Wishy Washy Words--Scan Results

KEW

I'm coming up on my one year, and in the last few months I've had to have a lung CT, that showed 2 calcified nodules, nothing to worry about.  I had 3 that were less than 2mm--report read something like--these are my words---lung mets (are the words I'm concerned with and I can't remember the term he used), now the radiologist "unlikely, suggest follow up CT in 3 months." OK, I'm having that next Friday 3 days after my one year.

So, for about the last month I've had a ton of shoulder pain, which I've had before--several years ago--so I have a bone scan, my words--arthritis in both shoulders, hands, and wrists, and right pelvis area.  Doctors words "Likely due to degeneration, neoplasia unlikely, suggest rescan, interval to be determined by oncologist."

I had an MRI since the bone scan didn't reveal a reason for my pain, and they found bursitis and tendonopathy...and some words equivalent to mets being "unlikely." 

All my blood work is good. 

I've known about my hands and wrists for several years-I used to be a rower and I think it took its toll on my bones.

What I don't get is do they use these words because they don't want to say "no mets" so they don't get sued later, or do they use these words because they really are not sure?  I want to see "NED", not "unlikely"

I should say that I had no scans after diagnosis and surgery, so I have no comparsions.  I had a chest Xray, but that was all. My oncologist felt that with clean nodes, fairly low Oncotype, and slow growth rate that scanning would likely pick things up that weren't a problem, and then I would get caught up in the rescan cycle--which seems to be where I am. I had two tumors that the pathologist combined and that is how I got a 2.6cm tumor.  I went in for the lung CT because I had been coughing for a couple of months.  My onc sent me to a pulmnologist, who diagnosed post nasal drip and I took Zyrtec for a few days and the coughing stopped.   

Thanks for your thoughts on this,

KarenW 

Rachel_BC

Hello dahling... OK so we know the reason why they don't usually do the PET/CT scan, like for everyone even without SFBC is because it shows up even stuff that would never even happen in your lifetime or looks like it might be something when it turns out to be nothing after some long invasive procedure... (on the not-so happy side the other reason they don't do it for SFBC patients is that there is no advantage to discovering a metastasis early See: I'm done with my treatment, now what?  If that link doesn't work, its under Forum: Moving Beyond Cancer: Getting on with the rest of your life, from rediscovering intimacy to coping with hot flashes. and specifically quotes this page from Johns Hopkins)

OK, that said, after surgery while waiting for test results I had a PET/CT scan because I didn't understand what this whole recurrence thing was about and I was planning on not taking Tamoxifen.  Whatever, I got the test.  So it comes back and I am all happy there's nothing bad going on with my brain, that's sure nice to read, and the whole thing is good news, and its nice to see it found stuff I already knew about (fibroids, diverticulae).  BUT it had these two notations on it (I have a copy) "Focal coronary calcification" and "evaluation... possible stemoclavicular/inflammatory joint disease...".  WHAT?  There's calcifications on my heart?  I might have inflammatory joint disease?  WHAT?  ONC says it's nothing but I figure he's only worried about me dying of cancer, meanwhile what about heart disease and arthritis? And you know me, little Miss Research and Ask Questions and Fight for My Health blah  blah blah...   So off I go to find a cardiologist and rheumatologist. (sp?)  Most of which didn't want to bother with me.  But through family and friends I get to some top docs and the cardiologist and my PCP say "everyone over the age of 20 has some calcium on their heart, it would be weird if you didn't".  And I was feeling tenderness over my shoulder blade that I never thought about before, and thinking that was my clavicle, I begin to go nuts reading about inflammatory joint disease.  Finally a friend of the family is a big rheumatology guy and I call him up and tell him my concerns and the first thing he says is "Well, it's not cancer".  This threw me, because it was the first time I had called about a medical problem and had cancer thrown back at me.  Took me a moment to steady myself because i realized that from that point on, every single doctor who is any good will HAVE to consider whether something is cancer first.  OK, not cancer.  And it's probably not inflammatory joint disease either, because evidently that's not how and where it starts.  Even if it is inflammatory joint disease, there's nothing that could be done about it, such is inflammatory joint disease... that one there is no advantage in finding it early, no prevention.  And since my TX for SFBC is Tamoxifen and Zometa, both originally intended to strengthen bones, if I did have inflammatory joint disease and if there was anything that could possibly help it, those drugs would be helpful.  And to top it off, my clavicle is not on my shoulder, its by my neck, so I was feeling all weird for nothing.  Which brings it back to the first thing we knew was why they don't do the PET/CT scans.

Also, I was disappointed to find out that the PET/CT scan will only find cancers that are 1cm or larger, so for my original purpose, I still have no idea if the SFBC cells got out and about in my system.  This is when I learned the second thing that sucks about cancer, that you don't know when it's gone. (The first is that you don't know when you have it.)

All this to say, when a PET/CT scan says "likely due to" and "unlikely", they mean just that.  So it's perfectly reasonable and normal for you to be worried that it has metasticized to your lungs, and the docs seem to be following up with diligent care and testing, which so far indicates that you probably (that is very likely, statistically, not loosely speaking)  are feeling the effects of being a rower who is getting old, and if Zyrtec is stopping your running nose, that's probably from something not related to SFBC.

As far as getting sued, they'd get sued if they didn't check you every possible way just to make sure, so you're getting checked!

So the PET/CT is in 3 days?  Remember to bring a CD of music you like, they usually let you listen to it while you're hanging out inside the scanner for like half an hour... and you might want to stay away from babies and older sick people, there's different instructions because you'll be slightly radioactive.  I highly recommend Pig N Whistle blues.  Each song is about 2 minutes if you're REALLY bored you can try to keep count.

Hope this helped  

TammyLou

My sympathies. I've been scanning for about 5 years now, and I've never seen "No Evidence of Disease."

(sigh)

We got a whole lot of possible, and recommendations for follow-up and "Not Definite Evidence"s.

I am sorry to say that this is our lot.

(A whole lotta' "idunno" which is definitely better than IS...sigh.)

I hope everything turns out okay, Karen.

Please keep us posted.

tl

Rachel_BC

Oh and get copies of all your reports!!!!  It's your RIGHT.  Then you won't have to be guessing and using your memory a year later!