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Symptoms From Tumors Showup Before Scan Sees Them?

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

I've asked this question before. For some reason I can't remember the answer or maybe I didn't get a definite answer.

First of all I don't really understand the difference in sensitivity between a contrast CT scan and a non-contrast CT scan. I can't have contrast, so I'm always worried they are going to miss something. Does anybody know if it's a small difference, or a big difference? Do they have to read the contrast scans just as carefully as the non-contrast because some things don't "light up"? My oncologist seems to not be worried about the difference but then he doesn't seem to be worried about much.

The other thing I'm wondering is if you can feel symptoms on a tumor before they see it on the scan? I had a scan a month ago but have developed an extremely painful area on my left rib cage along the edge next to the solar plexus. I know I didn't injure myself and there's no bruise or any discoloration. It's painful to the touch. In fact, it hurts when I take a deep breath and also when I raise my arm over my head. I tend to think it can't be a met because I just had a scan a month ago, but it was a non-contrast scan. It was a CT. I know for bone mets the best test is a nuclear bone scan(?). Can't remember what it's called. Something like that. I've had one once because I had a spot on my femur that was suspicious.

The urgent care for my cancer hospital is 2-3 hours drive away, so I don't head over for small stuff. My family doctor is also a good 45 minutes drive and he doesn't know squat about RCC. Then there's the ER. It's close by, but you get hit with a pretty hefty copay and a long wait if you go with something like this. Similarly I don't go unless I feel it's really important. I'm always in a quandry where to go when symptoms come up....

I told myself I'll wait two weeks to see if it gets better before I do anything. It's been a week and it's not getting better. Maybe even getting worse. Now the anxiety is starting to eat at me.

It's probably just a pain that will go away. I just wanted to talk to somebody about it. My family is over my cancer. Lol. I wish I was.

Hugs,

Todd

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

Seriously. How's the weather? I've found myself with pains in odd places when suddenly it's more humid and colder than usual and especially if I've been sitting in a draft. Also, have you eaten anything lately that triggers an inflammatory response? When I have dairy products or stuff from the nightshade family (tomatoes, potatoes, peppers, eggplant), I feel like I'm fixing to die. No, actually, I'm sure of it. 

Not answering your question, but I would suggest maybe doing those things that naturally raise the levels of the body's kicking-pain's-butt chemicals. 

Once we have RCC, suddenly the answer to everything is RCC. Sounds as though you've got a good plan, now if you could just go from fixating on it to not in the meantime... (Try not to think of pink giraffes, right)?! 

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

The weather is sunny, clear but cool. This is a very specific spot about 1-2 inches in size that is extremely tender to pressure right on the point of the rib cage next to the solar plexus. It's not really a generalized pain. It's incredibly painful, like pushing on a bad bruise. But there's no bruise and I haven't injured myself.

You're right. It may have nothing to do with RCC especially since I had a clean (but non-contrast) scan a month ago.

I've had a met already, so I'm not a complete hypochondriac. Really. I'm not. :)

This is exactly how my met was discovered. I had a pain and I went to the cancer hospital's urgent care. I wasn't scheduled for a CT but they did one anyways, then they found my adrenal met. Turns out it was on the previous scan too but they had missed it.

But, yeah, it could just be being 55 and the weather or some other random event.

Thanks!

Todd

 

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

I also cannot have contrast.  My oncologist said a year ago that he was going to stop ordering scans of abdomen and pelvis because they are useless without contrast.  I asked how we would ever know that there is something going on there and he said only if I had symptoms.  That scares me.  I have insisted a couple of times that I wanted one anyway.  Insurance denied them, but after a peer-to-peer review got them approved.  I called a radioligist and he said that he wouldn't call them useless.  It depends what type of tissue  is affected.  CT's are good at showing some tissue and MRI's are better at others.  I tried asking for an MRI since the contrast is safer, but my kidney function has diminished to the point that even that is too risky.  Even without contrast, I have to believe that a large tumor would show and I know that even a large tumor may not cause symptoms.  I'm going to continue asking for one at least every six months.  I just can live with not doing them at all.  I tried to get a radiologist to say how big they would have to get for them to show without contrast and couldn't get an answer.

I know what it is like trying to decide whether to ignore a symptom or make an appointment to see the onc or go to the ER.  When you start feeling something new, you wonder "Is it the cancer?  Is it a side effect of the treatment?  Is it a side effect of the drugs I'm taking to counteract the side effects of the treatment?  Is it some new thing unrelated to the cancer?  Or, of course, is it nothing?"  Often I google some new term showing up on a scan or new symptom, and it often starts "As we age ....".   I have the same quandry.

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

That's what found my adrenal tumor, so, obviously, not useless. But, they didn't notice it until the size/shape of the adrenal gland changed. Then when they looked back 6 months they also could see it. Still, it was found before I had definite symptoms. I was having weird symptoms, but nothing that was ever tied to that adrenal tumor. My blood pressure went down after they removed it and I had been having bouts of severe vertigo at times that went away after they remove it. The truth is, the body is incredibly complex and generalized symptoms are hard for them to track back to a single problem.

Cancer sucks.

Hugs,

Todd

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

I've had those suspicious feelings/pains, too.  My first thought is that it's a cancer thing.  After a number of false alarms, I've tried to be more laid back about these things.  My belief is that my quarterly CT scans will be the first indicator of a new met.  I'm pretty sure that I've had that confirmed by my oncologist.  As to the with or without contrast issue, I've had both.  My understanding is that the "with" version is marginally more useful in my situation. 

Keep monitoring the pains.  Trust your instincts, too.  You've had plenty of experience with cancer to have a feel about what should be of concern. 

Cancer -- it sure does a number on its victims.  We're cursed with having to put up with these worries. 

Dutch

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Hi Todd,

I'm a professor in medical imaging so this question is exactly my wheelhouse! First, CT contrast and whether a scan is as good with or without it greatly depend on what you are looking for. Non-contrast CT is best for areas where where identifying calcifications is important. Examples of this would be vascular disease, some pancreatic masses, also kidney stones are best without contrast initially. Lung scans are also better without contrast. Aside from that, most everything else (with a few exceptions related to trauma) is better with contrast. Neoplasms and cancer staging is superior with contrast. The vascularity of a mass and the pattern it presents when taking up the contrast (arterial phase or venous phase) can help determine its nature. The way I've told students to think of contrast vs non-contrast is this. A non-contrast exam is like looking at a familiar room with the lights out. You can make out shapes and maybe that something is there but you can't tell for sure if it's a shadow or something and if so, what it is. With contrast, it's like turning the lights on in that room. Now you can make out specifics and decipher shadows from objects and see edges and borders. A CT without contrast is better than none at all (none at all means you aren't even in the dark room so you can't even see the biggest of objects), and a contrast CT is better than non-contrast for neoplasms.

 

As for your pain, have you done anything strenuous? What you are describing sounds almost like something called constochondritis. As for imaging bone mets, bone scan and contrast enhanced MRI are the superior techniques. CT is subpar to those with plain radiography being just under CT. However, the risk of contrast vs the benefit of the contrast must be weighed. 

 

Hope that helps!!!!

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

It is helpful! Thanks.

I think you've hit it! I absolutely think it's the cartilage between the rib joints. I just did some reading on it, and it happens most often on the left (which is where I have it). PA never mentioned this during my exam. Do you think anything would show up on an xray?

This is why I'm not a fan of PAs. Hope I'm not insulting anybody...I just am not excited about somebody with 2 years of education and a few months hanging around a medical office diagnosing me. And when you consider the office visit costs almost identical, it's a really bad deal.

I don't remember doing anything strenuous. I had hurt my back the week before but it healed up by the time this happened. I have had some very rapid weight loss and have been exercising more. Maybe I did it exercising...

My nephrologist said I can have contrast. My kidneys aren't too bad. My creatinine has been 1.5-1.8 range. She said as long as they give me some certain drug with the contrast and hydrate me well before and after, she's ok with me having the contrast. However, my oncologist said he doesn't want to risk it. He wasn't that concerned about having the contrast.

Thank you for your help Kat. Thank everyone for your comments. It really helps to hear from you all.

Regards,

Todd

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

and Kat, you both should find this interesting. I no longer remember many details and dates but this is close enough. About march 2014 I was doing my same fitness and strength training as I had for decades. I had sudden right biceps and deltoid strength loss of 25%. By may I developed intense pain in my neck and right arm. Weakness increased. Remember that I'm a physical therapist and was able to tell my oncologist, neurologist, neurosurgeon, radiologists, and all their aprn's and everyone else who saw me, that the origin of my pain was from about C3-4 to about T2. But also that my right brachial plexus was involved as I developed parsonage turner syndrome.

I had scans,mri's, of my brain, my spine, my shoulders, emg's and who knows. Nothing ever showed. I was living on oxies until feb. 2014 when I was admitted to the hospital. On my death bed. Finally the intradural tumors from the base of my brain to T2ish showed up. That and the brachial plexus tumor(s).  I had nearly 100% loss of function in my rt. upper extremity. 50-75% loss of left arm. I developed rt. footdrop.

It has been 3 years now. Most motor function has returned but with strength and sensory deficits. I have lost 60# of muscle mass. It's been a lot of work recovering from tumors I could describe but they could not find. Now remember what I tell you about worrying?

 

 

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

Fox,

Did you mean march 2013 then february 2014 or march 2014 then february 2015? Either way, I'm assuming you're saying you felt it months before it showed up on scans?

When I was writing the post, I was already playing your message in my ear about worrying. Lol. I'd told myself I was going to wait 2 weeks before I did anything about this, then yesterday the pain got close to the 10 level and I decided I needed to look into it in case it was something important even if it's not cancer. Not sure it's every a good idea to ignore intense pain that is unexplained...

Anyways, I still don't know anything. I emailed my oncologist and his PA, no answer. I went to see my family doc but he wasn't free so I saw his PA. She couldn't figure out what it is. She wants me to get an xray, but the xray machine was broken at the center near her place...blah, blah. I'm not sure what an xray will tell us when I had a CT a month ago, unless it's something brand spanking new...

Ok. Not worrying. But still have to follow up with this cr*p.

Best,

Todd

adman's picture
adman
Posts: 338
Joined: Jul 2012

Curious; Does the new 128 slice CT technology machines give a much better picture without contrast ?

I had a scan a few weeks ago with this new type of CT. 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

My understanding of the machines is the issue with contrast vs no contrast is telling if something has a blood supply.  The contrast is in the blood system, so something with blood (like a tumor) lights up.  Cysts don't.

adman's picture
adman
Posts: 338
Joined: Jul 2012

'Kat', do you know about the '128 slice CT' w/o contrast?k

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