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my scan results

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Everyone, I got my PET/CT scan report today from the hospital (I don't see my onc until Monday afternoon about it). Yesterday, just after the scan, I called my onc office to get the results of my most recent CEA test, which was taken on Tuesday. My prior test had come down 61 points over 4 weeks & I was hoping for the same this test, but it did not happen. Three tests ago it was at 277, then came down in 4 weeks to 216. Three weeks later (Tues) it was tested again and this time it went up in 3 wks to 237. So, I had an idea that the scan would reflect that. My CEA had been steadily rising for almost 3 months prior to that recent drop, so I knew there would probably be tumor growth. I was just hoping and praying that nothing new would pop up in new places & fortunately, nothing new showed up- so no disease spread, thank goodness.
The scan did show tumor growth and increase in uptake in the many lung tumors and in the liver. My rectal tumor is unchanged in 4-1/2 months in both size and uptake- didn't get smaller, but didn't get worse either. I think it's only about a 1/2 cm & isn't blocking anything. Now, the growth in the other tumors wasn't huge- the increase in size in most tumors was just by a few millimeters- I still don't have any tumor in me larger than 1.9 cm., to my knowledge.(I just edited that- I originally thought and wrote here that no larger than 1.5,but went back and saw two listed tumors of one being 1.8 cm across, the other 1.9 cm).
Here's some quotes from the scan report:

"Bilateral pulmonary (lung) nodules are innumerable and some demonstrate central lucency. In comparison to to previous study, slight interval increase in size and activity of multiple pulmonary nodules, consistent with slight interval progression."
"In comparison to previous study 11/04/10, PET CT most consistent with progression of metastatic disease. Interval increase in the size and intensity of multiple bilateral pulmonary nodules. In addition, progression of hepatic (liver) disease with increase uptake in nearly all lesions, except one."

I looked up "lucent" and "lucency" in the dictionary because I had never seen that word used on any of my scan reports. It means to have light or be clear. Hmmm... does that mean that the center of some of my lung nodules are clearish? I don't know- that would seem to contrast the fact that they grew slightly and have some increased metabolic activity.
It went on to give specific comparisons on several "lesions" (what makes it a lesion, vs. a nodule, vs. a tumor?), including one particular liver lesion that had the most increased activity, with uptake increasing from 9.6 last time to 14.1 this time. That's a pretty high uptake level, I think, considering that most of my other lesions have an uptake of between 3 & 5.0.

I actually asked for a CD of the film before I left the scan place yesterday. I was hesitant, but I looked at it on my computer. Although I can't determine specifics, I can always tell if it looks less or more intense. I also scanned the cursor over my spleen and other areas and didn't see anything there & it was confirmed in the report today that nothing spread anywhere else. The one thing that really stood out on the CD pictures was a bright yellow spot on my liver & that ended up being the one that had the increased uptake to 14.1. I also saw numerous red blobs all throughout both lungs- it kind of blows me away that all that is inside me! That's why I'm not a surgical or radiation candidate for my lungs- there's way too many of them & they're everywhere in both lungs. They could maybe do something to my liver- I'll have to ask about that. Wouldn't want surgery, cause I'd have to stop chemo for that- but maybe cyberknife or RFA or something- I will ask about it.

Well, I'd be lying if I said I wasn't disappointed, but I am okay. I had a short cry yesterday upon looking at the CD, but then was okay. I really believe that God gives me a peace about such things when I ask. I am talking to Him constantly about this and everything. So, where from here? Not sure- I will talk with my onc on Monday. Last time I saw Dr. Lenz, he told me I would be a candidate for that clinical trial he has that targets the stem cells only if my next scan shows further metastasis. Since nothing spread, I guess I would not be a candidate for that. With things growing, even though just slightly, I doesn't seem like the Gemzar/Avastin/5FU is helping. Although it was just a month and a half ago that my Gemzar dose was upped- I had been getting it on a reduced level for 2-1/2 months (lowered due to low counts). I don't know what's from what. Now, as you all know, I've been doing the detoxes and cleanses and have been taking several herbal detox and immune system supplements the past month and a half- almost two months. A week and a half after starting that is when my CEA first went down the 61 points in 4 weeks. I was so thrilled & was convinced it was from what I was doing. Now that it's gone back up again, I don't know. I'm not going to give up the alternative stuff, as it may just have not had enough time to do its thing yet. I do know that my blood counts the last three times have been really good- enough for the nurses to comment and say "keep up whatever you're doing!". So... maybe it just needs more time to transfer over into my body fighting off the cancer cells.

I will let you know next week if my onc has anything of interest, but he's never been one to come up with new ideas for me. I've always been the one to do that & he's always been fine w/ it and gone along with all I've wanted to do. It's frustrating though, because dammit- he's the doctor, why doesn't he do some research for me?!

Well, that's all for now. I'll be okay- don't worry about me. I'm not going anywhere yet, that's for sure!

Lisa

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi lisa,

sorry your scans were not more positive and that dam cea edged up.
your doing almost everything possible.
you are very inspiring.

i also know that frustration with the onc. mine is good. I have put her in the very good onc box. she does her part of the puzzle very well , but will not look beyond. vitamin d3 was dismissed in a sentence. so we have that element of treatment in common that we are driving our survival not the onc's .

just look at your good bloods.
what a joy you could have full strength chemo.
mine have been pretty good as well.
i have not missed a chemo and i have been feeling great mostly.
today is an exception.
have you read the anticancer, I think you have it gives me such hope. to be given such a book that to some extent re-inforces many of the treatments I am trying.

love pete

ps you can call me the straw clasper. Here's hoping one or some of those complimentary supports does the trick for you and for me.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Pete,

It's somehow comforting to know we're in it together and that you have some of the same issues with your onc.
Yes, I have the "Anticancer" book, and it is a good one. I am not going to give up the alternatives- I do believe they have increased my overall health and definitely have affected my bloodwork in a positive way. Perhaps just more time is needed for it to do some work on the tumors. Although the report did say that some of my pulmonary nodules demonstrate "central lucency". I've never seen that on a report before & looked up the word "lucent" and "lucency". It means to either have light or to be clear. Interesting, if some of my lung nodules look clear in the center- I'm wondering if that could possibly mean the centers of them are chipping away or dying away? I don't know- that would be kind of contrary to the fact that they slightly increased in size and in metabolic uptake.

Ah well- pushing onward and forward...

Lisa

Erinb
Posts: 295
Joined: Apr 2010

Not bad news, Lisa especially with the jump in CEA you always have to focus on the positives-CEA went down, cancer didn't spread, blood work looks great, and tumors are less than 1.5cm! Plus your onc has a plan for you if it does spread.

Erin

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Lisa,

Radiolucent means that the x-rays are able to penetrate the particular area. Gas is radiolucent because the x-rays can go right through it and it will show up darker on the image. Whereas radiopague objects will block the x-rays and show up lighter, such as bone.

The IV and oral contrast that is given for a CT is radiopague and is white on the images. The oral viualizes the colon and the IV visualizes the blood vessels during the exam.

See link:
Radiolucent definition - Medical Dictionary definitions of popular ...

AS for your question about Lesions, nodules and tumors - I think they are basacially the same thing. They can either be benign or malignant. They are really common terms that refer to unusual masses or growths. Again, they can all be benign or malignant. X-ray reports will refer to a lesion or an nodule. The path report will usually determine the characteristic of the abnormality.

Be careful when reading the reports yourself esp. the pet scan. They can be very scary. I am a ct tech, I will not read my husband, Jimmy's reports. The radiologist has to mention every little detail and it can be very intimadating and worrisome. Jimmy's last ct was not great but I am going on how he feels and looks - and I am letting God guide me.

I hope this helps and is not too confusing.

God Bless,

Jan

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lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Graci,

You are so sweet & put a smile on my face :)
So far as the scan report comments of "most consistent with progression of metastatic disease", well my scan report in Nov. also said that, although then only one nodule grew in size (it doubled) even though almost all nodules had increased uptake & even with that Dr. Lenz said he didn't consider tumors growing as progression- it would only be considered progression in his book if I had new tumors pop up.
He's not my main onc, but one I've consulted with now twice (and conferred with by email a few times). I will still email him with these results & see what he thinks this time.
Yes, a weekend to wait, but at least I'm not still waiting for results.
It definitely could have been worse, so I am not completely discouraged, but still a bit disappointed.

sasjourney
Posts: 395
Joined: Jul 2010

Dear Lisa,

I have been anxiously awaiting your post today and I'm sorry the news wasn't better, but the fact that there is not further spread is great news. I would definitely ask about the lucency issue. That could be very good news. Also, your CEA is still lower than the one that was three months ago and that is good,too. All the alternative therapy is keeping your blood work strong and making you feel better overall. Maybe it is time to switch up the chemo a little...maybe go back to one that worked previously since it has been a while since you were on it. Or maybe look into the radiation options for the liver...there is a radiation oncologist at UCSD that I have heard great things about...thinks way outside the box. That's what we need!

I understand your frustration with your onc...mine is the same way. Time to talk to Dr. Lenz again. There will be a new plan coming. Leave your worries to God...He will take care of you. That is one thing I am certain of.

Big hugs to you,
Sara

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Oh, don't you just hate it when, in your heart, you know what you want to hear and then you get the results/reports and they don't word it in the words you want to hear? I think that is the most aggravating, because we want something so badly and we are even willing to settle for second best... and then they throw words at us that are not in line with what we want to hear or see.

But, let's look at it from the top. You knew you had multiple nodules/lesions/tumours, whatever we want to call them in your lungs. Those have been very consistent and a pain because they just aren't going away on their own... but the good news, you don't have any new growths. That actually far outweighs the fact you do have growths that you know about. So 10 points on the good side that you have no new growths in your lungs.

CEA. Oh that darn CEA. Whether it's a good indicator for us or not... it still is one of those diagnostic tools that we all fret about, no matter how many times we are told it is not important on it's own, but important with a combination of other tests/tools. Now, remember how disappointed I was when, after that first horrid treatment I had, only to find my CEA shot up to 25.0... from 9.0? CEA has always been a good indicator for me so I don't think it was unreasonable to be upset with an upsurge of that much after I had just been put on chemo. If I remember, your CEA has always been a pretty good indicator for you as well, hence any upward movement is going to give you some cause for concern. BUT, having said that, I did read that sometimes one's CEA will shoot up (temporarily) when there's a change in treatment and that treatment starts kicking in. If the treatment is killing off cancer cells, then the dead cancer cells release more CEA into one's bloodstream, hence the increase in numbers. I'm thinking that might have been what happened in my case, but of course won't know until my next scan to see if the tumours in the lungs are actually shrinking. In your case, you have recently added more Gemzar, as well, you have started your immune system supplements. This all has happened at roughly the same time (in the last month and a half), so it's quite possibly that either one or the combination have had some affect and although the results might not be on the scan yet, they have affected your CEA temporarily.

So, I guess what I'm saying is... although the reports aren't reading like you wanted them to, the lack of the words you want to hear may not mean it's as bad as your imagination is allowing it to be. It's too bad you have to wait the weekend... that's one of the drawbacks of getting your results before actually being able to talk to your onc. I'd be a little more concerned with the onc not doing the same amount of work in looking to see if he has you on the right plan or if there's more that should be done. If not, then he needs to spell it out in detail as to why the plan you are on is the best and what will the next plan be... based on why and what.

As for the liver... that's out of my realm of experience so I won't even pretend to go there. But definitely, if there is growth happening there then you are going to want them to do something about that. I totally understand your thoughts on surgery because surgery means you have to wait until it's safe to have a break from the chemo. That's where I stand right now waiting to see how we are going to remove the tumour from my kidney. If it has to be surgery, then we wait until the chemo for my lungs is finished... right now, it's important to deal with what is growing, rather than what we can remove because we can. So same with your liver...unless they are growing there, then yes, a plan is needed to treat both the liver and the lungs at the same time.

Hang in there, kiddo! You are way stronger than you think... and super knowledgeable so you aren't going into this blind. And we all are pushing for you and know you are going to come out of this just fine! We are constantly reminding each other of all the ups and downs, twists and turns on these journeys of ours. Well, that's all fine and dandy... especially when we are on an up and everything is looking good... it's the downs we all, every single one of us, have problems with, no matter how much we know they are part of the journey.

This too shall pass!

Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

Thanks for the detailed reply. You pointed out several good things, especially about the CEA rise this time. I guess when it's tested again next time that would tell us if it's an upward trend or just a temporary upshoot. I had actually wanted to wait until April to scan to give a bit more time for the upped Gemzar dose and all my naturopathic treatments to have time to really kick in, but the onc pushed to do it now. I'm wondering if, although I've had tumor growth, if my tumor growth actually might be on the decrease now but I just don't know it yet since it hasn't been long enough- maybe it's just had more time to go up than down again and because of that, it still shows as growth since the last scan. Perhaps if I hadn't added my naturopath treatments recently, that the growth would show as even more than it is. That is what I'm hoping.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Lisa, I'm so very sorry to hear this. I'm very disappointed. I've been thinking about you all week and praying for good news.

I'm so glad you have 'peace... not as the worlds gives'. That means so much.

Diane

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Diane,

I know- I honestly was more sad for all the people that this news would make sad, than I was for myself. I know it affects a lot of people, especially in the same week that someone else reported bad scan news and that John shared his very sad news. I wish I could be the one to cheer everyone up- hey, I've done my best! :)

Peace,
Lisa

grannyc's picture
grannyc
Posts: 63
Joined: Oct 2010

I am sorry your results weren't what we were all hoping for. I know you are very inspiring to me. I am on natural supplements and believe they are helping with my overall health, as far as energy level etc.

I have not been posting long but have been fighting the brast for 3 and a half years now. latest met was diagnosed just after Christmas 2010 with multiple liver lessions, so I was also curious about the difference between lessions, tumors etc.

Keep on the supplements and hopefully you can get into the clinical trail

Grannyc

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Granny (your picture doesn't look like you're old enough to be a granny),

When were you diagnosed? Must have been around the same time as me. I was dx'd Aug of '07. We'll see about the clinical trial (always makes me nervous that clinical trials require you to go off all chemo for a month beforehand, but that's the way it is). I think the consensus is that lesions, nodules, and tumors are the same thing. Perhaps nodules and lesions sound smaller than tumors? I don't know, maybe they sound less intimidating than calling them tumors, so doctors use those words instead.

Thanks for sharing- I'll be watching for other posts of yours.

Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

news , no spread, slow growing , in my opinion chemo is doing part of it's job, so it gives you lots of time to think what to do, and search or push
for a trail.
Hugs dear Lisa I will have you in my prayers!

Jaylo969
Posts: 827
Joined: Jan 2010

I was watching for your report today and I was hoping that which you were suspecting was not true. I know you are somewhat disappointed in the results because doggone it you try SO hard!

I am going to spend my weekend sending vibes/sparks/prayers that your Onc will have a good treatment plan for you when you get there.Hopefully he will have a brainstorm and do some research, make some calls,...you know, things we think doctors sometimes do?

I know you'll be okay. I've observed you for over a year now and you are one strong woman.But we still worry about you:)

{{{{{ Hugs Lisa! }}}}}

-Pat

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Oh dear Lisa I'm so sorry to hear about your scan I will still be thinking about you stay strong my dear good new time hugs Tina

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Lisa,
You always have positive things to say when you respond to any of my post's or anyone else's for that matter. I am sorry you didnt get better news. You have such a big heart and help so many on this board. I wish I could give you a big hug, how about a cyberhug?
((((((((((((((((((((((((((((LISA))))))))))))))))))))))))))!!!!!!!!!
(((((((((((((((((((((((((((LISA ))))))))))))))))))))))))))!!!!!!!!
I'm Sending positive energy and prayer It's the best I can do. I don't have the knowlege that so many semi colons have about this nasty disease, but I hate it just as much.
Peace,
Tom

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm sorry to hear that the results weren't better. But at least there has been no spread, and only a little bit of progression. I pray that one of the combos you do turns out to be the one to turn things around soon.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I'm pretty upset to hear this report. There is some good and some bad. I guess my hopes were a bit high. However I am very heartened by your tone and attitude.

I think your natural treatments need more time. I wonder if the Gemzar needs more time as well. The only way I can wrap my mind around progression is to think about it in terms of percentage increase. Maybe the percentage increase is low enough to be acceptable; and staying the course is the best option. It seems the further along we go, the muddier the water gets. I hate it that your onc isn't more active.

Kim always gets a cd of my scan as we leave the place. It "blows me away" as well to look at all that stuff.

I'm really curious to hear what your onc says Monday.

Take care Lisa.

Roger

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

I am sorry about your CEA levels moving up. I am happy that nothing new has shown up on your scans.

If your doctor doesn't do enough legwork for you, could you possibly switch to another doctor? You are so proactive in your research, you deserve a doctor that will work just as hard for you.

I'm cheering for you,

Sandy

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lisa,
You are an amazing woman my friend. I am sorry that things weren't better with your scan. I am glad that there has not been "progression". Lisa, I'll keep praying for you. Your faith inspires me. Thinking of you daily.

Aloha,
Kathleen

taraHK
Posts: 1961
Joined: Aug 2003

Hi Lisa,

I can certainly understand your disappointment. It's good to have a short cry!

I don't want to be "Miss Pollyanna". However, I'm not sure I'd necessarily agree with you that your current chemo "isn't working" -- it is keeping the beast at bay. While you may have "progression of metastatic disease", it seems to be an extremely slow progression.....Almost stable, really.

Of course that doesn't mean don't explore other options! It sure would be nice to have something more powerful/effective, for your situation. But if it's not available today, it may be available soon - and you are hanging in there!

I am a member of that "tribe" who is unlikely to be hearing the word "cure", and is likely to be on chemo for the rest of my life (hopefully with some breaks). I figure, I just have to keep two steps ahead of the beast, and be able to tolerate the treatments, and maintain a decent quality of life. I am doing that -- and so are you.

Sending love prayers and best wishes

Tara

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry you are disappointed. It sounds mostly stable, which is good but I know more would be nice. I hope that the results you are looking for will come in the near future.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

You are an amazing woman. Just amazing.

I'm glad to hear you're not giving up the alternative stuff. It's not exactly the best scan, but it's definitely not bad either. Things sound about stable with a little bit of growth. No new growth. :)

Just know you're still in my prayers. All of CSN is.

Love and Hugs,

Holly

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thank you everyone,

You don't know how much it means to me to come on the board and read your replies to me. I'm sending you all hugs- thank you :)

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Shoot, so one scan sucks, give it time, maybe the next one will be better. I'm not into the detox's and alternatives so I don't have a great opinion on them. (don't throw stones at me darn it people, it's just my opinion) I would think if it's going up (CEA) then I would stop the detox's and alternatives, I mean so a month and a half after you start may not have been enough time for it to affect your system, and after more time it has. I don't know. I would wonder about it though.
I just hope that no matter what you do, that it starts going back down, and that your tumors start shrinking!!!
Winter Marie

dorookie
Posts: 1736
Joined: Jul 2007

and I continue to pray for you my friend, I am sorry the results werent a little better. I too wish the doctors would do a bit more for all of us, seems we all should be given an honorary Doctrine after all we have been through. I sometimes feel more comfortable asking people here then doctors...LOL

Stay strong, keep the faith as I know you will, and I will keep you in my prayers like always..

HUGS
Beth

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Hugs you know I already vented to you on facebook. As I said to Melissa I'm disappointed that the results were not what you were expecting for you both. :-( But I will keep praying that your alternative/and chemo will start working in a much stronger way.

Hugs, if cancer has given me one thing is meeting wonderful people like you and my csn family online. :-)) I agree what you said to me on facebook.

Love and hugs to you.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Lisa.

You better not be going anywhere yet! We're counting on you being here! I'm sorry the results weren't as positive as you had hoped, but I pray things will turn around very soon.

*hugs*
Gail

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

u r in my thoughts

michelle

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm late to the party, Lisa. I'm watching all of the naturopath stories to see how everyone fares. I can understand how you could be wondering if taking the supplemental program is helping or hindering your situation.

Wish I was smart enough to know one way or the other. I applaud you exploring the possibilities and maybe more light will be shed as you move forward.

You're still with us, so I take that as good news:)

You know I've watched you for nearly 2 years and how you've fought this fight - you know I'm beside you as we fight on.

-Craig

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