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Good news (scans/doc) today!


LexieCat

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@Sabacat They did a CT scan to determine where they were supposed to "aim". Marked me with sharpie marker that they covered, then lined me up based on that each time. After 1 wk, they redid the CT scan to make sure they were still aiming right. (Obviously, that is my interpretation of what they told me.)

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2 hours ago, Tom Galli said:

Lexie,

I find the most important paragraph in any scan report is "Impression." In my scans, I still see references to nodules, hyper dense structures and such. But the impression paragraph has words that suggest no active disease. I hope yours states the same.

Stay the course.

Tom

Hi Tom:

This is what's written on my last report:

Conclusion: 1. Stable post radiation change in the medial right lung with volume loss and mediastinal shift. 2. Moderate right pleural effusion is slightly larger than on prior study from 10/8/2020. 3. Mediastinal lymph nodes measure smaller than on prior study. 4. Right lower lobe lung nodule measures smaller than on prior study. 5. No new metastatic sites are seen.

When I asked my oncologist if he knows whether or not the nodules are cancerous his answer was "We only know if we perform a biopsy". The biopsy have to be done with open surgery so I am back in No Man's Land.

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Gary, the vast majority of lung nodules are not cancer. So they follow them--even people who have never been diagnosed--as they do ours, only with less frequency.  If they are not changing in size, they are presumed to be scar tissue or something equally benign. As long as they stay the same size, I think you're in good shape. I forget what you told us about what your doc said about the effusion.

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Actually, I’m not sure they are looking at it every time.  They did a CT simulation before we started, and put all these markings on me.  They use those to line me up on the machine and then (I just learned today) they take an X-ray on Mondays and Thursdays to ensure that the alignment is still spot on.  They said the X-ray is only seeing ‘bony anatomy’.   Seems weird, but what do ai know.  Will ask more questions of the rad onc on Monday

PS - should have looked at the earlier replies - Jennedy’s experience sounds just like mine 😊

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1 hour ago, Jennedy said:

@Sabacat They did a CT scan to determine where they were supposed to "aim". Marked me with sharpie marker that they covered, then lined me up based on that each time. After 1 wk, they redid the CT scan to make sure they were still aiming right. (Obviously, that is my interpretation of what they told me.)

Thanks!  This sounds like what’s happening here exactly.. Will see if they do the updated CT on Monday, but betting that’s the case.

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1 minute ago, LexieCat said:

interesting. I would think the CT would be much more helpful in terms of aiming. Let us know what you find out--now you've got me curious.

Doesn’t sound all that precise to me, either, but what do I know? 😊

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When I had radiation for breast cancer, they gave me tatoos that they used to line up the machine. I still have them, of course. Unfortuately, they're not decorative, just little black dots. I think I should have had some choice, so I would have something to show for that cancer treatment other than surgical scars and little black dots.

Bridget O

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10 hours ago, LexieCat said:

 I forget what you told us about what your doc said about the effusion.

Hi Lexi: I was diagnosed with lung cancer because I was hospitalized with pneumonia that can cause pleural effusion. My oncologist is not worried about it since my oxygen level using an oximeter is 99% and I don't have any symptoms that cause for alarm (so far  keep your fingers crossed).

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Great--then it sounds to me as if you're in better shape than "No Man's Land." I'd love for us all to have something more reliable to tell us (and our docs) what's going on. But until they come up with a cancer crystal ball, we gotta make do with what exists. Overall, your scan report (especially with the background of the pneumonia causing the effusion) sounds pretty encouraging to me! I totally get not letting ourselves get carried away thinking we're "cured" or out of the woods for good. But at the same time, I think about people (a few of them here) who are still in good shape 15-20 years out, with less advanced medicine than what we've got now. And I like to think there's no real reason for me not to believe it's possible I'll be in that group and kicking around for quite a while. I'd hate to have all that time pass just waiting for the boom to drop. 

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Hey, James, was just wondering (off topic, as these threads are prone to do) whether they eat lefse in Sweden. My daughter and I just made some (her first time, but she rolled them out and flipped them like a pro) and they were SOO good. She bought me the lefse griddle a few years ago, but usually I'm the one visiting her and her brother out in Colorado at Christmas so we haven't had a chance to make it together. My family is mostly Norwegian and my grandmother made wonderful lefse right on top of her wood-burning kitchen stove. I never really learned from her when I had a chance, but finally found a good recipe with details about technique and preparation (it's really a two-day project, even for a batch using only five pounds of potatoes), and they come out VERY much like my grandma's lefse!

For anyone wondering, here's a pic below of a stack of the pieces we made. It may LOOK like a tortilla, but it's actually potato dough (with butter, salt, and sugar) and a surprisingly small amount of flour. You roll it out VERY thin (thin enough to read through), pick it up with a wooden lefse stick (which looks like a very thin sword), bake it about 30 seconds on each side on a lefse griddle, and serve it with butter & sugar, maybe cinnamon, or some like savory toppings like fish. Great anytime, but especially on holidays!

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19 minutes ago, LexieCat said:

Great--then it sounds to me as if you're in better shape than "No Man's Land." I'd love for us all to have something more reliable to tell us (and our docs) what's going on. But until they come up with a cancer crystal ball, we gotta make do with what exists. 

Lexi: I was not complaining or expressing dissatisfaction by describing the situations as in no "man's land". As an engineer  I have an inquisitive mind. I want to learn and understand how things work.  I also do not agree with "we gotta make do with what exists" because then we take our health providers words for granted,  stop asking questions and seeking second  and third opinions. I also try to explain in my posts my interactions with my medical team in details so to benefit other patients and seek answers.

Granted oncologists have no crystal ball but they must have a way of knowing when to declare N.E.D even when nodes  and enlarged lymph nodes still exist.  I remain hopeful, grateful  and plan to fight my cancer all while being realistic.

 

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Oh, I didn't take it as "complaining"--I just thought your scan sounded more positive (in the non-cancer sense of the word "positive") and "no man's land" sounded kinda bleak. 

I agree we should ask questions and get multiple opinions sometimes, but I also want to make sure the docs who are making predictions aren't doing it just to make me feel better. 

I'll be very interested to hear what your doc has to say when you ask about NED. It does seem to me that some doctors use that term and others don't (or use it in a different way). It's sure not clear to ME. I am pretty confident my doc is on top of the research, etc., and I think he was doing his best to convey what he knows at this point.

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1 hour ago, Rower Michelle said:

We’ve been having some good e-fun in our discussions this week- from interesting new foods to selecting cat names...  can’t wait to bust out of COVID jail.....

Well Michelle you have to wait your turn. Us older and crippled go first.

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Lexie,

I have no idea why I am just seeing this today, but congratulations are in order and it really is good news.  So glad to hear it.

Lou

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