More questions..PET scan, chemo.... PLEASE answer if u know

idlehunters

Hi guys,

I had to go get all my medical records to take to Texas. I got that PET scan CD and as I sit and look at it in my hand I keep wondering if I should pop it in the computer and look at it. Question is.... what will I see... I mean are the areas where you have cancer lit up? Do I actually want to see it???? All they told me about my lungs is there are multiple bilateral nodules... If I see my lungs are just full of it.... I am gonna freak out... I know I will. Ever since they even told me I think I have been having psycosymatic(sp) symptoms like shortness of breath and coughing.. Stupid ain't it????

Another thing.... They will not start any treatment on me until I have been out of surgery for 6 weeks. Well, its gonna be 2 additional weeks after that before I can get in to MD Anderson. Do you think waiting an additional 2 weeks to start treatment will matter as far as cancer spreading? OR... should I let this oncologist here start me on something and then anderson can change it if they don't agree..... OR do they not change you up once you start on something.....

And.... if you use acupuncture for puking? pain?...at what point do you get it? During chemo? before u start?

Thank you!

Jennie

karguy

scan cd
I think you should wait ,and look at the cd with a dr.and let them explain what you are looking at,if you look at it at home ,would you know what you are looking at?.I wouldn't.When I was told I had cancer was after the colonoscopy,the dr. handed me the pictures,told me I had cancer,said good luck,then walked away.I had stage iii going on stage iv,and I still didn't know what I was looking at untill the dr.s showed me.You should not upset yourself unessesarily.If you are not sure about the treatment schedule,then you should call dr.anderson's office ,and talk to them,see what they say.If you decide to use acupuncture,then you should probably start when you need it,when the puking,pain starts.I wish you the best of luck,please try and stay as calm as you can,and keep telling yourself that you will be a surviver,that's what I did,and you will be a surviver too,just never give up,ever.

CherylHutch

Jumping the gun
Jennie... you are jumping the gun again Breathe, girl!

You are trying to come up with things to make you freak out. For starters, chances are your computer won't be able to read the disk. For the PET scan, it's a 3-D type image and you need a special software to actually read the scan. A friend of mine used to teach Radiology students here at one of the Universities. Both he and I have a Mac. So he actually got me a copy of the software for my Mac that can read the PET images. Other than my body image would turn completely around, I had no idea what I was looking at. The things that I thought lit up would indicate I had cancer throughout my body and at most of my joints... apparently THOSE are not the metabolically active lit up places. But where it lit up that the radiologist and oncologist saw and knew to be cancer, I couldn't even see them... so no, the untrained eye is not going to see what you need to look for.

Now... when you ask about acupuncture for puking and pain... are you building yourself up to expect to have this? Remember, what thoughts you put out there as expectations, there's a good chance you will get them back tenfold. I was the exact opposite. I HATE puking, always have ever since I was a child. I'm much rather have a migraine headache or a broken leg than puke. So, I just told myself that I may get the "fatigue" and I may be low on energy, but I'm not going to get so sick that I puke because I don't want to There were a couple of times I felt like I was getting some nausea, I wasn't sure if it was going to get to outright puking nausea or if I was just going to feel queasy... either way, I don't like that and don't want it. So if the nausea even tried to rear it's ugly head, even in a mild form, I took one or two puffs of some mj and that eliminated all feelings of nausea and/or the yucky feeling.

Seriously, I would be off and running (figuratively speaking) and worked the box office all summer, wearing my chemo pump every second week. I was busy every night, with the help of others we would get 1400 people into the theatre, on time every night. Once they were in, we would cash out and although I was free to go home, I'd stick around with my friends on those warm summer evenings.

I didn't look for potential problems. I just assumed I wouldn't have any and knew that if I DID get hit with them, there is a med to counteract the side affect. My oncologist said right from the start... I am going to bombard you with chemo, and then we are going to hit you with 6 weeks of daily radiation. There is a long list of possible side affects for both the chemo and radiation, but I'm telling you right now... if you keep me posted with how you are feeling, then if you have a side affect that is hard for you, trust me, there is a med that can fix it. You should NEVER have to put up with feeling horrible and we'll work together to make sure you aren't in pain or feeling horrible. I believed her... and anything I did experience ended up being so minor in comparison to what it could have been.

Everyone's mileage may vary. You may be like me and experience next to nothing... but if you do happen to get sick or have a rough time, talk to your oncologist and tell her/him because they can fix it.

Soooo, sit back and relax until you start. The difference in your experience if you are relaxed and accepting vs being tense, stressed and always expecting the worst... it's like night and day.

Ok... it's 2:50am... I really must go to bed

Cheryl

lizzydavis

CherylHutch said:

Jumping the gun
Jennie... you are jumping the gun again Breathe, girl!

You are trying to come up with things to make you freak out. For starters, chances are your computer won't be able to read the disk. For the PET scan, it's a 3-D type image and you need a special software to actually read the scan. A friend of mine used to teach Radiology students here at one of the Universities. Both he and I have a Mac. So he actually got me a copy of the software for my Mac that can read the PET images. Other than my body image would turn completely around, I had no idea what I was looking at. The things that I thought lit up would indicate I had cancer throughout my body and at most of my joints... apparently THOSE are not the metabolically active lit up places. But where it lit up that the radiologist and oncologist saw and knew to be cancer, I couldn't even see them... so no, the untrained eye is not going to see what you need to look for.

Now... when you ask about acupuncture for puking and pain... are you building yourself up to expect to have this? Remember, what thoughts you put out there as expectations, there's a good chance you will get them back tenfold. I was the exact opposite. I HATE puking, always have ever since I was a child. I'm much rather have a migraine headache or a broken leg than puke. So, I just told myself that I may get the "fatigue" and I may be low on energy, but I'm not going to get so sick that I puke because I don't want to There were a couple of times I felt like I was getting some nausea, I wasn't sure if it was going to get to outright puking nausea or if I was just going to feel queasy... either way, I don't like that and don't want it. So if the nausea even tried to rear it's ugly head, even in a mild form, I took one or two puffs of some mj and that eliminated all feelings of nausea and/or the yucky feeling.

Seriously, I would be off and running (figuratively speaking) and worked the box office all summer, wearing my chemo pump every second week. I was busy every night, with the help of others we would get 1400 people into the theatre, on time every night. Once they were in, we would cash out and although I was free to go home, I'd stick around with my friends on those warm summer evenings.

I didn't look for potential problems. I just assumed I wouldn't have any and knew that if I DID get hit with them, there is a med to counteract the side affect. My oncologist said right from the start... I am going to bombard you with chemo, and then we are going to hit you with 6 weeks of daily radiation. There is a long list of possible side affects for both the chemo and radiation, but I'm telling you right now... if you keep me posted with how you are feeling, then if you have a side affect that is hard for you, trust me, there is a med that can fix it. You should NEVER have to put up with feeling horrible and we'll work together to make sure you aren't in pain or feeling horrible. I believed her... and anything I did experience ended up being so minor in comparison to what it could have been.

Everyone's mileage may vary. You may be like me and experience next to nothing... but if you do happen to get sick or have a rough time, talk to your oncologist and tell her/him because they can fix it.

Soooo, sit back and relax until you start. The difference in your experience if you are relaxed and accepting vs being tense, stressed and always expecting the worst... it's like night and day.

Ok... it's 2:50am... I really must go to bed

Cheryl

Cheryl - You are terrific!
Cheryl,

You have the best attitude. You have made me feel so much better about my upcoming appointment with the oncologist on Tuesday. Yes, I am scared but your answer on Jumping the Gun was excellent. THANK YOU FOR THAT!!!

lizzydavis

CherylHutch

lizzydavis said:

Cheryl - You are terrific!
Cheryl,

You have the best attitude. You have made me feel so much better about my upcoming appointment with the oncologist on Tuesday. Yes, I am scared but your answer on Jumping the Gun was excellent. THANK YOU FOR THAT!!!

lizzydavis

Good on ya!
That's wonderful, Lizzy! If those of us who have been there can even help one of you newbies who are in the wait "mode" before you get started on your chemo/radiation/surgical journey (whichever one or combination you are on), then we have done our job of paying forward, and hope to continue.

The worst thing (actually, there are two) of this whole cancer journey are:

1) Fear. Being told you have cancer, no matter which stage you are at, is one of the most terrifying things in the world. There are no words in the English language that can adequately express exactly how that terror feels.

2) Waiting. In this journey of ours, it appears that half the battle is sitting around and "waiting". Waiting for surgery, waiting for treatments to start, waiting for ones blood counts to go up, waiting for something else to come down, waiting for appts., waiting to hear results, and the waiting list goes on and on and on.

Right now, at this very moment in time (and for months leading up to now), I feel terrific!! I'd say I feel stronger and healthier than I have in years and I didn't even know I was sick before, so my "norm" was based on being sick. I am not working (on LTD and will officially be taking early retirement Feb 1, 2010 - Freedom 55) and am doing what has always been my passion, being involved in the theatre day and night I can do that because I have income coming in from LTD

Some days I feel GUILT. Yes, GUILT! Why? Because here I am feeling better than I ever did while I was working full time, and I am off having the time of my life... my dream career, so to speak, but without pay. But the pay doesn't matter because I have income. Yes, I still have to go see the onc and get my scans done (and yes, I will have scananxiety come July when I get my next scan done), but inbetween appts., I feel like I'm a fraud since I'm doing so well.

So it hit me... why am I thinking "I wonder how much longer I have to live? After all, I'm Stage IV... the cancer has spread. The doctors say it's 'systemic' even though their tests only show it in the lungs, not the rest of my body. But I wonder how long before I'm bedridden, gaunt and on my last days??" Why would I think that when I'm healthier than I've ever been and feeling better than I ever have?? We put these death sentences on ourselves when we are nowhere near dying.

This is not to make light of those who are bedridden, can't eat, sleep around the clock. Yes, this disease CAN do this to people and WILL do this to a percentage of them. But if you are up and about, able to type on the computer and then head out to do the weekend grocery shopping and chores, then you are not in that percentage! And when you get an ache or pain from whatever treatment you may be on (or even when you aren't on a treatment), our first reaction is "OMG! The cancer has taken over!" when in fact, you have the same ache or pain that everyone gets that has nothing to do with cancer

So, give yourself a measurement of when you are allowed to think "this might be the end". Have you lost so much weight you are bedridden? Can you literally not get out of the bed without someone's help? Do you have to have a power of attorney take over because you are not aware enough to think with your own mind? Are you sleeping around the clock and only waking up for a few minutes/day and in those few minutes you are not aware of your surroundings?

If you the above things happening to you, then you have permission to thing things are not going well But if you are active, can do the boring weekend chores, can go out with family and friends, can b*tch about how you can't lose weight no matter how hard you try (or any other favourite b*tch)... then you are doing fine and banish all evil "death" thoughts from your mind.

Oh... and I noticed one thing in Jennie's post that I didn't answer. Jennie, you were talking about a CAT scan, not a PET scan. If the CAT scans are in a .jpg format, then yes your computer can bring them up. BUT, I can pretty much guarantee you will never be able to find the "multiple nodules" in your lungs. Seriously... my lung surgeon would enlarge the areas on his computer screen for me and point out the nodules. I freaked out because there were hundreds of little white specks on the images, and I asked if they were all tiny nodules that are about to start growing (there were hundreds of these white "forms" that would change shape as he enlarged or moved the image around)... and he said, "No, those are all blood vessels". Then, next to the nodule he was pointing out to me, was another white spot, same size, same shape and I asked if I were to get surgery, would he be taking both of those nodules out at the same time... and he said that that was not a nodule... it was a speck of scar tissue. Hello? So no matter how hard he tried to show me, I couldn't tell the difference of one white speck from another.

If you can take a crash course in radiology, you MIGHT be able to find one or two, but my bet is still you won't know what your looking at or what you are looking for

Have a great weekend everyone!!

Cheryl

idlehunters

CherylHutch said:

Good on ya!
That's wonderful, Lizzy! If those of us who have been there can even help one of you newbies who are in the wait "mode" before you get started on your chemo/radiation/surgical journey (whichever one or combination you are on), then we have done our job of paying forward, and hope to continue.

The worst thing (actually, there are two) of this whole cancer journey are:

1) Fear. Being told you have cancer, no matter which stage you are at, is one of the most terrifying things in the world. There are no words in the English language that can adequately express exactly how that terror feels.

2) Waiting. In this journey of ours, it appears that half the battle is sitting around and "waiting". Waiting for surgery, waiting for treatments to start, waiting for ones blood counts to go up, waiting for something else to come down, waiting for appts., waiting to hear results, and the waiting list goes on and on and on.

Right now, at this very moment in time (and for months leading up to now), I feel terrific!! I'd say I feel stronger and healthier than I have in years and I didn't even know I was sick before, so my "norm" was based on being sick. I am not working (on LTD and will officially be taking early retirement Feb 1, 2010 - Freedom 55) and am doing what has always been my passion, being involved in the theatre day and night I can do that because I have income coming in from LTD

Some days I feel GUILT. Yes, GUILT! Why? Because here I am feeling better than I ever did while I was working full time, and I am off having the time of my life... my dream career, so to speak, but without pay. But the pay doesn't matter because I have income. Yes, I still have to go see the onc and get my scans done (and yes, I will have scananxiety come July when I get my next scan done), but inbetween appts., I feel like I'm a fraud since I'm doing so well.

So it hit me... why am I thinking "I wonder how much longer I have to live? After all, I'm Stage IV... the cancer has spread. The doctors say it's 'systemic' even though their tests only show it in the lungs, not the rest of my body. But I wonder how long before I'm bedridden, gaunt and on my last days??" Why would I think that when I'm healthier than I've ever been and feeling better than I ever have?? We put these death sentences on ourselves when we are nowhere near dying.

This is not to make light of those who are bedridden, can't eat, sleep around the clock. Yes, this disease CAN do this to people and WILL do this to a percentage of them. But if you are up and about, able to type on the computer and then head out to do the weekend grocery shopping and chores, then you are not in that percentage! And when you get an ache or pain from whatever treatment you may be on (or even when you aren't on a treatment), our first reaction is "OMG! The cancer has taken over!" when in fact, you have the same ache or pain that everyone gets that has nothing to do with cancer

So, give yourself a measurement of when you are allowed to think "this might be the end". Have you lost so much weight you are bedridden? Can you literally not get out of the bed without someone's help? Do you have to have a power of attorney take over because you are not aware enough to think with your own mind? Are you sleeping around the clock and only waking up for a few minutes/day and in those few minutes you are not aware of your surroundings?

If you the above things happening to you, then you have permission to thing things are not going well But if you are active, can do the boring weekend chores, can go out with family and friends, can b*tch about how you can't lose weight no matter how hard you try (or any other favourite b*tch)... then you are doing fine and banish all evil "death" thoughts from your mind.

Oh... and I noticed one thing in Jennie's post that I didn't answer. Jennie, you were talking about a CAT scan, not a PET scan. If the CAT scans are in a .jpg format, then yes your computer can bring them up. BUT, I can pretty much guarantee you will never be able to find the "multiple nodules" in your lungs. Seriously... my lung surgeon would enlarge the areas on his computer screen for me and point out the nodules. I freaked out because there were hundreds of little white specks on the images, and I asked if they were all tiny nodules that are about to start growing (there were hundreds of these white "forms" that would change shape as he enlarged or moved the image around)... and he said, "No, those are all blood vessels". Then, next to the nodule he was pointing out to me, was another white spot, same size, same shape and I asked if I were to get surgery, would he be taking both of those nodules out at the same time... and he said that that was not a nodule... it was a speck of scar tissue. Hello? So no matter how hard he tried to show me, I couldn't tell the difference of one white speck from another.

If you can take a crash course in radiology, you MIGHT be able to find one or two, but my bet is still you won't know what your looking at or what you are looking for

Have a great weekend everyone!!

Cheryl

Cheryl.... You are Great!!
As always Cheryl you have put out some awesome advice. You always lift my spirits and are showing me the attitude i NEED to take with this monster. As many of you have. I guess my main concern at this time is part of the waiting game you were referring to. I am confused whether to let this onc. doc here start a treatment plan.... or if it is going to harm me (by making my cancer spread) to wait an additional 2 weeks to see doctors at MD Anderson. I am thinking I will discuss it with my onc here on the 4th and tell him my plans. See what he suggests. Then call MD Anderson and see if they agree.

I am taking the fear out of this scenario. I have no room for it anymore. I am just not going to accept this cancer sh*t. RETURN TO SENDER...... don't belong in my crib!!

Jennie

KathiM

idlehunters said:

Cheryl.... You are Great!!
As always Cheryl you have put out some awesome advice. You always lift my spirits and are showing me the attitude i NEED to take with this monster. As many of you have. I guess my main concern at this time is part of the waiting game you were referring to. I am confused whether to let this onc. doc here start a treatment plan.... or if it is going to harm me (by making my cancer spread) to wait an additional 2 weeks to see doctors at MD Anderson. I am thinking I will discuss it with my onc here on the 4th and tell him my plans. See what he suggests. Then call MD Anderson and see if they agree.

I am taking the fear out of this scenario. I have no room for it anymore. I am just not going to accept this cancer sh*t. RETURN TO SENDER...... don't belong in my crib!!

Jennie

You GO, girl!!!!
I think you are wise to talk to your current oncologist...and maybe even call your new oncologist and see what THEY think...

The good news is that, as a rule, colorectal cancer is fairly slow going. And, since the main stuff has been taken out, it's even better.

I agree with Cheryl. Breathe....I am celebrating 5 years in December since DX...patience is truly one of the greatest things I learned. Another thing? Asking when I have a question!

Hugs, Kathi

serrana

PET scan/chemo etc
I tried to look at my CD of my scan and it is password encripted; I tried to get it duplicated at a photo dup company and they couldn't so it is possible you can't see it even if you wanted to.
My onc waited 8 weeks from surgery before chemo; unfortunately they did a CT at 3 weeks and there were alot of "false positive" images that were related to the surgical healing that freaked everyone out.
I vote for you waiting until you go to MD Anderson for your consult....they are so fabulous

VickiCO

CD scans
I am handed a CD every time I have a scan. I can load it on my PC and view everything. I just can't understand it! I find them fascinating, but don't know what I am looking at. That's where my doc comes in...he explains it all and I am happy to let HIM understand it and translate it for me! My SIL is a doctor, and he looks at them , but never interprets anything for me without me talking to my oncologist first, as he is not MY doctor, just my SIL. My onc does discuss the info with SIL as soon as possible, meaning I have a solid team working with me.

And about the waiting...my surgeon & onc pushed my chemo start date out an extra 2 weeks to allow me to heal completely. I agree...go to MD Anderson and let them explain things for you.

Many hugs...Vicki