PET SCAN

COBRA666

I had a Dr. appt. today. had blood work and a port flush. Everything came back fine. I asked the Dr. about another PET Scan since my last one was last November. He said no reason for a scan unless something changes with blood work or lymph nodes happen to swell. Something doesn't sound right. I know scans are not good for us so I am thankful for not being bombarded with scans, but what if the nodes swell in my abdomin like in the beginning. I wouldn't know it. Does this sound right to you. Am I being a little paranoid here or do I smell a little Obama Care train wreck in here somewhere. You know the old saying. "Just because you are paranoid don't mean it ain't so".  John 

Shoopy

To PET or not to PET

John,

I am so glad you asked this question because I've read that some/most doctors take the approach your doctor is taking.  I've also read that most of the time the patient recognizes a relapse before the PET scan or even blood work indicates it.

While I subscribe to the quote "It's amazing where a paranoid mind can take you.", I also understand the meaning of "Sucess breeds complacency.  Complacency breeds failure.  Only the paranoid survive."

Karl 

Max Former Hodgkins Stage 3

My take on it...

John,

I ended treatment four years ago, and have had one (1) PET since  since my last infusion.  My doc told me at that time pretty much what you are hearing today.  I don't think that I have had but one CT since that PET.

I do not recall what cancer you had, or how aggressive it is.  Unless it is extremely prone to fast relapse, I would say that what your doc is doing is close to the norm. 

I do not see any "politics" in what he is perscribing.  He is fitting into a current trend to minimize radiaton exposure when it is legitimately reasonable to do so (I think).  Another doctor, using differing reasoning, might have you do another PET,  but doctors, like everybody else, use individual judgments to go about their work.

Stay healthy and well !

max

COBRA666

Max Former Hodgkins Stage 3 said:

My take on it...

John,

I ended treatment four years ago, and have had one (1) PET since  since my last infusion.  My doc told me at that time pretty much what you are hearing today.  I don't think that I have had but one CT since that PET.

I do not recall what cancer you had, or how aggressive it is.  Unless it is extremely prone to fast relapse, I would say that what your doc is doing is close to the norm. 

I do not see any "politics" in what he is perscribing.  He is fitting into a current trend to minimize radiaton exposure when it is legitimately reasonable to do so (I think).  Another doctor, using differing reasoning, might have you do another PET,  but doctors, like everybody else, use individual judgments to go about their work.

Stay healthy and well !

max

max

I was diagnosed in May 2010 with follicular nhl. As you already know it is classified as very slow growing. After 6 rounds of r-cvp I was in complete remission. I do not know what the rate or odds of return is. I never go to those websites anymore. I used to check out the Websites at first, but gave it up because one said one thing and the other said something else. They ended up scaring you to death or leaving you confused. Most were outdated to begin with. I have found this board has provided a lot more info. Thanks,  john

Rocquie

Scans

John, my last PET scan was almost 8 months ago. I was declared in remission at that time. I had a total of 4 PET scans during my treatment and many CT scans. My doctor told me the radiation exposure (not including the radioactive substance injected into the body) for a PET and CT scan are about the same. He also said those scans deliver up to 500 times the radiation of a standard X-ray. Yikes.

I know that if I was concerned, my doctor would order a scan. He has said as much. But he doesn't believe it is necessary at this time for the following reasons: my blood work is good and my lymphoma markers are normal, I don't have any symptoms, and most importantly I am on Rituxan maintenance. I don't want any unnecessary radiation.

As Karl said, I'm pretty sure I would know if I was relapsing. My lymphoma, although an indolent type, had transformed and I was very, very symptomatic. (Also known as "sick as a dog").  

Congratulations on a good report at your doctor's visit and way to go on your continued remission. That is great news!!

Cheers,

Rocquie

PS Did you hear the one about the horse who walked into a bar?

 

COBRA666

Rocquie said:

Scans

John, my last PET scan was almost 8 months ago. I was declared in remission at that time. I had a total of 4 PET scans during my treatment and many CT scans. My doctor told me the radiation exposure (not including the radioactive substance injected into the body) for a PET and CT scan are about the same. He also said those scans deliver up to 500 times the radiation of a standard X-ray. Yikes.

I know that if I was concerned, my doctor would order a scan. He has said as much. But he doesn't believe it is necessary at this time for the following reasons: my blood work is good and my lymphoma markers are normal, I don't have any symptoms, and most importantly I am on Rituxan maintenance. I don't want any unnecessary radiation.

As Karl said, I'm pretty sure I would know if I was relapsing. My lymphoma, although an indolent type, had transformed and I was very, very symptomatic. (Also known as "sick as a dog").  

Congratulations on a good report at your doctor's visit and way to go on your continued remission. That is great news!!

Cheers,

Rocquie

PS Did you hear the one about the horse who walked into a bar?

 

Horse that walked into a bar,Huh ?

No, but ifs anything like the farmers daughter and the traveling salesman, I'm all ears. John

Rocquie

COBRA666 said:

Horse that walked into a bar,Huh ?

No, but ifs anything like the farmers daughter and the traveling salesman, I'm all ears. John

Horse

The bartender said, "Why the long face"?

Rocquie

--Duplicate?!--
 

--Duplicate?!--

 

COBRA666

Rocquie said:

Horse

The bartender said, "Why the long face"?

(No subject)

Max Former Hodgkins Stage 3

Quagmire

A version of the old "The fact that you are paranoid does NOT prove you aren't being followed."

Max Former Hodgkins Stage 3

COBRA666 said:

max

I was diagnosed in May 2010 with follicular nhl. As you already know it is classified as very slow growing. After 6 rounds of r-cvp I was in complete remission. I do not know what the rate or odds of return is. I never go to those websites anymore. I used to check out the Websites at first, but gave it up because one said one thing and the other said something else. They ended up scaring you to death or leaving you confused. Most were outdated to begin with. I have found this board has provided a lot more info. Thanks,  john

Yup

John,

I understand exactly your point.  One of the first things my oncologist told me when we first met was "say off the internet," and in fact, I never looked at a Blog until over a year following treatment.

I DID do "academic" searches however, using ONLY university sites and professional journals, like Oncology . Johns Hopkins, Stanford Medical School, Sloan-Kittering, M.D. Anderson -- all of those are stellar . Obviously you have to look at the dates of the articles even at sources like those.

What is harmful are the flat-earther sites that promise miriacle elixers and supplements. These are easy to spot: They begin by explaining how oncology is a giant, world-wide conspiracy, run by drug conglomerates who want cancer patients DEAD .  They do not very cogently explain why oncologists make more with dead patients than they would treating survivors. I remember one that featured an extremely dumb blond  as spokeswoman (I will not mention the name) -- a person whose career is based upon sounding like a moron in sitcoms.   In other words, most of what is on the internet regarding oncology is approximately as stupid and ridiculous as all of the other stuff on the internet !

Most chemos are already plant-derived.  Eating fortified spinich and quitting processed foods never saved a soul in history, however. And never will . But I will never convince my mother-in-law of that !

max

Shoopy

Max Former Hodgkins Stage 3 said:

Yup

John,

I understand exactly your point.  One of the first things my oncologist told me when we first met was "say off the internet," and in fact, I never looked at a Blog until over a year following treatment.

I DID do "academic" searches however, using ONLY university sites and professional journals, like Oncology . Johns Hopkins, Stanford Medical School, Sloan-Kittering, M.D. Anderson -- all of those are stellar . Obviously you have to look at the dates of the articles even at sources like those.

What is harmful are the flat-earther sites that promise miriacle elixers and supplements. These are easy to spot: They begin by explaining how oncology is a giant, world-wide conspiracy, run by drug conglomerates who want cancer patients DEAD .  They do not very cogently explain why oncologists make more with dead patients than they would treating survivors. I remember one that featured an extremely dumb blond  as spokeswoman (I will not mention the name) -- a person whose career is based upon sounding like a moron in sitcoms.   In other words, most of what is on the internet regarding oncology is approximately as stupid and ridiculous as all of the other stuff on the internet !

Most chemos are already plant-derived.  Eating fortified spinich and quitting processed foods never saved a soul in history, however. And never will . But I will never convince my mother-in-law of that !

max

Now I'm thinking...

The only "dumb blond spokeswoman whose career is based upon sounding like a moron in sitcoms" that I can think of...would be Suzanne Sommers from Three's company.  Am I close?

Max Former Hodgkins Stage 3

Rocquie said:

Scans

John, my last PET scan was almost 8 months ago. I was declared in remission at that time. I had a total of 4 PET scans during my treatment and many CT scans. My doctor told me the radiation exposure (not including the radioactive substance injected into the body) for a PET and CT scan are about the same. He also said those scans deliver up to 500 times the radiation of a standard X-ray. Yikes.

I know that if I was concerned, my doctor would order a scan. He has said as much. But he doesn't believe it is necessary at this time for the following reasons: my blood work is good and my lymphoma markers are normal, I don't have any symptoms, and most importantly I am on Rituxan maintenance. I don't want any unnecessary radiation.

As Karl said, I'm pretty sure I would know if I was relapsing. My lymphoma, although an indolent type, had transformed and I was very, very symptomatic. (Also known as "sick as a dog").  

Congratulations on a good report at your doctor's visit and way to go on your continued remission. That is great news!!

Cheers,

Rocquie

PS Did you hear the one about the horse who walked into a bar?

 

Scans

Rocquie,

I did not know how the radiation in a CT compared to a static x-ray, so I appreciate that number.  Many places  are now combining PET with the CT, which supposidly cuts down on the exposure (and costs) of doing both separately.

I was a submarine sailor for six years active duty, and we always had to wear TLDs (radiation monitoring badges) on our belts. We were even required to keep them adjacent to us when sleeping.  Our Radionics Officer explained to us in a training session once that the average US sailor on a submarine received much less radiation while underway than a civilian at the beach does.   I worked both on nuclear warheads and was frequently near the reactor vessel, but my lifetime exposure was miniscule.

A sunburn is objectively one of the most unhealthy things a person can experience in day-to-day living.

And before anyone asks: No, I do not think that submarine life had anything to do with my subsequent lymphoma.  Most radiation-induced cancers are either of the thyroid, or leukemia .

max

onlytoday

Just got scanned

John,

We seem to be on the same schedule.  I just had bloodwork and a CAT yesterday.  This is a 6 month check up following my last chemo.  I only achieved Partial Remission so the CAT makes perfect sense in my case.  I still had enlarged nodes after treatment.  I also have a protein that my lymphoma secretes that is a good marker of movement. Praying that both are down this time!

Anyway, my point is that I'm fine with my scan because I never achieve full "R".  But in your case, if you trust your doc and he says all is well, I would take his advice and run with it.  Congratulations!!  May your Remission last a long, long time!!

However, if you start worrying about it- then request the scan!  Stress is our enemy.  (Everyone's enemy really) 

Take care!

Donna

 

P.S.  When I get my results I will check in and let you all know!   

COBRA666

onlytoday said:

Just got scanned

John,

We seem to be on the same schedule.  I just had bloodwork and a CAT yesterday.  This is a 6 month check up following my last chemo.  I only achieved Partial Remission so the CAT makes perfect sense in my case.  I still had enlarged nodes after treatment.  I also have a protein that my lymphoma secretes that is a good marker of movement. Praying that both are down this time!

Anyway, my point is that I'm fine with my scan because I never achieve full "R".  But in your case, if you trust your doc and he says all is well, I would take his advice and run with it.  Congratulations!!  May your Remission last a long, long time!!

However, if you start worrying about it- then request the scan!  Stress is our enemy.  (Everyone's enemy really) 

Take care!

Donna

 

P.S.  When I get my results I will check in and let you all know!   

HEY !!!

Donna,

  I can definitely see you continuing with the scans since full remission has not been reached as of yet. It just seems so lonely when they say no more scans. It's a little hard to explain. I do trust the Dr. so I am fine with what he says. The only thing is I hope the remission last FOREVER, not just a long, long time...LOL. Be so nice if everyone could reach remission forever. I was going for bloodwork every 3 months and now it's every 6. He said something about we may be able to stretch that to a year after the next visit if all is Ok.

 Be looking for your results and wish you luck !!!