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Got CT Results today.....

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

And I'm blind-sided and upset. Last time I had a Ct scan was in December and my oncologist said I needed to do a follow up in March because my thymus appeared enlarged and she needed to confirm it was my thymus and not anything else. With the follow up CT the thymus should have returned to normal size but if it didn't change in size if could be more sinister. So these were the results:

Chest: A subcentimeter subpleural nodule in the anterolateral left
upper lobe at the level of the tracheal bifurcation shows
questionable slight increase in, now measuring up to 3 mm,
compared with perhaps 2 mm previously. A slightly larger
subcentimeter nodule in the posterior right lung base appear
stable. Also now noted is a third approximately 5 mm nodule within
the superior segment of the right lower lobe at the level of the
tracheal bifurcation. In retrospect this may have been subtly
apparent on the prior study. It does show some clear interval
increase in size. No focal airspace consolidation or effusion
noted. There is no bulky mediastinal or hilar lymphadenopathy
present. Some residual thymic tissue within the anterior
mediastinum appear stable. No rib or chest wall lesion
demonstrated.

Here is the Ct report from Dec:
There is a soft tissue fullness identified in the anterior
mediastinum, new onset since June 22, 2010, compatible with a new
anterior mediastinal lymphadenopathy. It is identified on image
21/114, measuring 3.4 x 2.0 x 2.8 cm in the craniocaudad, anterior
posterior, and transverse dimensions.

There is a minimal pulmonary scarring identified in the
laterobasal segment of the right lower lobe.

There is a pulmonary nodule identified adjacent to the right
hemidiaphragm in the mediobasal segment of the right lower lobe on
image 42/114, measuring 0.3 x 0.3 x 0.4 cm in the craniocaudad,
anterior posterior, and transverse dimensions. The area was
obscured by a postsurgical pulmonary infiltrate on the CT scan of
June 22, 2010.

SO after reading the reports I am so upset that that she never mention nodule in my lungs in december. I feel cheated. I asked her what the plan was and if we should start 5-fu and lecouvorin and she said NO they are to small and the only thing we can do is rescan in another 3 months. So family what do you suggest , besides switching oncologist?? Please tell me what you would do... I do not like the lets wait and see approach, I mean what for, to see if more nodules pop up?? No Thank You -Melissa

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

Melissa, I'm so sorry your results were not better. I don't understand the CT speak well enough to know how big a change any of it was. Would you mind if I prayed for you?

Diane

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

I do not mind at all if you pray for me. Thank you so much :)

z's picture
z
Posts: 1251
Joined: May 2009

Sorry about your nodules, they are quite small. My initial dx was anal cancer, and on a follow up scan my 7 mm lung nodule was found. They only wanted to rescan in 3 months to see if it grew and it did to 11 mm so it was decided to have it come out. The only way to know if the nodules are cancer is to biopsy them, and yours are so small it would be too difficult to do a needle biopsy. I know Buzzard had a nodule that was removed, and he will probably chime in. I understand you not wanting to wait for more to pop up, but maybe this will be it and it could be inflammation. I wish you well Lori.

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

My oncologist said the same thing, that they are way to small to biopsy, just sucks knowing that now my lungs are infested with this crap.

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

I would ask for a pet to si if this little nodules and adenopathies are lighting , just to keep you tranquil .
Wish you the best!

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

For some reason my oncologist never wants to do a PET scan. She always says that PETs are not for colon cancer follow up. But I just switched oncologist like 5 minutes ago and have an appointment for this coming tuesday and my husband and I will ask for a PET.

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

I'm sorry about your CT results. Overall it sounds like your oncologist is on track, due to how small the growths are. But I would want a PET to see if there is activity which shows probable cancer or not.

I don't understand your oncologist saying that PET is not for colon cancer follow up. That is all I get right now - PET/CT. Since my progression has been in lymph nodes only so far, those are hard to pick up on CT alone, and you don't get as much information on whether something is benign or cancer. A PET/CT can give more answers. Push for A PET for your peace of mind - the more information you can arm yourself with, the better decisions you can make.

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

Hi Melissa,

I know it's disappointing and I'm surprised your onc did not tell you about them when she first heard about them (Dec?). Then again, if you are anything like me, she may have mentioned them and it was one of those things you just didn't hear because you were focusing on the thymus. I know, and I would swear to it, that I never heard the first time they said they found nodules in my lungs. At the time, we were also dealing with a tumour on my adrenal gland, which was a strange place for a colon cancer met, so I was freaking out about that... and did not hear about anything to do with the lungs. To this day I would say I wasn't told, but I had a friend with me at that appointment and she was very adamant that we did talk about it, that my onc went over how I had multiple, very very small nodules throughout both lungs. But I kept changing the subject back to the adrenal gland and what our plan for that was going to be. So it is possible that we don't hear everything... on the other hand, would ask her, why she didn't tell you in December and hear what her explanation would be.

Now... as for the plan... the wait and see. I think that is pretty standard when nodules are that small. I know that was our plan too. My nodules ended up being very small and "stable"... also very lazy. By that I mean, they were too lazy to grow... so I had a nice long 2 1/2 year break of stable nodules so did not need treatment of any kind for them. It was only this last spring that 2 of them decided to start to grow. Because mine are spread throughout both lungs, surgery is not an option. I did have an RFA on one a year or so ago, but the others are too small and scattered so RFA is not necessarily the answer for all of them. Also, you don't want to start chemo too early when they are that small because the whole purpose of chemo is to shrink them and stabilize them. So you don't want to waste chemo to shrink them when they are already small... when you might need that chemo later on.

So, totally understandable that you are disappointed, discouraged and want to get something happening NOW... but sometimes wait and see is the best plan, even though we hate doing that (and the longer you can stay off chemo, the stronger your body/system will be if you have to go back on it).

Hang in there!!

Cheryl

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

My onc (was) the same way, mention nothing and then all of a sudden (to me) we are looking at mets to the liver...needless to say I have a new onc.

Hope your new onc is able to be more personable and open with you.

GrannyC

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

Thank you so much!! I know you're so right but it's so scary. In only three months another nodule popped up and I'm so scared what will appear in another three months. I'm a bit OCD and like to have a plan or information on what to do if they continue to grow. Since I am a KRAS mutant and these nodules are on both lungs I feel my options may be limited:( Melissa

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

Just thought I'd add to that... where you are being scared is the fact this lesion appeared in just three months. That is scary in itself because we all jump to the conclusions that these lesions just appear and are off and running. But in fact, it's quite possible the lesion was there all along and it all depends on the angle of the CT scan (remember, CTs take pictures in slices). So it's quite possible this lesion was hiding between slices so just never showed up on previous ones. Your lesions are so small, it's quite possible that at this size one or two might fall between an image slice and you'll think "Oh great, they disappeared!" and then one shows up elsewhere and you say, "Oh no, that's a new one!" When in fact, there might be X number of them, all very small, and none of them are growing, they are all stable... but hiding between slices of the CT images. The good news is... if they are that small, then you are not in any danger at this point. And if they remain that small and stable, then that gives you more time to be chemo free and strengthen your body/immune system.

Now, if a couple of them start growing, then fine, your oncologist now knows they are there and will be watching for growth... and once they get to the place where it's time to deal with them, then that is exactly what you will do.

I'm not sure why your onc says a PET scan is not good for colon cancer followup... that doesn't make sense. First we do the regular blood tests/CEA test. If the CEA shows an upward trend, then the next thing is either an xray (depending what we already know) or a CT scan. If the CT scan doesn't show any reason for the upward trend in CEA, then a PET scan... of course, this is all depending on doing the things before hand. Not everyone's CEA results are good indicators for them. Hence the CT scan. But if the CT scan isn't showing anything that is worth checking into, the PET would be the next. All three show very different angles/and mean different things so no one is the be all and end all. But it is all part of the trail to find out what's going on, so the PET is a valuable tool as are blood tests, xrays, CT scans or ultrasounds.

Cheryl

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

I am sorry the results were not what you wanted to hear. In trying to decipher the CT speak, it appears there are 3 nodules, all very small. Your onc's plan is really quite reasonable, since they are so very small, see what they do. If they do act up for you and enlarge or more appear, perhaps RFA would be an option with follow up chemo. If George were in this position, I would vote for holding off on chemo for now. Getting a second opinion on this is a very smart idea. You do not have extensive spread and it soulds like if it is growing at all, it is very minimal.

Get Craig's take on all this, he has lots of experience with lung stuff and may be able to give you some good advise on his experiences.

Get your second opinion and then let us know what they say.

Take care - Tina

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

Thank you:) I have never been a patient person. I guess I'm like most young women these days and want immediate results rather than later. I'll let you know what my doctor says tuesday.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

A 2nd opinion is never a bad way to go and can go along way with either verifying or disputing what is being told to you now.

A wait and watch approach is not necessarily all bad - I'll tell you why.

First, needle biopsies are a "hit and miss" proposition at best. Mine have never been accurate, so I just don't believe in that approach anymore. I mean if it were cancer, we have to attack either through chemo/surgical procedure, or straight surgery. If it was not cancer, but the nodules continued to grow, you gotta' get those out if they continue to grow. But I just don't know anymore if what they are saying it is the truth. They misdiagnosed my liver and it nearly cost me. I've been on both sides of the fence and I just believe in surgical removal and a biopsy to confirm the findings then and there.

The only "real" biopsy is in the O/R, where they physically remove the mass and run the biopsy right there - that's a tried and true approach.

Second, PET scans - go ahead and do one if you can get the approval, BUT....take the results with a grain of truth one way or the other. Just because the PET lights up, does not necessarily means it is Cancer for sure.

My DaVinci surgery was all systems go, CT showed growth - PET scan showed cancer activity - we cut out the 2 tumors and they were benign.

This last lung surgery we cut out a 6cm tumor that was malignant - no clear margins as the tumor lay next to the spine - and thus extensive radiation and chemo treatments of all kinds.

And CEAs are now misleading for me - I was down to 0.5 but had that big tumor in my lungs - when it was in liver, the marker was more accurate, but once in lung, the CEAs are now out the door and I don't consider them a marker for me anymore.

I guess what I'm trying to say, is that despite all of the "standard tests" that we use for monitoring our cancers, the results can be MISLEADING on a good day.

I think the good approach is what you're doing - go talk to the new onc and get their opinion - that alone will give you a guideline on where to move to next. Remember, it's not a sprint, it's a marathon - just gather your 2nd opinion and then weigh the odds on what you've been told. You'll know more of what to do then.

Right now, try and not panic, those nodules are small - the one they pulled out of my lung was about the size of a tangerine so it was sizeable enough.

Anxiously awaiting the next post from you:)

-Craig

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

"My Rock" thank you very much. You have been though so much and I really don't know how you do it! I guess I was just hoping that I was gonna be that one in a million that would do all the 1st line standard treatment and be done with this- how vain of me. I like you advice on needle biopsy - I want 100% confirmation no hit or miss for me. I do have one other question though- if these nodules continue to grow, they have to be cancer right?? I mean can growths be anything else? :)Melissa

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

if these nodules continue to grow, they have to be cancer right?? I mean can growths be anything else? :)Melissa

Not necessarily true...I look no further than my 1st lung surgery...we watched the spots grow bigger with each scan cycle...the CTs showed the mass and size of the growth - PET scans lit up in those areas too (looked like cancer all the way; would have "bet the ranch."

So we cut them out, biopsied on site the phyical tumor and those 2 turned out benign.

So everything said cancer, cancer, cancer, but it was benign, benign and benign.

I've had too many "tests" that have misled me in my journey - that's why I'm leery of them and take them for what they are, which may or not be the truth, but it's all we got.

We've "misdiagnosed" many times in my journey, but we've never been wrong in the operating room when they have the tumor in their hands - that's the only test I believe in and I stake my life on those tests and believe in that kind of truth.

But the bottom line, Melissa, if the tumors continue to grow big enough, you would eventually have to address them - belign or malignant, a tumor that grows too big for the cavity it resides in is going to cause trouble down the road.

I want to hear more - good to see you shining face again, I've missed you:)

"Your Rock"
-Craig

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

Melissa,
It does look as though the lesions are to small to identify, but I don't blame you I would want to know what they are. You should ask for a Pet Scan to see if you can get more info before the next ct.

Since you are Kras mutant did you see the post from ColoCan a while back I copied/pasted it for you. You may want to take the info to your onc.

mutated or wild ......

can be found at drugs.com/clinical_trials.html

its second article listed now (OncoMed anti-Cancer stem Cell antibody OMP-21M18........)

Also, Physorg.com this date has interesting article on tumeric.......and another on an upcoming study of stage 1 and 2s involving cholesterol meds....

anotheer article, "Anti-DLL4 Inhibits Growth and Reduces Tumor-Initiating Cell Frequency in Colorectal Tumors with Oncogenic KRAS Mutations" can be read at

http://cancerres.aacrjournals.org/content/71/5/1520.abstract

If you're KRAS wild or mutated, you might want to read these

Good luck Melissa and God Bless you, I am also praying for you

Jan

Lilmiss82's picture
Lilmiss82
Posts: 253
Joined: Dec 2009

I always felt I had a strong 6th sense and something was telling me I needed to start taking my tumeric supplements that I bought sometime ago. Low and behold I took 1 this morning before I got the Ct results this afternoon :) Thanks for the info

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I bypassed all the rest of the posts after I read the first one because I want to give you another view without me thinking about all the others...I am sure they all are good I just wanted mine to be without biase and I will read all the other posts after I finish this one...I hope no one is offended..Pretty sure no one will be.........
I had a tumor growth come up after 2 years of nothing...I was never scanned but my CEA started to elevate...I asked for a CT and Boom there it was..1.4 cm...I ask myself right then and there, what if CEA hadn't picked it up ? Might be shoving daisies right now, luckily it did, but after it was 3/4" in diameter...So, I took my butt to Vandy and found me a brand spankin new model Oncologist and am very glad I did. Now, after a few questions I figured out she was right for what I needed...I ask her to have a CT scan done on me at 6 months.....6 months was Wednesday and yeah, I haven't said anything up til now cause there was no use in worrying the masses for something that doesn't tell me anything at that moment. It doesn't matter to me what it is, it is what it is. I am wondering if in fact you have thought of cyberknife as Jennie did...or RFA...or as menright did with MFA...In retrospect I wish I had opted for RFA instead of surgery for removal, even though my tumor was removed with no node involvement and all clear margins, I still lost half of an upper lobe...am I wrong to think that RFA would have saved that portion and only killed the tumor in place...Maybe I am off with this but in any instance, I opted for removal, it was not to stay in me, they can galk at it on the tray as long as its out of me where it has no more effect on me......My thoughts are if I ever recurr and it is tumor growth in the lung, my goal is to have it electrocuted, froze, or melted in place by RFA or Nanoknife, or MFA...Cyberknife.....and to save surgically removal, even if laproscopically done as a last option....Oh well, better I know now than later...and it could very well never have been an option for me...but if there is a next time my options will be all taken into consideration on whatever will keep me breathing the longest and fullest............You are young and resilient, you are very head strong and I know you will come out of this fine and none the worse for wear.....Pull your big girl panties up and get your game face on....it is what it is, now kick its azz.....and I'll be right here cheering you on....you'll do well through this LilMiss, I know you will......Love to ya........buzz

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

This is very upsetting. I'm really sorry.

You are a long, long way away from being symptomatic.

Hopefully your new doc will be able to come up with more than just two plans to consider. I would want more info before I made a decision. You sound a little freaked out, and rightfully so. You want the bastards out and you want them out now. BUT, there may be some advantage to waiting a bit longer.

I hope you get over the shock of the news soon.

Take care,
Roger

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

I have had a couple of bad days due to chemo, so forgive me if I repeat any info. I only had enough energy to skim through all the answers.

Anyhow, I am sorry that you have mets to your lungs, and surprised that they haven't offered you a petscan. After they biopsied the tumor in my colon, and found out it was cancerous, they gave me the choice of a biopsy or petscan, to view the lumps that were seen in an earlier catscan done when they initially diagnosed me with diverticulitis (sp). Unfortunately they are mets, and now I am on Folfox with Avastin. I just finished my 4th Folfox this week, so I don't know when they will scan again, so I can't help you with any further knowledge. I would go for a second opinion.

Take care,

Sandy

AnneCan
Posts: 3693
Joined: Oct 2009

Hugs are coming to you. I am sorry you have these Da%$ nodules. I have a small one on my lung + the onc says we will deal with it when we need to. Right now we are more concerned with the Liver + lymph nodes. I have never had a PET. I think a second opinion is a good idea. I am thinking of you + I am hoping for good things for you.

sasjourney
Posts: 393
Joined: Jul 2010

Melissa,

Sorry that you didn't get better news and I know it is impossible not to worry about it now. I would get some second opinions and start figuring out your plan of attack. My thoughts and prayers are with you. Now go kick some butt!

Hugs,
Sara

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Melissa,

I'm sorry you had disappointing results on your scan, truly. Me too, actually, so I know how you're probably feeling this week.
The thing that seems so weird to me is how oncs are all so different. Yours won't give you a PET scan & mine won't give any other kind of scan. I get a PET/CT every time. I've asked if I should have a regular CT with contrast & he said no, because then we wouldn't be able to see or follow the change in metabolic uptake/activity. So I get a PET every single time. I know that my liver surgeon doesn't put a lot of stock in PETs. My onc said for him it depends upon where the PET is being taken. Some places have better and more or less precise machines than other places.
I'm glad to hear your update that you went ahead and made an appointment with another oncologist. I was very surprised to hear that he didn't give you chemo, saying the nodules are too small. Why wait and just watch them grow? Doesn't make sense to me & I guess it didn't to you either, which is one of the reasons you're switching oncs. the wait and see what happens approach is the stupid approach, in my opinion! If it were your onc w/ the nodules, would he just wait and see what happens? I bet not!
I hope that your appt w/ the new onc goes well and that he or she is more proactive than your first onc.
I have my appt w/ my onc on Monday to discuss my scan results. My growth was slight & since there really isn't any other chemos left for me (the one I'm on now isn't even approved for colorectal cancer- it was a fight for insurance to pay for it, so I don't know where I turn now). Maybe we'll just keep it the same and I'll step up/continue the natural treatments as well. That is one nice thing- my onc is fine w/ me doing holistic treatments in addition to my chemo. I really haven't been doing it long enough to see it impact those nasty tumor cells yet.

There's more that can be done & I'm glad you made the change. Let us know how that appt goes- take care!

Lisa

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

that change is normally a good thing......and in this case I think its a great thing......buzz

dorookie's picture
dorookie
Posts: 1681
Joined: Jul 2007

I am sorry your results were not what you expected or wanted. I have to agree with Lisa on how different ONC can be. I tell you I must have had an angel in my ONC, because I never questioned, nor ever felt like I needed to,I just did what he said, when my cancer came back in my right lung, found during a cat scan, he immediately did a PET scan, then a biopsy, I really dont recall how big it was but I want to say 5-7mm range, I could be wrong, but anyway, he immediately set me up for surgery, the plan was to get it out of me, like for buzz, then start chemo. I could have argued that chemo wasnt needed after I got an all clear margins and no lymph node involvement, but my ONC said that chemo was in his plans and he highly recommended I do it, and so far (knocking on wood) I have been clear for 2.5 years. I know alot of people talk about Dr. Lenz and some other doctors, but let me tell you my ONC (my angel) name is Dr. Kellogg, and he is located in Phoenix AZ. I have a new ONC only because I got a job transfer to Texas, if it werent for that I would still be with the same one. Just an outstanding DR, doesnt talk much, but very compassionate, and above all very very knowledgeable. I too would recommend a PET scan, but others here dont agree, I had a very aggressive ONC and well I have said enough about him.

You will be in my prayers, stay strong young lady, and before you know it we will be calling you old lady..LMAO...

HUGS
Beth

Sonia32's picture
Sonia32
Posts: 1067
Joined: Mar 2009

I was upset at reading your post and Lisa's. I really wanted improvements for you both. But we are family on here, and we are in this together. Your a tough lady and I know you'll get a plan of action together. Hopefully your nodules will stay down in the next scan, I pray they do.

Hugs

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

Melissa,

I know how distressing this must be for you! Praying things will be just fine for you!

*hugs*
Gail

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