....other than a kid that is.  haha

Donna~

Allochka's picture
Allochka
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Todd, in my part of the world Wednesday is already over. Have you got your results ? Or maybe Wednesday just starting for you...

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

My oncologist came in almost 1 hour late. Apologized very much for the wait. Then said "Everything looks great. See you in 3 months." I asked about that one lymph node if it hadn't changed. He said no. I was thrilled.

Left the office elated. Called everybody. They were happy. Had a celebration dinner with my son.

Then this morning I took a closer look at the detailed parts of the CT scan report. It reported that that lymph node was now 11x10mm. (Last scan was 11x8). Damn. The damn thing grew again. Previous scan was 9x6 I think.

So I texted my uncle this morning (the retired oncologist). He said to ask my doctor. Emailed my doctor and told him I'm concerned that it's continuing to grow. He said it's small still and that's a small change, but if I wanted he'd refer me to a pulmonologist. So now I'm off to the pulmonologist.

I asked my uncle if I'm being too picky. He told me to go ahead and see the pulmonologist. He said they are the experts at evaluating mediastinal lymphadenopathy. That's a mouthful, eh?

It's probably nothing. But if it is, I want the damn thing out. Unfortunately, it's in a very hard to reach location. I'm still not clear that I understand mediastinal and pretracheal....

Of course it's good that it's just one little spot if that's what it is. Grateful for what is today.

The thing that's hard is trying to decide who to tell what. My boyfriend is a worrier, so I didn't tell him about the last result. After all, it may be nothing. However, I went and forgot about not telling him and then I mentioned it the other day. He got annoyed I hadn't told him and said to tell him. Then yesterday I told him all was well and this afternoon went back and told him what's going on, he seems annoyed that I told him. Damned if you do. Damned if you don't.

I have a feeling it's probably best to not mention to people every little twist and turn in my journey. In fact, I've probably overshared in general. I want to be better about keeping things to myself until I'm clear what's going on and when it will affect others, and only then tell them. It's hard to know who to tell what to and when. I want to be considerate. Anybody have any guidelines?

Peace,

Todd

hardo718's picture
hardo718
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So happy about the good news Todd.  And concerned too because of the slight change in the node.  I'm glad you're going to see a pulmonologist, hopefully it'll give some clarity. 

I believe the difference between pretracheal and medialstinal is that the pretracheal is just a higher location, if you will.  Medialstinal centered in the chest and pretracheal higher up, near the clavical area.

I'm sorry to hear about your boyfriend.  I'm guessing it is out of his concern for you & your health that he reacts so strongly to the information.  Relationships can be so difficult sometimes and compound the emotional rollercoaster, just when we need the straight & narrow huh?  You can always reach out to us when you feel the need.

Hugs,

Donna~

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

They can be so difficult. This makes it harder. My younger son, a few months after my nephrectomy, announced I wasn't there for him when he was young so he's decided not to spend time with me anymore 1-1. We used to meet weekly for lunch or dinner for the past several years.

I'm sure he has a point. On the other hand I think part of his reaction is maybe unconscious self-protection. I worry he's going to regret it someday. I have to respect his wishes. All attempts to get him to work with me have resulted in more and more anger from him.

Yeah. I know my boyfriend gets worried. He doesn't understand the medical stuff very well and he's quite superstitious. I think I'm going to go back into just telling him what's going on when it affects him directly, like me getting another surgery or whatever.

Thanks for the info on mediastinal and pretracheal. I tried to look up online, but I had trouble understanding the definitions.

Hugs,

Todd

JerzyGrrl's picture
JerzyGrrl
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Oh, my gosh, yes. I pretty much (I'm still pre-surgery, possibly watch-and-wait) had a pat answer for folks because what do I really know for sure? I didn't want to play the "Oh, and now they say / think / want..." game with telling folks, only to have them freak for any of several dozen reasons. 

Well Darn. Just we RCC folks want to try to call our own shots, turns out our friends, family, and loved ones want to call some shots and react in their own ways, too. Spent today doing the first of what will probably be a fair number of, "No, honest, don't be choosing your outfit to wear and covered dish recipe to bring to my wake just yet" damage control, amidst much drama and Angst (some of the latter is my own, oddly not related directly to the RCC). 

Hang in there. Determining if something is really a crisis before treating it as such is always a good idea. 

Jerzy GRRRR-L 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

Hugs,

Todd

daisybud's picture
daisybud
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So very happy for you Todd!

;) Kim

sblairc's picture
sblairc
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Awesome. 

Jan4you's picture
Jan4you
Posts: 1327
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YAAAY Todd!!

Thanks for sharing good news!

Now keep on, keepin on !!!!

Hugs, Jan

Footstomper's picture
Footstomper
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Keep it up Todd

stub1969's picture
stub1969
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Happy, happy news, Todd.  Congratulations!

Stub

Allochka's picture
Allochka
Posts: 971
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Oh, Todd, hope this lymph node is nothing. Do you have an opportunity to consult with experienced radiologist? They can often distinguish between benign enlarged node and malignant one based on the looks. It is not only the size that matters. There are other factors - whether node's internal structure is preserved, does it light up with contrast, etc. So perhaps a radiologist could explain his impression about this node, whether it is dangerous or benign?

Also just 2 mm difference could be a measuring error. Recently one member here told that her relative's metastatic nodes increased by 2 cm (not mm) in just one month. 2 mm sound like nothing.

As for the relationships - I am a caregiver and a worrier too (and a hypochondriac, to my shame). Honestly, I would always want to know what is going on. I think your boyfriend was not pissed off, he was simply very worried about you and sad about continuing uncertainty. I am sure all he wants is to support you, and in order to support you to the fullest he needs to know. 

Sometimes I myself choose not to tell smth to my elderly mom. I guess I won't be telling smth to our daughter when she is older but still a kid. But I would tell my partner. He is a grown-up person who has the right to know and wants to help. So is your boyfriend.

Bit this is just my opinion (although the one of caregiver and a worrier :-)), and situations could be very different... Can you talk openly with him about it?

 

 

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Unfortunately I didn't have the contrast. My kidney function is a little bit too bad. That might well tell them more. The CT scan just said it was a "moderately" enlarged node and should be followed. Maybe the pulmonologist can figure out more. I was near the threshold to have the contrast so maybe I can have another scan with contrast to have a look.

I do think I'm going to start holding some info back when things are back and forth/up and down especially from those that seem to be worriers and have a lot on their plates.

Well, he's hard to talk to about anything serious. He kind of shuts down. So there's that. :)

Thanks!

Todd

marosa's picture
marosa
Posts: 333
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here's wishing that your enlarged lymph node is nothing very important.  Lymph nodes tend to enlarge for many, many reasons that have nothing to do with cancer.   Wishing you well.  You seem to be like me a mellow-cool- high anxiety-prone person... we must try to relax and smell the flowers...or coffee!!!

 Thinking of you. Love your posts!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I'm doing that more and more. Stop to smell the flowers. I'm literally doing it. It helps so much. :)

Thank you! Always glad to see your picture and read your posts.

Todd

Allochka's picture
Allochka
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Joined: Nov 2014

Yes!!!

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

You've done this too long to worry about every little thing. Nothing good comes from it. I would not be here now if I put ANY energy into worrying. Effort needs to be focused on moving forward.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

And you're right. I almost didn't worry about it at all. It might seem like it from my post. I just followed up/through. Thankfully, gratefully, I'm better about it than I have been.

It's amazing, though, how something sticks with you. My adrenal met was caught early from staying on top of these things. I do still maintain a sense of real fear when my body does things and the doctors can't explain it. Because that's how my cancer was discovered to start with.

Moving forward, gratitude. Peace. But I will continue to be vigilant! :)

Todd

 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Great news, very happy for you Todd

And now it's party time

Forough

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

That is wonderful news Todd, I'm so happy for you.

God Bless, Donna~

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Super! Obviously your "node news is good news." 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

If you don't, you should. :)

Stand up comedy, I mean.

You're so funny!

Todd

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Gee, thanks, Todd.  I had a friend who was going to drag me to an open mic at a comedy club but we got snowed in. So, what with climate change and all, I'm a little hesitant to try that again. However, humor is definitely a part of my life and work (which includes writing and teaching).

Jerzy

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